Advanced search

Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns we suggest you consult your GP.

Rheumatoid Arthritis?

(33 Posts)
ihearttc Mon 13-Jul-15 16:12:42

Can someone talk to me about RA?

I went to the doctor about 3 months ago with painful swollen fingers-they felt like I had toothache in them. GP did blood tests-I think Rheumatoid Factor, ESR and CRP levels and they were all normal. She said my inflammation marker (no idea what test that was) was a teeny little bit raised but nothing to concern her really. She referred me to see Consultant at hospital just to make sure. In the meantime we went on holiday (Dubai so rather hot) and just before we were due to come home my ankles swelled up. They were so swollen you couldn't even see my ankle at all. By the time I got off the plane in London I could hardly walk. Ended up at Out of Hours GP the next morning who said it was probably a combination of heat and lots of walking causing an arthritic flare up. I said that GP had wondered about RA and he said it was very unlikely. He gave me Naproxen and some steroids but I only took 2 of each and it settled down.
Since then it hasn't been too bad. Slightly stiff in the morning but nothing Id really worry about. I finally had my appointment with the Consultant on Friday. To put it mildly it was a very strange appointment. She agreed that I had no markers for RA on my bloods. I have Pernicious Anaemia and she wasn't remotely interested in that at all despite that being the main reason the GP referred me (apparently PA goes together with RA sometimes). She examined me all over and squeezed all the joints of my hand and asked if it hurt. So I said no it feels tender (as it would if you pressing really hard on any small joint) but not painful yet she marked it as I said it hurt.

I asked if I could be tested for Vitamin D defence as lots of my symptoms seem to suggest that as a possibility and she laughed at me and said that was impossible and refused to test me.

At the end she said she will treat for Inflammatory Arthritis (which Im assuming is RA) and I will get an appointment in the post to see a nurse to get Methotrexate and another medication Hydro something??

I had another blood test done and then left.

No explanation as to why I need the medication at all. It seems a huge huge leap for me to go in with a slightly stiff and painful ankle to taking those medication? Im really wondering if I could tell the nurse that I don't want to take them yet or is that completely crazy.

ouryve Mon 13-Jul-15 16:22:52

Methotrexate is pretty drastic stuff to be giving you on what appears to be a hunch. You need special training to use it because it's so hazardous. And vitamin D deficiency isn't impossible, but you can self treat that one, if you think it is possible.

So, of course you should tell the nurse that you're not comfortable with methotrexate, just yet.

Incidentally, I presented with similar problems with my hands, a little swelling, but lots of stiffness, weakness and loss of function, but had no markers for inflammation. I was allowed to book my own consultant appointment and chose a non-inflammatory arthritis clinic, where I was diagnosed with hypermobility syndrome. So my symptoms were a combination of muscle pain, joint strain and the beginnings of osteoarthritis caused by joints being unstable for 40 years and put a lot of final pieces into a jigsaw I'd been struggling with since my teens.

If you think the consultant just did a bit of a ticky box exercise without really paying much attention to you or answering any of your questions, given that there's a lot at stake, it would be very reasonable to ask for a second opinion.

Sidge Mon 13-Jul-15 16:25:48

Well swelling, morning stiffness and tenderness can all be signs of inflammatory arthritis (RA).

It sounds like she wants to treat the symptoms rather than the blood results (my consultant does the same).

Methotrexate and hydroxychloroquine are common medications to get started on to reduce the inflammation. Your GP should manage the pernicious anaemia, that isn't really the Rheumatologist's remit.

Did they give you any written info, eg leaflets? Have you got a follow up appointment? You could certainly wait to see the specialist nurse and discuss your concerns with her before starting any meds, the specialist nurses at my hospital are ace and very knowledgeable.

wonkylegs Mon 13-Jul-15 16:44:46

Markers in blood are not always present (sero negative RA) and diagnosis is usually done on a combination of bloods, observation (that was the squeezing of you joints) and symptoms you present.
I don't have bloods with clear indicators yet I have quite aggressive RA.
The fact that your swelling went down with a combination of naproxen & steroids sound like it was an inflammatory response and that treating with drugs that treat this would make sense.
MTX & Hydroxychloroquine (I'm guessing that's what you mean) are common drugs to treat RA from the start. Treatment has changed over the years to become more aggressive earlier on as research has found that there is less long term damage this way.
However this said MTX is a particularly scary drug and somebody either consultant, SHO or specialist nurse (depends on how your hospital does it) should be discussing how you take it, the importance of blood monitoring, side effects and taking it with folic acid, oh and depending on age (not gender men must take care too) - the need for contraceptives. It is scary but can also be great which is why it is used so much
If you are unsure then ask for another appointment to be talked through it all. To be honest it's nice to hear that your GP reacted fast and referred you and you got seen and on a treatment plan pretty rapidly as I have heard more stories of people getting very very slow diagnosis. I had to beg to be referred as my GP simply said I was too young to have RA so I couldn't have it (this is bollocks by the way and I swiftly got rid of that GP)
I had to battle to get good treatment and now have an absolutely fab consultant who I now travel to see even though we've moved away as we have built a good working rapport over the years.
So go back and talk to them again. Make a list of questions if you need to.

happymonkey13 Mon 13-Jul-15 16:45:58

Hiya, by any chance were your fingers swollen like sausages? You could have psoriatic arthritis rather than rheumatoid. It's a close cousin of RA - your body attacks the joints and it is linked to psoriasis. It would explain why your rheumatoid factor was ok but joints swollen. If you have psoriasis you have a 10% chance of developing PA but a few people get the arthritis first and the psoriasis follows. I was diagnosed with PA a year ago and skin still ok. I am about to start methotrexate next week as I was pregnant then breastfeeding. The current thinking is to treat inflammatory arthritis really aggressivally as soon as possible after diagnosis to minamise joint damage, which is why they will have put you straight on methotrexate. It is scary stuff (I am very nervous about starting) but if it slows down the disease it will be worth it.

Sidge Mon 13-Jul-15 16:51:34

wonkylegs I'm like you in that I am seronegative and my CRP and ESR have always been largely normal. Even when I was diagnosed and suffering terribly my CRP was only about 7! However on ultrasound I had enormous levels of inflammation.

My consultant says as I am youngish and otherwise healthy I compensate well, hence the largely normal bloods.

I've worked my way up the ladder and am now on subcut mtx, sulphasalazine and now Humira (I didn't get on with hydroxychloroqine) and so much better.

ihearttc Mon 13-Jul-15 16:54:46

sidge no the Pernicious Anaemia is being taken care of by GP (I have 12 weekly B12 injections) but it took 2 years of not being listened to before they finally worked out what it was. What I meant was the whole reason that the GP referred me was because of my Pernicious Anaemia and my symptoms-she said without the PA she wouldn't have referred so early. It was only because the PA is an auto immune thing which can also be linked to RA that she wanted the Consultants opinion. I assumed (probably wrongly) that seeing as both are Auto-Immune Diseases that the Rheumatologist would be interested in both.

I saw GP today and actually booked a blood test for Vitamin D so at least I will know one way or another-its just they were already doing tests so thought adding another one would have made more sense. Ive got some Vitamin D here already to take but I wanted to know if I was deficient first (mine is 5000 i u I think thats about the right level?)

wonkylegs Mon 13-Jul-15 17:00:43

Sidge- I'm on Humira too usually with Etodolac & MTX but since we've been TTC I've dropped the MTX and am trying to cope with steroids instead.... Really missing the MTX hmm

ihearttc Mon 13-Jul-15 17:02:02

I think Im just scared tbh. I was there completely on my own and its frightened me. Im 38 with 2 boys (one is 10 and the other is 4) and a husband who works abroad.

It was just the blasé attitude of the Consultant which bothered me. I got given a Leaflet thats all. They said they will be in touch to make an appointment to have some X-rays done and see the nurse to get medication. I expected to get Anti-Inflammatories and exercises not to be put on a drug regime like that...and yes it must have been Hyrodroxychloroqine.

How bad are the side effects of the Methotrexate? Its that which is scaring me more than anything. Ive just got a voluntary job in my son's school for september with a view to completing TA training but is it going to ruin my immune system? Im assuming there is no other treatment other than Methotrexate?

ouryve Mon 13-Jul-15 17:08:01

I know people who take it and can pretty much get on with a gentle version of their day and others who end up spending the day vomiting.

wonkylegs Mon 13-Jul-15 17:16:43

Iheart - I'm 36 was diagnosed at 19. Honestly I've never had a problem with MTX even at 20mg dose I had no real side effects, a tiny bit of nausea at first but then I started taking it on a Saturday night before bed, so I was asleep when I felt nauseous and therefore it didn't bother me. I can even drink moderately with it which I know not everybody can.
I've had a much bigger problem with anti-inflammatories which gave me terrible indigestion or in the case of naproxen terrible stomach ache.
I know of people who have tolerated it very well and others who haven't honestly the only way to find out how your body copes is by trying it. You can stop if it's a problem. Usually they start you off on a lower dose to see if that works and then add to it if necessary. The worst side effects usually come with larger doses.

ihearttc Mon 13-Jul-15 17:24:19

Thank you Wonky thats really helpful.

Will get Vitamin D test done and go to appointment and see what they say regarding dosage etc.

Sidge Mon 13-Jul-15 17:26:08

Ahh I see what you mean about the PA Iheart.

I understand the scared feeling. I got diagnosed December 2012, 6 months after I became a single parent, I have 3 children 1 of whom has significant SN and disabilities. I work in a pretty physical job and just thought "how the hell am I going to cope?"

I have been fine on methotrexate; despite working in primary care as frontline healthcare staff I have had no immune issues but I do avoid patients with unknown rashes. IME they like to go in hard with treatment for IA to avoid joint damage and achieve remission as quickly as possible. Anti-inflammatories don't fully tackle the root cause and shouldn't be used long term, and physio is useful but again won't solve the underlying disease.

Hope all goes well for you.

RandomMess Mon 13-Jul-15 17:28:49

DH only need to be on Metho for 9 months for his Arthritis around 4 years ago, since then although the pain and tiredness fluctuates it has no way got as bad again.

Bohemond Mon 13-Jul-15 17:40:05

I wish they had had MTX when I was diagnosed. I have no RA now fortunately but two attacks in my teens and early twenties gave ruined my ankle and elbow. Talk to the nurse - they are very knowledgeable.

ppeatfruit Mon 13-Jul-15 17:40:39

If you want to cure it without the drugs have a look at the Hay diet and The Blood Type . My gran. had terrible RA and when I was in my early 40s I started waking up with bad aching fingers so I studied eating for health and discovered the former ways of eating. Which work , I'm 64 and in amazing good health.

Good luck . Oh echinacea and ginger are good ways to tackle inflammatory problems too.

ihearttc Mon 13-Jul-15 17:41:34

See sidge thats why I posted on here...thats exactly what I wanted to hear!

At the risk of sounding stupid what exactly does MTX do for me? Will it stop my ankles from feeling stiff cause thats the main issue at the moment?

ihearttc Mon 13-Jul-15 17:43:07

The consultant mentioned Remission?? Is that what has happened to your husband randommess?

wonkylegs Mon 13-Jul-15 17:52:43

MTX is what they call a DMARD (disease modifying anti rheumatic drug) which will slow down the progression of RA so in other words it treats the disease that is causing the pain, stiffness & fatigue.
Rather than anti inflammatories & steroids which treat the symptoms.
This usually means you get a reduction in symptoms because you are treating the cause. It can take time to take effect though so don't be disappointed if it takes a while for you to notice.

emsy123 Mon 13-Jul-15 17:53:59

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

wonkylegs Mon 13-Jul-15 18:09:25

Rheumatoid arthritis is a serious disease that left untreated can cause disabling and irrevocable damage to joints, lungs and your heart. So although you may look to alternative healthcare to support your traditional healthcare and perhaps relieve some symptoms I would urge you to ensure you work with your drs to treat the underlying disease properly.

dontthinktwiceitsalright Mon 13-Jul-15 18:35:12

Sorry about what you're going through iheart. Like an above poster I have psoriatic arthritis which I believe is very similar in symptoms to rheumatoid arthritis . I'm also anaemic .

I started methotrexate at the start of this year and it's been really good for me . It's not a fun drug but once your body gets used to it it's not too bad and my joints have been so much better , no more bad flares .

If you do go on it , try not to worry . If it doesn't work for you there are loads of other drugs to try and your blood is monitored every few weeks to make sure there are no problems .

Good luck op

ihearttc Mon 13-Jul-15 18:35:58

No don't worry Im going to listen to the doctors/nurses...I do want to make sure its not anything to do with Vitamin D first though but will only be taking stuff advised by Doctors.

wonkylegs Tue 14-Jul-15 08:16:06

Sorry that was a bit of a stern post from me but in the 17yrs I've had RA I've heard an awful lot of people who know somebody was 'cured' by drinking this or not eating that. If it was that easy and they actually worked then I wouldn't be taking all the drugs & hospital appointments and I'm pretty sure in this age of budget cuts the NHS would only be too happy for me to be cured on the cheap if that was what they actually did.
I'm not saying that for some people these alternative ideas may help alleviate some symptoms but most people sell them as a 'cure' which is dangerous. Arthritis is often considered by many as serious as 'ah well we all get it when we are old' but that stems from a misunderstanding that osteo & rheumatoid are different diseases. Sorry
There I go again.... 17 years of this and you become more of a defensive cynic sorry

ppeatfruit Tue 14-Jul-15 09:35:21

It's something that can be helped hugely by changing your diet. It is caused by a high acid diet. If you go on the face book page you will see how many people have been cured., by the Blood Type. Dh had bad crippling gout which is better by not eating pork and pork products, they are high in acid forming purines.

I find it very interesting that soo many people prefer to go to take drugs (that have bad side effects in many cases) than even try to cure themselves ,it does't hurt to help yourself. I do it and there is RA in my family which I know I would have got if I hadn't done something proactive.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now