On Monday I had my first appointment with a rheumatologist. I was counting down the days and hours the previous week as I have been in absolute agony with all the pains in my body. My hands and fingers have been so bad over the last few weeks I have been out of my mind with pain.

I first became ill in January this year and was finally diagnosed in March with Polymylagia & started on prednisone which I only tolerated for 4 months before I came off on a fast taper under doctor instructions. I could not cope with the side effects on a daily basis whilst also working.

For the last 3 months I have taken nothing & tried to cope as best as I could. Some days were so bad I didn't want to carry on. I could barely move let alone function. The fatigue has been overwhelming and the stiffness causing so many problems.

At the appointment with the rheumatologist he only looked at my hands and knees, referred to 1 month old blood tests & pronounced that I didn't have Polymylagia but seronegative rheumatoid arthritis.

I didn't know what to say as the Polymylagia was diagnosed by a consultant at the musculoskeletal clinic and the head partner at my local GP surgery said I was a classic case.

The consultant gave me a depo medrol injection 120mg to help with the pain (4 days later & no benefit yet).

He then told me I would be on methotrexate for life. This was a drug I had already read about and did not want to take as I had read about all the side effects, diarrhoea, mouth ulcers and hair loss.

When I said as much he said I wouldn't get those as he would prescribe something to counteract that?

Well I am still suffering some of the side effects of the prednisone. I have chronic tinnitus & my hair is still shedding 4 months later. I can't afford to lose any more.

I don't know what to do. I haven't got the prescription yet as my latest blood tests aren't back & I'm waiting to see the GP who will be dealing with the meds going forward and ongoing blood tests.

Any advice would be gratefully received. Thank you.

5 Replies

  • I am so sorry you are having such a rough time. How on earth do you manage without proper pain relief? I would have been on a plane to Dignitas by now. When you were taking pred did it sort out the pain? What were your symptoms? Also did you have raised blood inflammation markers such as CRP and ESR? What sort of prednisone did you take? What dose? What were the side effects?

    Interestingly enough I was reading an article recently about seronegative rheumatoid arthritis, which the article claims does not exist! Basically seronegative means the test came back negative, which is true for about thirty per cent of people who have RA. Of course that does not necessarily mean you do not have rheumatoid arthritis.

  • Just like seropositive doesn't necessarily mean you have RA...

  • If the Depomedrol injection isn't helping the pain at all after 4 days the rheumy is almost certainly right - it isn't PMR, you should have noticed some difference by now. If that is so, don't be too hard on the other doctors as the early stages of LORA (late onset RA) and PMR are very similar and about 1 in 6 patients who are told at first they have PMR later have their diagnosis revised, most often to LORA.

    The major side effects of methotrexate happen at the doses used for chemotherapy which are - needless to say really - are far higher than the doses used in arthritis. You will be given folic acid which should avoid most of the side effects developing and if you do get mouth ulcers, ask for more folic acid.

    By no means everyone develops side effects, that actually applies for pred too, but obviously you felt those you had were worse than the pain you were suffering. Although I had some fairly horrid effects when on oral Medrol (massive weight gain, hair and skin went mad and a wonderful black beard plus it didn't work as well as the prednisolone I had previously ) I never felt that they were worse than PMR pain. In the case of PMR there is no option - pred is the only medication that successfully manages the inflammation to reduce the pain and stiffness. Even if the rheumy had agreed you have PMR he could only have offered you pred - possibly in combination with methotrexate to try to reduce the dose of pred you need. What would you have said then?

    Really, you have to decide - do you want to remain in pain as you are or try something that will probably improve matters if it is RA (or any other arthritis really) you have, albeit it can take up to 6 months to get the full effect? You are presumably in the NHS system - so even if each RA drug doesn't work initially you will have to work through the list as you "fail" each drug. They will fund the least expensive one that works - and reasonably enough they keep the more expensive ones for the case that the one you start with stops working at any point - something that does happen after a few years for some people.

    The bottom lines remains: whichever you have, PMR or RA, you are considering rejecting the options the doctors are offering you. In the case of PMR, there is no other option, in the case of RA, this is where they start. There are no alternatives. I know I sound harsh - but that is a realistic summing up. We have all been there - no-one LIKES taking pred but for PMR it does offer us a decent quality of life despite the downsides.

  • Couldn't agree more PMRpro.

    Just wanted to add that I took Methotrexate for 6 months with no side effects at all.

    If it is RA and it's not treated effectively and quickly then it starts to erode your joints making it very difficult to get function back. Hand and finger pain is a classic presentation. You can get sero negative presentations of any auto immune inflamatory disease including Luous and ANCA associated Vasculitis!

  • My mother has been on methotrexate for many years for her RA. At 85 she has a thick head of hair and never had a mouth ulcer.... not all side effects will necessarily happen

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