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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.

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.

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