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Suspected RA diagnoses, talk to me what life is like with arthritis

(103 Posts)
2fedup Thu 02-May-13 21:14:01

After having issues with my hands and knees for some time and no RA markers in blood tests, they have decided I do, on balance, have RA. It's a bit scary and I've stopped looking at doctor google as that really doesn't help.shock
Off to see the consultant next week and want to know how life goes on. I'm hoping medication will help, but bad flare ups are currently quite a scary thought.

MoreLegsThanMe Thu 02-May-13 21:36:49

It does go on!

Am in a bit of a rush but didn't want you to go unanswered. I have had RA for about eight years now. The more aggressively it's treated at first the slower it progresses. You will probably find your consultant starts you on one drug, then if it doesn't work s/he will add another, take one away etc.

What you must do is look after number one. That is my worst trait, I cannot put myself first. Your body will tell you what it can/cannot do and please don't fight it or try and get through it. If you need to go to bed at 8pm, go (DC and work permitting of course).

I have to go for a bit but will be back later.

twintwo Thu 02-May-13 22:00:18

Will be watching this with interest. I suspect I have RA too, have had problems with the joints in my hands and feet over last few months. A blood test last week showed positive for rheumatoid factor so they are referring me to consultant plus some more blood tests. I'm really scared too, am hoping I can start on treatment soon and try and get it under control..

BreastmilkCrucifiesAFabLatte Thu 02-May-13 23:05:04

Lurking with interest. I also suspect I might have RA..

crashdoll Fri 03-May-13 08:47:03

Life goes on, it goes on differently to the way you might expect it but it can still be good. I have quite severe RA and despite an early diagnosis, we couldn't get it under control and I have joint damage but I've finally found the right combination of medications and after 4 long years, it's settled down a lot.

I didn't want to read and run but I have to go, so I'll be back to ramble reply later.

2fedup Fri 03-May-13 20:42:42

Pleased to see you are both up and rushing around smile
Good advice to rest when needed, I'm very much of the mindset that I'm going to carry on as normal and not let it slow me down, but TBH at times I'm just shattered. I'm not very good at sitting down and resting.

bigfatfeet Fri 03-May-13 20:50:16

Please don't panic, and PLEASE don't Google!

I was diagnosed just under a year ago, am taking all the drugs they give me and am now pretty much pain free and back to normal. I realise I have a long road ahead, and there will be blips along the way, but when I look back to how I was feeling this time last year, I can see how far I've come.

Good luck with your appointment next week.

vole3 Sat 04-May-13 06:10:47

I'm 6 years down the line and a single parent working a minimum 45 hour week in health care. I do have some joint damage due to time taken getting the meds right, but there is nothing I now cannot do that I did before (and probably an awful lot more that I do now that I didn't before, but that's another story).

In the early days listen to your body, rest if you need to, pace yourself, but keep moving if you can. Don't sweat what you cannot manage- who cares if stuff isn't ironed as long as it is clean.

Get OT input for adaptions that make life easier - getting stuck on the loo in the middle of the night is never a good look and some can openers are impossible even without RA. I hasten to add I don't need the loo seat raise now, but it was a godsend for the first 4 months until the flare subsided.

Don't minimise your symptoms to your rheumatology team, state them how they are as they will use that to calculate your DAS (disease activity score) and work out if your meds need changing or upping.

Don't minimise your symptoms to friends and family either. Just because your arms aren't hanging by a thread doesn't mean you have full movement, dexterity or power in them, but people don't appreciate what they can't see.

Fatigue is normal, not just 'I'm a bit tired and could do with a sit down at the end of the day' but that bone aching cannot lift your head off the pillow in the morning pre-flu type tiredness, but it does get better.

Life goes on, even if you do rattle and creak at times smile

Pandsbear Sat 04-May-13 13:58:53

And I am 14 years or so down the line and my RA is now well managed - by that I mean well medication-managed and has been for over 5 years. There are more medications available now than there were back in 1998 and (if it is RA) the Rheumy team will want to get it under control asap. It is the not-under-control RA that causes the joint damage long term.

vole3 has really good points. Best wishes.

OHforDUCKScake Sun 29-Sep-13 19:13:28

Im bumping this thread but cant write much because Im im so much pain, its flared up badly the last week or two and getting worse.

Was supposed to have a blood test 4 years ago but googled, panicked cancelled the appointment and subsequently buried my head in the sand.

Its so bad now its agony to type, it hurts to pick my son up or pat his back, and I couldnt undo his water. My wrists are worse, but also thumbs and knuckles, my elbows and knees.

Making an appointment tomorrlw to get the ball rolling.

Can anyone suggest anything for the pain and cracking in the mean time? Ive tied on a heat pad with a sock on the worst wrist, its helped a lot. Baths help. Im taking regularly neurofen but it isnt touching the sides.

Im ver glad t read this thread. Google has really frightened me.

OHforDUCKScake Sun 29-Sep-13 19:13:44

And Google Image? DONT DO IT.

bigfatfeet Sun 29-Sep-13 20:14:22

Have you tried Voltarol gel? It probably won't completely get rid of the pain but should help you to function - I used it to treat random hurts before I realised what was going on. Hope you get on OK with the doctor - I know how scary it is but if it is RA it will be better to know and start treating it; you don't need to live with this level of pain.

OHforDUCKScake Sun 29-Sep-13 20:17:07

Thank you, yes I have some of that and Ive used it twice it doesnt really do much.

What drugs have they given you bigfatfeet? I noticed above you were diagnosed a year ago which is quite recent.

Im finding it much easier to type right now this second because Ive had my wrist in a wheat bag formthe last hour which helps enormously (does anyone know why heat helps?) but my fingers are cracking.

bigfatfeet Sun 29-Sep-13 20:26:09

I'm on methotrexate and hydroxychloroquine - have had to fiddle with the dosage a bit but they're working really well for me at the moment and I no longer need any painkillers. I also had a couple of steroid injections when I was first diagnosed which helped to relieve the pain and swelling while waiting for the drugs to work.

Apparently the best thing to do is to apply heat followed by cold, but I always found that a bit confusing!

OHforDUCKScake Sun 29-Sep-13 20:31:25

I googled methotrexate and I found this very frightening information Im guessing they dont give that out willy nilly shock.

Im also guessing it wouldnt be good if you breast feed?

LostInWales Sun 29-Sep-13 20:32:45

Hey 2fed, I am waiting on blood test results but due to extent of active arthritis in all my joints I started on Sulfasalazine last week. It's one of the disease modifying drugs and I'm really excited at the prospect of slowing/stopping the progression of the joint damage. Having had osteo-arthritis since my late teens can I say to anyone with pain that taking paracetamol at the correct dose regularly (ie the 8 tablets in 24 hours as stated on the pack) can be beneficial as does taking ibuprofen better than paracetamol because it reduces inflammation BUT if you take ibuprofen regularly always make sure you take it with food and talk to your doctor about protecting your stomach. <Looks ruefully at ulcer blighted tummy> For work and other days when I have bad hands I have some ace neoprene gloves that support, warm and improve grip, plus they look like something bad spiderman would wear grin.

Ducks, GO make an appointment with your doctor as soon as possible, there are medications that, whilst scary, can stop the disease progressing and damaging your joints permanently. Make the most of this!

Hello everyone else too, nice to be somewhere where people understand that the crappy flu type symptoms and 'I cannot function anymore must sleep' body shutdowns. Everyone I know just thinks I've got a 'bad back' which hardly begins to cover it smile.

LostInWales Sun 29-Sep-13 20:34:52

These gloves they make my hands and wrists feel so much happier.

OHforDUCKScake Sun 29-Sep-13 20:41:47

Ive just bought some of those gloves, thanks for the link. LostImWales

bigfatfeet Sun 29-Sep-13 20:44:34

Methotrexate is a serious drug (it's used in much higher doses as chemotherapy) but it's considered the best first line treatment for RA and has worked very well for me, with few side effects. I don't think you can take it if you're breast feeding, and I was warned in very strong terms not to get pregnant (not that there's much danger of that), but there are plenty of others you can try if it doesn't suit you. As LostInWales says, the aim is to stop joint damage, so early, aggressive treatment is the approach they take.

OHforDUCKScake Sun 29-Sep-13 20:48:39

Ironically, when Im pregnant my joints are practically perfect. And for the first year of their life too.

My very first flare up was when my first born was 2.5.

My second son is that age now. I wonder if thats coincedence?

Also, is there anything else that it could be if it isnt RA?

And my last question - do your joints crack a lot during a flare up? I just got up then and every joint in my body cracked when I rose and walked the first few steps.

Thanks for your help.

LostInWales Sun 29-Sep-13 20:50:29

I have a friend who has Lupus and she was treated with Methotrexate last year, whilst it is a scary sounding drug she found she was tired as she got used to the increasing doses but is now so healthy it was worth the 6 months of tiredness.

Ducks I think I might order and extra pair so I am always covered now the cold weather is coming. They are like pulling on a hug for your hand!

I was diagnosed with RA five years ago, and life indeed can and does go on. I think, perhaps, I've been quite lucky in managing to get it under control quickly, and it hasn't affected me very much so far.

DUCKS - I've been on sulfasalazine since I was diagnosed (whilst pregnant) and managed another 2 pregnancies and breast-fed both my DCs (on sulfasalazine), hoping to BF this one too when it pops out in a few weeks time.

I was really upset when first diagnosed, and stupidly googled, and got myself into a right state about it but there are a lot of treatment options available now. Get that appointment ASAP. Try paracetamol and ibuprofen together, and stop typing if it hurts and get to bed if you can. Go to your GP to get some stronger painkillers too. I was given naloxone which helped much more than ibuprofen.

Vole has good advice, I have also found the RA nurses to be really helpful so try to get to see them too if possible.
The other thing I found is that there are certain foods that trigger a flare-up, I think they're different for everyone, and some people might not be affected by food at all, but worth keeping a food diary and seeing if there are any correalations between flare-ups and food groups. Unfortunately it's chocolate and red wine :-( that set it off for me but it's helped a lot to know this now.

x-posts. No coincidence at all with the pregnancies and BF, as it is fairly common that RA gets much better during pregnancy. Your immune system is dampened down (for want of a better expression) during pregnancy and so RA tends to get much better too since it's an auto-immune disease.

OHforDUCKScake Sun 29-Sep-13 21:01:09

Right this has been incredibly helpful and reasurring Im going to save this thread as I may well be back in the near future especially if it is RA once they do a blood test (presumably they will since thats what they wanted to do before).

Thank you!

OHforDUCKScake Sun 29-Sep-13 21:02:32

Ah right!! Not a coincidence!

Hmm... Not sure Im up for another baby although 9 months of drug free pain free joints would be lovely. wink

LostInWales Sun 29-Sep-13 21:26:39

Freezing do you still take the Sulfasalazine now? I'm only in my first week, I'd presumed that after about 6 months that would be it! I wasn't worried to be diagnosed, I've spent so long going to the GP 'look, this really isn't normal, my joints shouldn't be wearing out so quickly' (I had a bone scan that showed active arthritis in nearly every joint, large and small), I had to really push for a rheumatology referral. GP's comment 'well if you really think so' hmm. I'm actually overjoyed to have a consultant who said 'this isn't right, you shouldn't have this level of degeneration so young, we'll test your blood but take these they will help'.

My joints crack like a cannon Duck, I daren't turn my head for fear of deafening myself wink. Although on that subject in a rare thing I am almost totally deaf now after the bones in one ear fused and now the other ear is following suit. It could be something unrelated apparently but to me as the first ear started to go when my back first became bad and the second ear went really bad after a big flare up I've just had it seems like a huge coincidence.

Yes still taking sulfasalazine now. I wasn't expecting to be on it so long. When I was first diagnosed, the consultant was expecting to move me quickly through the treatment pathway and started me on this as it was the only thing safe for pregnancy and BF. But 5 years later it's still working (just). I think I'll be moved onto methotrexate once I've finished with BF as we're probably not going to have any more DC. I do have a small amount of additional joint damage but for the most part sulfasalazine has been very good for me. I hope it's as effective for you. Fusing of your ear bones does not seem good.

OHforDUCKScake Mon 30-Sep-13 08:22:24

LostInWales thats fucking horrendous. I would be seriously considerimg doing something about that GP, not getting it early clearly has lasting effects. I would be very very angry if I was you.

LostInWales Mon 30-Sep-13 09:13:36

We live in a VERY rural place and there isn't much choice for Dr's I'm afraid. Anyway I get the bonus of slipping the batteries out of my hearing aids if it's too noisy, an absolute bonus if you are at children's parties in the sports hall grin. Plus it could be something hereditary and completely unrelated (although I doubt it) but I'm adopted so I'll never know.

Sorry 2Fed I'm completely stealing your thread but there are so few of us around it is ace being able to talk to people my age about it. Freezing how is your immune system? I'm so worried about getting every bug going.

OHforDUCKScake Mon 30-Sep-13 10:56:29

The OP started this thread 4 months ago so hopefully she is ok now.

I bumped it so's not to start another thread about the same thing.

I just got back from the doctors. He has given me Naproxen and a stomach thing to stop it giving me heart burn.

I have a blood test tomorrow and an xray on my hands and wrists on wednesday.

If I take the Naproxen now will it stop the inflammatory markers showing up in the blood they take tomorrow?

LostInWales Mon 30-Sep-13 11:47:50

X-ray how exciting (I'm a radiographer wink) I don't know about the blood test thing. I felt the same and waited until after the test before I took mine but that was more not wanting to take them in the first place because I was scared. Make sure you take them exactly as told, I am buggered now for any anti-inflammatries because I took them willy-nilly for so long. WELL DONE though, you have taken the first step to making life better.

OHforDUCKScake Mon 30-Sep-13 11:52:55

Oh wow, so do you do xrays then?

LostInWales Mon 30-Sep-13 13:26:17

I do, it's an ace job.

Ducks, they shouldn't affect the inflammatory markers. Plus, if they're testing for RA, they'll look at a couple of markers anyway so i would go ahead & take them to get started on managing your pain.

LostinWales. My immune system doesn't seem to be too affected by the meds, enough to help but actually I'm always the last to catch any cold in my family & more often than not I avoid them completely. I reckon I have a slightly odd immune system anyway, hence the RA in the first place confused.
I had many of the same questions & concerns as you and it has been much better than expected. Remember they have to tell you all the side effects & consequences of taking any medication but it doesn't always mean you will suffer from all (or any of them).

OHforDUCKScake Mon 30-Sep-13 14:05:11

Ok I have another question about e xray if thats ok? grin

First of all, how likely is early RA (if thats what it is) to show on an xray?

And, would it make a difference what time of day it is as to what it shows, because during the day its just about bearable, but when I sit down in the evening its terrible. I cant type, text, open lids even sitting with my hands and arms very still it hurts a lot.

So would an xray show more during that time than in the day?

LostInWales Mon 30-Sep-13 14:41:23

x-ray will only show bony/joint damage which will occur slowly over time. I think what you are experiencing is the annoyed joints stiffening through use over the day which is hopefully what treatment will solve. Once bony damage is done it can't be reversed which is why they treat hard and fast now, to get in before lasting damage occurs. Hopefully by reducing the swelling most problems go away and can be held at bay.

I think I was confusing myself Freezing, I thought all DMARD's were immuno suppressant drugs but it seems they all work by different actions to the same end. I have a puking teen today though so I am getting a bit Howard Hughes with the antibac wipes and hand gel blush.

LostInWales Mon 30-Sep-13 14:42:26

Hopefully your new gloves will help with the evening pain/weakness as well. What size did you get?

OHforDUCKScake Mon 30-Sep-13 14:54:22

Ah so its likely not to show anything at all. I hope anyway!

Im hoping the gloves arrive tomorrow, I got size Small, I measured 18cm around the knuckle.

LostInWales Mon 30-Sep-13 15:07:21

Nah, what you want is a tiny but undeniable patch of arthritis in an area that doesn't actually hurt so you can hold out your paw hand and get sympathy wink Can I ask, do you ever get hot spots. The consultant asked me last week if my joints ever got hot and for the life of me I have never thought about it. I get a temp sometimes when everything is flaring up but I've never thought to check my bones too! Good that you got fitted gloves, they need to be a tiny bit snug to give your hand a proper cwtch.

OHforDUCKScake Mon 30-Sep-13 15:56:21

Cwtch, I love that word. I was pushing the buggy first thing this morning and it was cold out and I thought of those gloves and remembered you describing them as a hug for you hand and I was glad I ordered a pair.

I dont recall ever getting hot spots, no. I do suffer general hot flushes which have made me wonder if Im menopausal (I hope not, Im 31!). But I doubt thats related.

candycoatedwaterdrops Mon 30-Sep-13 17:37:22

Far fewer people are experiencing the destructive joint damage that you see when you google "Rheumatoid Arthritis and feet/hands". In the last 10 years, treatment has improved dramatically. I thought methotrexate looked scary until I started anti-TNF drugs and then I freaked. However, I have since had long and detailed conversations with my consultant, the specialist nurses and NRAS who have all assured me none of them are nearly as bad as they sound. You are monitored very closely on these drugs.

I have severe and aggressive RA that has caused joint damage and has never got fully under control. I am told this is unlucky given my early diagnosis. I would urge anyone reading this to never wait, it's not worth it. The pain I get from my damaged joints is excruciating.

Using x-rays to diagnose RA is very outdated, most rheum clinics offer ultrasound scans as they will detect inflammation. I had an isotope nuclear bone scan of my whole body which showed all my inflamed joints but this was privately and I very much doubt the NHS would offer this as a diagnostic tool due to cost.

OHforDUCKScake Mon 30-Sep-13 17:49:55

How much was it candy?

LostInWales Mon 30-Sep-13 17:57:57

I had a bone scan through the NHS, was amazing and scary seeing the amount of active arthritis there was. Not a bit of me is left out <equal opportunities arthritic>. Without it I wouldn't have got my clinic appointment last week.

LostInWales Mon 30-Sep-13 18:03:30

I wonder sometimes how people get on, I've had to be so pushy to find a dr who finally listens to me. I know I get listened to more because I am NHS too, must be so hard for some people.

OHforDUCKScake Mon 30-Sep-13 18:21:27

Ok so if my blood showed RA butbthe xray didnt, what should I expect next?

TheGirlFromIpanema Mon 30-Sep-13 18:22:06

X-rays didn't pick up any signs of arthritis before I was diagnosed...

I took myself to casualty more than once as I believed I had actually managed to snap bones/developed frozen shoulder (all sorts went through my mind grin) Each time they sent me away with a disbelieving look on their faces!
Once though I went to a walk-in centre in town and the triage nurse felt the heat off my shoulder and she seemed to just know it was possibly arthritis by this alone. She wrote a note fro my GP and it was all diagnosed within weeks of that.

I've been taking part in a study on early onset RA with my local hospital and have had lots of ultrasound scans for it. The scans show up inflammation where an x-ray never does, they also measure my joint deterioration and so far (diagnosed almost 4 years now) its all ok-ish. The Doc once said to me that 20 years ago I'd be starting to develop deformities in my hands/wrists by now shock but the study is proving beyond doubt that modern medication has really altered the pattern of early onset RA.

I take methotrexate weekly and sulfasalazine daily, alongside pain meds. I have periods where I am fine for months but times, as now, where I have low-level flare up for weeks followed by a massive one. at the point it gets worse I will take myself down for a steroid which will work. If I have one too early then it won't work. I've learnt how my own arthritis behaves, ifswim.

Ducks I used to buy all sorts to help me manage, some good some useless! Keep trying different things until you find what works for you, we all suffer differently with it and what works for one may not work for another!

Lost I too am an equal opportunities arthritic grin <<links arms>> try explaining to someone that you don't fancy a night out as your jaw is hurting and then watch the looks on their faces hmm grin

OHforDUCKScake Mon 30-Sep-13 18:23:22

Also, LostnWales what were your symptoms like at the time of your bone scan, out of interest?

LostInWales Mon 30-Sep-13 19:38:21

I don't think I'm a very good 'control' tbh as I've had arthritis, visible on x-rays, in my spine since my early 20's (so 15 plus years now) but it's only been the last 18 months the pain in the rest of my body has managed to break through the pain I get constantly from that (already taking tramadol for the back pain). At the time of my scan I had burning pain in my SI joints (almost constant for a year) but also pain in my hands and feet/ankles and just below the base of my thumbs. I always thought I could tell if I was getting a cold/fluey as my pain would ramp up over a week and then I would have a period of agony coupled with what I thought was mild flu but I now recognize this was probably a classic 'flare up'. Plus on the scan my shoulders look terrible and I now realize a lot of pain I was attributing to my thoracic spine was actually my shoulders. So I am really not a classic presentation of anything, I will be interested to see what my blood tests say on Weds.

If your x-ray so far looks clear but your blood test is positive then coupled with your symptoms (there is a scoring system because the blood test isn't 100% either way) you will probably be started on one of the disease modifying drugs and be able to grin from ear to ear because you have caught it early.

<carefully links arms with Ipanemia> I had total spasm in my jaw watching the boys swimming earlier, was so painful and I couldn't do anything but sit there and wait for it to pass. Was worried I must look very odd because I was desperately trying to find a comfy posture! I know, sadly, that I already have a lot of irreversible damage the length of my spine but if I can stop my hands/wrists etc from too much damage I will be very pleased. Sorry you are suffering too.

OHforDUCKScake Mon 30-Sep-13 20:05:52

That sounds really bad LostInWales.

What I have is no wheee near as bad as you, but I know exactly wha you mean about the burning pain. I get the burning pain in bottom of my thumbs running between my painful wrist and elbow.

Conversely, tonight Im almost pain free. Despite having not taken any meds today.

For the first time in 2-3 weeks Im not in pain.

Im now worried the xray and bloods will be negative and they will send me on my merry way hmm. Because something is wrong, whatever happens.

LostInWales Mon 30-Sep-13 20:19:49

I hate that feeling so much! If you have been bad all the time apart from right this second then I'm sure they will take you seriously and if there is anything to show on the blood test it will be there. Also a lot of the diagnosis comes from your testimony, so if you can say about the length of time you have had pain and the different places it is they will have to listen to you. I think though, although I have big bits of me that hurt, we can only feel so much pain, so your burning pain between thumbs and wrist/elbow will be equally awful to how your head feels about it all. Pain is pain after all.

candycoatedwaterdrops Mon 30-Sep-13 20:25:00

I didn't pay for my bone scan, I had private health insurance which covered it. I had it in an NHS hospital and the radiographer commented that it's an expensive scan that the NHS rarely offer to diagnose inflammatory types of arthritis.

Duck I would expect your x-rays to show nothing for RA. It might show another condition but unlikely RA. Also, I'm not sure if you have red, hot and swollen joints but if you do, it's a bad idea to apply heat to actively inflamed joints. Ice is my friend when I'm swollen.

LostinWales I thought sulfasalazine is an immunosuppressant like other DMARDs too but now reading a little bit about it, it seems to be more of an anti-inflammatory. However, having said that, I had a couple of bad chest infections a few years ago and the respiratory consultant seemed to be a bit worried that I was on sulfa as it was potentially making me more suspectible to further chest infections, so now I'm also confused Anyway, I hope it helps you. You really have a bad time of it, I'm sorry for you, but at least you are now being seen properly.

DUCKS About the x-rays, I don't remember that I had an x-ray in order to diagnose but my Rheumy likes for me to have annual x-rays of my hands and feet to monitor any changes in joint damage. Very glad to know you aren't in pain tonight but if you have RA your bloods will show it, I'm almost sure. And you know something is wrong so keep pushing for a referral. It might not be RA, and if not it's for the consultant to work out what else it could be.

LostInWales Mon 30-Sep-13 21:03:14

I think the bone scan was to look for inflammatory SI joint problems then I would be able to have the pain killing injections but instead of showing just that it showed up a veritable light show all over my body. I had to have an extra scan to show it wasn't something more sinister causing all the 'hot spots'. Then I could take my scan and report (bonus of being in the 'trade') to my GP and go look, LOOK, this is not right, and then she was still grudging about sending the referral.

Candy having had a good look on wiki the internet this afternoon, I think it does work by suppressing the immune response, or at least the inflammatory response of immunity, just not in as much a fashion as methotrexate. Probably why it is the first drug they use. There is nothing quite so terrifying as the thought of a drug which is essentially chemotherapy (although sulfasalazine works to reduce tumors too I think so my hypochondriac bits are thinking 'well at least that is covered if there is anything else lurking wink)

OHforDUCKScake Tue 01-Oct-13 07:58:41

Good point LostInWales!

Hoping the gloves arrive today. Blood test is morning, hopefull have the results Friday, will report back.

candycoatedwaterdrops Tue 01-Oct-13 09:40:12

Lostinwales Yes, the idea is that people with inflammatory arthritis have overactive immune systems, so they suppress the immune system to avoid it attacking the joints. This can leave you at risk of infections and viruses and bugs though. I'm on 3 different immunosuppressant drugs for my RA (2 DMARDS and an anti-TNF) and really hoping they take me off one soon as I have a permanent cold and frequent stomach bugs not to mention the thrush!

candycoatedwaterdrops Tue 01-Oct-13 09:42:15

Actually I lied, anti-TNFs work a bit differently to some of the DMARDs.

LostInWales Tue 01-Oct-13 12:54:01

It's a bit confusing isn't it confused. Thrush, what joy, you just don't think of that when you think of all the crappy side effects but I bet that's one of the most annoying.

I am bone tired today, can't decide if it's the medicine, the illness or just a damp tuesday. Thank goodness for strong coffee. Get my blood test results tomorrow morning Ducks so we are both in for an interesting week.

OHforDUCKScake Tue 01-Oct-13 13:08:27

Good luck Lost what is it they are testing for? To see if the meds have worked?

I had mine done this morning, they said wait a week but its usually much faster so I will call the thursday or friday.

Gloves havent arrived, and wrists aching like a bugger so Im taking the Naproxen today.

I know what you mean about tiredness, my whole body was wrecked yesterday I was stood in the kitchen cooking dinner and just wanted to cry. Kids in bed by 7.30 and I was in bed by 8.30.

Im starting to worry that the bloods wont show anything, is it weird that I hope they will? I just want to find out whats causing this so I can go on and hope they start fixing it.

LostInWales Tue 01-Oct-13 15:08:02

No these blood tests are the pre medicine baseline and to check for RA markers, I have the Sulfasalizine purely on my bone scan. I know exactly what you mean about blood tests, I really want something to show up or I will feel like some kind of fraud IYSWIM? Argh, it's not like my bones are in great shape but some marker in my blood would help me make sense of things.

mineofuselessinformation Tue 01-Oct-13 19:24:54

Can I join in? blush I've always had dodgy joints (back, neck, mobility in thumbs gone for 15+ years and 'arthritic changes' / bunions in my feet), but in the last six months some of my joints have got very clicky, my hands have lost mobility in some fingers - with some joints painful. I apparently have a spindle shaped something or other in a finger? and now my hip gives me hell if I drive for long distances.
I've tested negative for rheumatoid factor and ccp. No X-rays done. I'm due to see a rheumatologist at the end of the month.
I know most if not all of you on here are suffering way beyond what I am, but I'm a bit lost and not knowing what might happen - and terrified of them patting me on the head and telling me to bugger off.

LostInWales Tue 01-Oct-13 22:22:59

Hullo mineof, you are in the right place with us, we know how frustrating it can be and how much you want something/anything to come back positive to make everything make sense. Great that you have a Rheumatology appointment, the blood tests aren't everything and they will listen to how long and how many joints are a problem before they make a decision, keep us posted on how you are.

OHforDUCKScake Wed 02-Oct-13 08:22:11

Hello mine it must be very frustrating having had no answers yet, I fear my blood test showing nothing. Even though I know not all RA sufferers will have it show up in bloods necessarily. I feel like I need to know.

Theres not too long a wait until your appointment now so thats something. Are you on any meds?

I took Naproxen after the blood test yesterday, a day when my joints were being particularly painful. He said it was like neurofen. Because neurofen doesnt touch the sides I asked for something else, said I doubt very much it will work. But he was insistant I tried these first and Im glad he insisted because they really, really worked. Id say they reduced the pain by 70% where as neurofen didnt appear to make a dent at all.

Lost let us know how your blood results are today. Good luck.

LostInWales Wed 02-Oct-13 09:07:28

I think 'like' ibuprofen as in it is non steroidal anti-inflammatory but a hell of a lot stronger would be a better was of phrasing it grin. So glad it worked for you, make sure you try and keep the dose to a regular schedule even if you aren't in pain at the time you take it and you should see a huge difference. Do I need to do 'Losty's lecture on NASID's and your stomach health'? again wink.

Looking forward to seeing my blood test today although as it's my GP's I am fully expecting to not have it, to be the wrong persons etc, etc. Really worried she will say 'stop taking your drugs because you have bad kidneys/liver' after all the medicine I have taken over the years.

Urgh, it's a horrible dark day here, I feel like putting all the lights on to clear some of the gloom.

OHforDUCKScake Wed 02-Oct-13 09:19:05

No I dont think you do because I had that in mind when I went and I asled him to give me something, he prescribed Omperzole (sp) is that the right stuff?

Can I have a moan please?

I bought a car from a very dodgy dealer. Its falling apart and dead on my drive having only owned it 3 months. He is giving me some of the money back but he said not until the 21st. Which means Im carless until then.

Ordinarily this would just be annoying.

But right now its absolutely killing me.

I dont know for sure what this joint thing is yet, but whatever it is its flooring me with tiredness. Every inch of my body is exhausted.

On top of that, my 2 year old has mutiple serious health problems which effect every part of his life and he wakes every 30 minutes at night. Its been this way for about a month and its really not helping. He breastfeeds every 30-60 minutes day and night and no one can help at night (single mum) because no one else has my boobs.

I had to walk my eldest to school this morning, then I was supposed to go to a shop to get DS2 his specialist food, then the library to photo copy my driving license for buying a new car, then Tesco to get food for everyone else.

Instead Im at home typing this because I barely made it to school, I was shaking I was so tired and when I got in I started feeling dizzy.

Its past now and the naproxen has kicked in for the pain but the exhaustion remains.

LostInWales Wed 02-Oct-13 09:47:21

Jeeze I'm not surprised you are tired with all that going on, do you make sure you eat well and get enough iron/vitamins/minerals? That's enough to floor anyone let alone with joint problems on top.

LostInWales Wed 02-Oct-13 11:51:56

Ha, told you, results aren't there! Never mind, surgery was only running 30 mins late and I had a chat to the dr and reduced some of the other medicines I take. She's a nice lady.

OHforDUCKScake Wed 02-Oct-13 11:54:15

Are they going to chase the results up?

Tbh what I always do is ask for the results over the phone because they always come before the appointment is available.

Then I can get my head round the results before the appointment.

candycoatedwaterdrops Wed 02-Oct-13 12:02:22

Just realised my 6 weekly bloods have not been done for nearly 3 months. I don't know if the hospital pharmacy will do my next prescription. Fuckity fuck. confused

LostInWales Wed 02-Oct-13 12:55:09

Uh oh! Time to make an appointment candy, I'm sure they will rush stuff through because there is no way you can stop what you are taking overnight.

Wanted to see the GP anyway about my insane restless legs, so I can phone next Monday to see if the results are there. Decreasing my omeprazole as I am symptom free and stopping a sleeping tablet all together because I am a lot happier at the moment (honestly if I told you all the things that had happened over the last 6 months you would think I was a troll or someone researching for a book!). So those two things will hopefully help control my legs and I have the blood test thing for in three weeks time organised, plus it was nice to say hi to her and let her know what rheumatology had said.

OHforDUCKScake Thu 03-Oct-13 10:09:40

My blood test results are back.

All normal.

Im gutted! I have all the symptoms, I really hope they arent going to send me on my way now? The thought scares the crap out of me. I will make an appointment tomorrow with the GP, but is there any other way they can look?

I mean, they wont pay for a full body scan but can they do specific scans on my hands and wrists?

bigfatfeet Thu 03-Oct-13 12:26:23

You can have normal bloods and still have RA (or one of the other inflammatory arthritises (arthriti?)) - if I were you, I'd be asking the GP for a referral to a rheumatologist as they can diagnose you on your symptoms alone, but could also order further scans, ultrasounds etc.

Be really honest with your GP tomorrow about the extent to which this is affecting your life, and don't take no for an answer! Good luck.

LostInWales Thu 03-Oct-13 15:03:01

I had a 'normal' blood test about three years ago when they were looking at my back specifically but my bones have definitely degraded over that time. Still press for rheumatology, they can ultrasound to look for active disease and I think I read about a different blood test that is coming through. This isn't the end of the road just one of the steps on it.

OHforDUCKScake Thu 03-Oct-13 17:23:40

Thank you. I will push for a rheumatoid appointment, I will pay privately for a scan if I have too.

wonkylegs Thu 03-Oct-13 17:47:10

I have RA diagnosed 15yrs ago, my bloods weren't positive for Rfactor, but that is only one of several indicators for diagnosis. You need a referral to a rheumatologist, who can make a proper diagnosis based on examination and questions.
You may not get scans, I've only had them for specific injured joints or for specific proceedures.
I do get periodic x rays of my hands & feet, to check progress but otherwise they treat my symptoms.
I have a high DAS score which coupled with various treatment failures meant that I was eligible for Anti-TNF treatment which is simply great for me.

candycoatedwaterdrops Thu 03-Oct-13 18:38:16

Duck Do you know what they tested for? About 30% of people are rheumatoid factor negative for RA but usually something will show up in inflammatory markers; ESR and/or CRP. It's very rare to have RA with normal inflammatory markers and normal RF - according to my rheumy. Do you have a copy of your blood test results and if not, ask and we can help you interpret them if you want?

OHforDUCKScake Thu 03-Oct-13 20:42:34

Hi Candy I took a sly photo of the print out of what he wanted to test for, there was quite a few it looks like he tested for everything

Anti-nuclear Ab
Anti-neutrophile cytoplasmic Ab
C reactive protein level (CRPS)
Electrolyte and Cretinine (ECS)
Erythrocyt sedmentation rate (ESR)
Full blood count (FBC)
Rheumatoid factor lecel (SRF)
Thyroid function test
Urea Level

And all was normal.
I asked for specifics for my HB and Rheumatoid factor, the HB was 11.9 and the Rheumatoid factor was 'less than 10'

And 'all of the, are normal'

MrsStarwars Thu 03-Oct-13 21:08:27

I was diagnosed with RA about 3 months ago and was tested for all the same things you've listed above plus anti CCP antibodies. If this is positive, and at a moderate or high level it can help confirm the diagnosis of RA and may indicate you are at more risk of joint damage, low levels are less significant. Might be worth asking your GP for this blood test too. I had positive rheumatoid factor plus positive ccp, thankfully it has been caught early and there is nothing much to see in the X-rays that is out of the ordinary. I'm currently taking methotrexate, hydroxychloroquine and naproxen. I'm due for a review with the rheumy in 2 weeks but things have been much better since starting the treatment. Hope you can get some answers soon.

Hey, just popping in, I have psoriatic arthritis (PsA) which is basically the same thing as RA, but linked to psoriasis. Am still breastfeeding ds2 so cant take mtx, but on sulfasalazine, 1g naproxen, omeprazole and lofepramine, plus depomedrone injections every three months. Nothing has so much as dented it yet since I was diagnosed this time last year.

Ducks, PsA has none of the markers for RA, if that possibly helps?

mineofuselessinformation Thu 03-Oct-13 21:30:27

Hello again.... Just coming back to ask a question.
My hip has been painful recently, escalating to screaming pitch when I drive for more than 30 mins. I need to do a 1 1/2 hr drive on Saturday (and back again - I'm dreading it) so wondered what the best combination of painkillers and anti-inflammatories is? I have paracetamol, ibuprofen, diclofenac and codeine. I know I can't take the ibuprofen and diclofenac together--and don't want to be off my face when driving--. Should I start taking the max dose of paracetamol the day before (a gp told me that I should really try to keep a level in my system) but usually try not to take anything unless I really need to.
Probably a slightly dim question blush but thought someone could give some advice.

LostInWales Thu 03-Oct-13 21:57:17

AS someone who has more than she really wants experience of managing pain, paracetamol and the like are much more effective if you keep the dose up over a period of time not just when you start to have pain. If you have a happy liver etc etc I would start now, taking the appropriate max dose for the day over the correct intervals. This should help a lot. Also tag teaming with an anti-inflammatory (see 'Losty's short lecture on NASID's and stomach health' wink ) So if you can take paracetamol 4 times a day and ibuprofen 3 times per day (check it's a while since I've taken either) try and make it so you can spread each of the type of pills out so you never come to the end of both at the same time IYSWIM. Then get the children to bed and take the codeine and get a heat pack on your hip when you get home!

mineofuselessinformation Thu 03-Oct-13 22:04:42

Thanks Lost. Sorry if I've trivialised what you or anyone is going through. (I know things could be SO much worse for me than they are.)
I will start tonight and stop being so lazy about it. smile

mineofuselessinformation Thu 03-Oct-13 22:05:53

Oh and I do know about omeprazole and the like - dd had to take it when on a high does of steroids.

LostInWales Fri 04-Oct-13 07:52:32

There is nothing trivial about pain of any sort. I don't think people are educated enough about how to use painkillers which is such a shame because they are really helpful!

candycoatedwaterdrops Fri 04-Oct-13 08:24:16

Beyond Did/do you have normal CRP and ESR?

candycoatedwaterdrops Fri 04-Oct-13 16:50:53

I meant to say this morning but was in a rush....

Duck - have you looked into fibromyalgia? That can cause the symptoms you describe.

OHforDUCKScake Sat 05-Oct-13 20:47:40

Thats been mentioned to me a couple of times actuall so I looked at e symptoms and no thats definitely not me at all. I couldnt identify with any of the symtoms.

My mum has polymyalgia (which isnt as bad as fybromyalgia) and her symptoms dont match mine at all either.

mandmsmummy Sat 05-Oct-13 20:52:42

Anyone had side effects like breathlessness from naproxen, ibuprofen? X

OHforDUCKScake Sat 05-Oct-13 21:13:58

No I have no side effects from either, thankfully. Do you have asthma? I know ibruprofen can be a trigger.

candycoatedwaterdrops Sat 05-Oct-13 21:26:21

Do you have joint swelling, Duck? What are your symptoms, if you don't mind me asking?

mandmsmummy Sat 05-Oct-13 21:28:14

Not as far as I know duck! But they are having that effect on me. X

OHforDUCKScake Sat 05-Oct-13 21:52:22

I dont think Ive had swelling no.

My wrists joints are very very painful, radiating at the outer joint where the knobbly bit is, and my knuckles are very painful and stiff in the morning. The bottom of my thumb joint causes me awful burming pain.

I have pain in the elbows, knees and when its all very bad, in my shoulders.

My joints crack during a flare up, but not im between when Im fine.

I have typical symtoms of carpel tunnel and have done for about 6 years and regularly wake up with hands blown up to 3 times the size (think blown up marigold!) and pins and needles.

Im slim and not over weight so I cant blame that, as I know weight can effect joints.

Ive also been getting horrendous fatigue, this is the first night in a week Ive been up past 8.30pm.

OHforDUCKScake Sat 05-Oct-13 21:53:54

I also got a searing pain at the bottom of my hand/top of my wrist a few weeks back, ran it under the tap as the pain was that bad and within 30 minutes a huge long black bruise appeared and stayed there for about 2 weeks.
I forgot to tell my doctor this, I have a picture will show him monday but I have no idea if this is related.

candycoatedwaterdrops Sat 05-Oct-13 22:11:10

In my completely unprofessional opinion, it's very unlikely to be an inflammatory type of arthritis given you have no/little swelling and no inflammation showing up in your blood. Have you been tested for vitamin D and thyroid?

OHforDUCKScake Sat 05-Oct-13 22:20:57

Oh I see. I didnt know that. It hurts to touch my wrist, but I cant see any swelling, I dont think.

My thyroid is fine. Dont know about vitamin D.

I suppose I will just have to keep taking painkillers then and never knowing what it is. This thought is a pretty awful one though. It makes me feel quite sick having to just deal with all the pain and tiredness and not know what it is thats effecting my life so much.

mandmsmummy Sat 05-Oct-13 22:26:55

I don't have swelling or imflammatory in my bloods but I have ankylosing spondylitis (an imflammatory arthritis) x

candycoatedwaterdrops Sat 05-Oct-13 22:34:20

Oh yes, that's true but arthritis of the spine presents differently. Apparently, it is difficult to detect swelling in joints such as; spine and hips but for hands, wrists, elbows, knees etc - swelling in inflammatory arthritis is generally obvious, if not to the patient, definitely a medical professional.

mandmsmummy Sat 05-Oct-13 22:44:28

Yes you're right x

I don't know the exact result of my bloods, will see if I have them around anywhere. But even if my blood didnt show swelling, it is very obvious to look at (think sausage fingers... how attractive )

OHforDUCKScake Sun 06-Oct-13 11:34:22

Ok candy I need more of your opinion. This morning, I decided to stop Naproxen for a few days to see if there did end up with any swelling.

However, I took my hooj Ice Watch off and noticed that there is most definitely more swelling on my left side in comparison to my right.

However, first of all could it have been like that all my life because Ive only looked now!

Second of all, there is no heat.

Third of all, whilst all my joints hurt together, i.e both wrists, both knees, both elbows, my left wrist is a deal more painful and stiff than my right. My right IS painful and stiff but shouldnt they be 'even'? I thought the eveness of the pain was a symptom of RA?

And lastly, does anyone know how to upload a photos from an iphone to MN? Then I can show you the difference in size.

candycoatedwaterdrops Sun 06-Oct-13 19:55:23

Anti-inflammatories have never really touched my swelling and I think (but couldn't be sure) that they generally don't do much for this type swelling or else rheumatologists would use them instead of stronger drugs. I find celebrex (the only anti-inflammatory I've ever been on) eases my pain a little but nothing else.

There was a campaign called the S factor. The signs of early inflammatory arthritis are the swelling (persistent in joints), stiffness (early morning that lasts more than 30 mins) and squeezing (does it hurt when squeezed).

RA does tend to be bilateral but not always. When they say bilateral, they include the swelling and stiffness as well as the pain. I wouldn't stress too much wrt to being bilaterally affected. I am affected on both sides but my pain is worse on my right side, probably because I'm right handed and use it more.

I have been diagnosed and undiagnosed with RA more times than you can shake a stick at. Sometimes they call it RA, sometimes they say I have an unspecified inflammatory autoimmune disease. I have no rheumatoid factor in my blood but my ESR is always very high and my CRP is usually slightly high. They are treating me as RA in order to get me access to the anti-TNF drugs with more ease. I am fitting the NICE criteria to get the drugs, so I assume it is RA but at this point, I don't care what it's called, I would just like to be able to walk without crutches again!

OHforDUCKScake Sun 06-Oct-13 21:31:12

I get stiffness for about an hour in the morning, and it flipping hurts to touch never mind squeeze.

Although, when the painkillers are working, it doesnt hurt when touched. In fact I just squeezed then and its not painful.

I tried to not take the Naproxen today and I lasted til 2pm before the pain was too bad.

Who knew the reason for joint pain could be so complex hmm.

It is arthritis awareness week this week
i've started a thread in chat, if anyone wants to contribute? smile

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