Confused about RA diagnosis for mild symptoms and low... - NRAS


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Confused about RA diagnosis for mild symptoms and low positive anti-CCP - feeling pressure to take methotrexate

DrJJ profile image

I have been diagnosed with RA for about four years now after going to see my GP with tenosynovitis in one of my fingers and being referred to a rheumatologist for a positive anti-CCP test.

I have been on hydroxychloroquine for a few years and my finger is back to normal now, and from time to time I do get joints aching but nothing major. Last summer I felt that things were progressing, and my rheumatologist has increased my hydroxychloroquine dose and I feel much better overall. In fact I don’t really feel like I have RA at all most of the time. All my blood tests are normal apart from the anti-CCP.

My mum had severe joint issues when she was around my age (45). She was never diagnosed with RA and she never got a definite diagnosis for her problem (they didn’t have the anti-CCP test back then). She is now in her 70s and feels a whole lot better than she did when she was my age (her words!) She tried methotrexate at one point and had an extreme liver reaction so I am not keen to take it if I can.

Every time I go and see the rheumatologist I feel pressure to take methotrexate, which feels far too strong a drug for my situation. I am not convinced they have the right diagnosis for me. I know the idea is that if you take methotrexate early then you have better outcomes overall. I just don’t feel like this is the right path for me.

I feel very confused and am due to see the rheumatologist again next week. Are any of you in similar situations? Am I being a wimp about methotrexate – and is it not that bad? Would I have a different experience if I found a decent private specialist?

16 Replies

Well if I felt ok, and my blood tests didn’t show high inflammation markers then I wouldn’t want MTX either! In your position I would be resolute and say I wanted to put it off a while longer. (I wouldn’t say no, just “postpone” it, as never good to piss off a rheumy). MTX has been fine for me, and my best friend, but I still wouldn’t take it if I didn’t think I had too.

Are you male? Then can always play the “I am thinking of fathering a child” card which means MTX is not on. At 45 that’s a bit less likely to be believed for a female.

My first rheumy told me that she has had a few patients where the disease burnt out in their 60’s. Sounds like perhaps your mum was one of them, so you might be too?

DrJJ profile image
DrJJ in reply to helixhelix

I am female, so the wanting a child card wouldn't work for me. But thanks for the tip. I agree, its always best to agree with the rheumatologist - but politely put it off until symptoms get worse. I am glad that MTX is working for you.

I hadn't heard about the disease burning out in your 60s. That is interesting. I will have to look into that.

helixhelix profile image
helixhelix in reply to DrJJ

I think it’s rare..,,

Well if you really don’t want to take Mtx speak to your rheumatologist & ask why he thinks now is the time for your to start. You say a “strong drug”...but initially you would probably only be prescribed a very low dose .

Without that answer may refuse it because you saw how it affected your Mum, then regret it down the line when your Rheumy says “If only you had taken Mtx when I suggested it”

Rheumatologists really don’t just have a tick box “ I know I’ll give

DrJJ Mtx now”...they observe your condition, test your joints & look at blood results...& use their professional knowledge to decide how to proceed.

If your rheumy can’t answer your questions satisfactorily say you think he may have incorrectly diagnosed you.....then maybe now is the time to get a second opinion?

But don’t expect him to be pleased that you doubt his clinical advice.

DrJJ profile image
DrJJ in reply to AgedCrone

I think you're right - they don't have a tick box list. I am struggling with that part. Knowing that it's just a judgement call rather than a certainty. I will definitely ask some more questions, and definitely don't want them to feel like I am doubting their professional judgement - I just want to be sure!

In my view I after many years of better understanding of my personal situation and of the background factors. My situation what more or less exactly like yours. At first my CCP was quite low and kept increasing with similar symptoms as yours. I had been in risk for RA for a long time and had I known that my body was telling me that there could have been something I could have Done help to find the fix my body and help the immune system.I think your mother did give the right help.

DrJJ profile image
DrJJ in reply to Agoodlife

How are things with you now? Did you take medication?

Agoodlife profile image
Agoodlife in reply to DrJJ

Feel much better. I still do not take RA meds.

I would get ultrasounds and check your inflammation that way. Definitely. In the US, we have the Vectra test which is the gold standard and measures multiple inflam markers tied to RA. My CRP and ESR are *always* low, even when I had such major damage happening that I required surgery. And I had very little pain. MTX has been a total miracle for me and I love it. And I’m someone who was anti-drug and tried every possible other method to reduce the inflam. In fact, my US rheumie calls me an ideal patient. I have the severe form of RA, but am an active, happy 45 year old - because I eat right, sleep, take the right supplements for me. Every body is different - when in doubt test, test, test. It’s worth not having your joints damaged! And in the UK, the NHS just doesn’t have the resources to properly monitor your disease so you have to do so yourself. In the US, I saw my rheumie every 2-3 months for an hour. All paid by insurance. Here - do an ultrasound just to confirm you are ok. THEN, if your disease isn’t active you can feel confident not going on MTX. And remember - your mom is one person, you’re another. With our current diets, toxic loads, etc diseases behave differently in our bodies. I spent 10 years at Stanford University fundraising for medical research and the studies are all showing significant increases in certain diseases with the recent generations, including autoimmune. (And some reasons why - toxins, epigenetics, etc.). So test yourself before making a decision - not just CRP or pain. That’s my long winded advice so you don’t end up when surgery like me! And so 10 years down the line you aren’t disabled or have permanent joint damage.

DrJJ profile image
DrJJ in reply to HanaleiBa

Thanks for the advice and glad to hear you are doing ok. I have had ultrasound and there is some signs of inflammation but the sonographer said that it was difficult to say what was causing the inflammation. I work at a computer so there was signs of repetitive strain but also some general inflammation. It is good to hear that methotrexate is working for you.

I’ve had RA since I was 38. I’m 67 now. I’m fortunate and have periods of remission, my last one was 13 years. No meds during that time. I’ve had 4 consultants, each wanted to put me on methotrexate and each time I said I didn’t want to go on it and they accepted my wishes. I had Hepatitis A when I was 19 and travelling in Israel so I was concerned about my liver ( I was also brought up not to take any med unless absolutely in a bad way). For many years I took Diclofenac, the lowest dose possible but sometimes the max. I’ve been on Sulphasalazine for the last year and am reducing now to 3 tablets and hopefully none soon because I feel so well ( I went 80% vegan in August as my rheumie was talking about biologics if I didn’t improve). Last week when I saw her she was amazed at the difference. I’m walking 4 miles a day now and last week I walked 6 miles.

We are all different but if your RA is mild and that’s your view re methotrexate I’m sure your rheumie will respect your wishes. All 4 of mine did. Good luck and I hope your situation turns out to be like your mum’s.

DrJJ profile image
DrJJ in reply to Kalimers65

It is good to hear that there are other options available. Is the diet a big factor for you? Remission for 13 years sounds amazing!

Kalimers65 profile image
Kalimers65 in reply to DrJJ

A plant based diet is supposed to be very good for RA. As I said I’m 80% vegan. If I stay with people I relax on the diet as I don’t think it’s fair to impose my needs. I also have reflexology once every 3 weeks too. It’s a mystery what works for some and not for others but I think it’s worth a try. Red and processed meat is thought to be bad for RA. Have you looked at the Paddison programme on line? I didn’t join but I took a lot of his advice to heart.

HanaleiBa profile image
HanaleiBa in reply to DrJJ

Check either AIP diet (autoimmune protocol or even paleo) or vegan. Paddison Plan is a good starter for vegan. Each body reacts differently. For some, vegan is the answer - for others the grains and legumes can flare you. You have to see what works for YOUR body. It’s work and effort - but when you see yourself helped by diet choices it’s amazing. For me I do 80% veggies and mostly soy, limited beans, limited nuts (when I have too many beans or nuts I feel it). Fish, eggs, and lean meats work for me, but I am a vegan at heart for ethics do I try to minimize those. But if you “ask my body,” I admit paleo works best for me. BUT, I know other people who put themselves in or close to remission with vegan. Don’t believe anyone who says their diet is best - try for yourself what your body responds to. One thing that everyone does well on though and every study supports: omega 3 fatty acids. High dose - 3000-5000mg per day. Nordic Natural’s is a great brand and has a high dose formula. Good luck!! Ps. Vit E makes the omegas even more effective. Also circumin helps a Lot of people.

Interesting new article about treatment of RA.

I think everyone with RA should read this recent survey above

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