Palindromic Rheumatism query

Harping

Hello , I’m new to the forum and don’t know why I didn’t visit before as it seems a very sensible place to obtain advice .

To cut a long story short I have been backwards and forwards to rheumatology for the last 4 years or so. I started with roving joint pain and blood tests showed high anti ccp and negative RF. whenever I saw the consultant after a flare the issue had settled and the ultra sounds were unremarkable. In 2019 I was was seen by a research fellow who diagnosed RA after Doppler positive findings in a painful shoulder and wrist. I started on MTX and hydroxchloroquine. When I saw the consultant a few months later I was well and queried whether I should stay on the drugs , she said she had doubted the diagnosis and invited me to come off the meds which I did. I have continued to have flare ups but been well in between for the last year, she said she thought it was palindromic rheumatism which may or may not evolve to RA. I have found it very stressful because I am asked to be vigilant and photograph my joints whilst at the same time get on with my life and forget about something that may never happen.

In September I started with very significant joint flares every couple of days and some very painful. I haven’t seen the consultant although I emailed her . I saw the nursing team who were great but told me I needed to be on MTX and that whether it was palindromic or not it would get worse and medication was indicated. They started me on 15mg of MTX. My ESR was 31 , they redid the RF at my request which was now positive with a reading of 36 , so still low.

I emailed the consultant to ask for clarification whether she felt the medication was warranted and said I would not want to cause systemic damage or joint damage and if I have shifted to RA then I would take the meds but if controlling the flare up was all I was trying to do without risking any other long term effects I would probably think twice about taking the meds. I asked if it was possible to X-ray my hands and wrists to see if there was any damage which might support taking the medication. She basically said it was up to me what I did , that even if the joints were swollen continuously I wouldn’t damage the joints for several months so I could wait if I wanted to. She said there was no way of knowing if it had flipped to RA . I asked her to tell me if she thought I should take the drugs and she wouldn’t commit, just said it was up to me but if I did take the drugs I should go on 25mg of MTX for up to 6 months not 15 as prescribed.

I feel very confused, I am getting conflicting advice and have a nurse appointment tomorrow but am not being offered an appointment to see the consultant. I get the feeling the consultant finds dealing with my need for certainty very tiresome and I feel like I now have to make these very significant decisions entirely alone.

so I turn to you for some direction. I don’t think asking for a second clinical opinion is going to get me anywhere as the face of medicine seems to have changed so much with Covid. I guess I wouldn’t have queried with the consultant the medication if I was sure in myself it was what I needed. Trouble is that when I’m not having a flare although my hands and wrists are a bit stiff and sore I feel ok. When the joints are painful, then it is a struggle and I accept there is something quite wrong but knowing the flare will pass within a day or so enables me to deal with it and although the joints are tender after a flare it is remarkable how they can go from being excruciatingly painful to clear of pain in a matter of hours.

I’m guessing what I have described is classic palindromic rheumatism, can anyone say what I should do about the meds and could these symptoms also be RA meaning I am doing myself no favours by not taking meds.

I am also concerned that every time I don’t take the advice they give or the medication it will make it harder to access treatment later on .

Thank you

jeddison1985

Hi @Harping firstly let me welcome you to the forum I hope you find the information and support you are after from our wonderful community.

I can see from your post that you have had a difficult time with a lot of conflicting messages and advice around treatment, diagnosis, medication and how to get on top of your symptoms. I am really sorry to hear that you have such an experience.

It seems like your main queries are related to palindromic rheumatism and the related medication.

The site is full of information and I wanted to signpost you to some information in relation to Palindromic Rheumatism and also around Methotrexate which you indicated is what you have been given.

https://www.versusarthritis.org/about-arthritis/conditions/palindromic-rheumatism/

https://www.versusarthritis.org/news/2019/september/all-about-palindromic-rheumatism/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Also just to note from personal experience and I know this may not be much of a comfort but often we have to go through failing on a medication before you can go onto a new medication or next phase.

Please feel free to search the forum for others with similar experiences and I am sure that some of our community will be able to help offer some useful suggestions.

Take care and I hope you get some relief and answers soon.

Thanks

Joe

Harping

Thank you Joe. I had read the info about Palindromic rheumatism and feel like I know quite a bit about it. My main query I guess is how to know whether it is now RA and how to deal with conflicting prescribing by the health care system. I guess also whilst I’m all in favour of patient lead treatment this feels very random!

helpline_team

Hi Harping,

Thank you for posting on the Helpline forum. I am sorry to hear that you have been struggling with flare-ups of your condition and that you have received conflicting opinions about your diagnosis and what medication is right for you. It sounds as if you have been on a difficult journey with all of this and you need more clarification about your condition and the best treatment for you going forward. Being told that your palindromic rheumatism may or may not evolve into RA has added to the confusion and your anxiety, and you are wondering how you can know whether you now have RA or not.

Joe has given a helpful response to your post with links to more information. Talking things through further with your rheumatology nurse tomorrow may also help and clarify things for you. Although you are thinking that a second opinion won’t help, asking your GP for a second opinion from a different rheumatologist on the NHS may be worth considering. A private consultation with a different rheumatologist would be another option. We are not medically trained.

If at any point you would like to talk things through informally and in confidence about your arthritis, you are welcome to call our Free Helpline on 0800 520 0520 weekdays 9am – 6pm. Posting on our Living with arthritis forum may generate more responses and would be a way of keeping in touch with others facing similar challenges.

I hope the information given below will be of some help. 

https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

Best wishes,

Fiona, Helpline Advisor