Having joined the PMR party, with an unexpected invite in January 2017, I was eventually diagnosed in March. My CRP was 176. I was prescribed Pred, which was quite new to me. I started at 30mg and I'm now down to 7mg and tapering 1mg per month from now on.
I eventually got to see a Rheumy consultant at my local hospital in December '17, (he left in January '18). I then saw the registrar , who sent me for several scans, ultra sound, MRI Contrast, Dexa. and several blood tests.
The only concern I had was that my 2nd and 3rd fingers on both hands were slightly stiff in the mornings but it gradually wore off by mid morning.
I saw the Registrar again, last week. He told me that the MRI contrast scan had shown up inflammation in my wrists and fingers on both hands, more so on my right hand.
He said I needed to change my medication, start tapering the Pred and start taking Sulphasaline, 500mgs (increasing the dosage over the next 4 weeks).
I started taking the Sulpha last Saturday morning, and since then I've had a constant headache and my hands have stiffened up, they are painful and very weak, my toes have started stiffening as well.
Has anyone else had the pleasure of this behaviour? Re-diagnosed ? Using this Sulpha drug? And the side effects?
I've tried contacting the Rheumy Nurses at the local hospital ( as advised by the Registrar) but they seem to be permanently closed!!
Sorry its such a pathetic tale.
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Graememidsussex
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Nobody’s tale is a pathetic one we have all different problems which effect us different ways I still haven’t or don’t understand this pmr thing and still not sure if that is one of my problems not to worry they know better then me and I will go along with them but don’t you worry about thinking about your tale just take care of yourself
Rusty8, Many thanks for your reply, I've been on the end of some ropey diagnoses and treatment in the past ( in my opinion anyway ). So it worries me when there is a re-diagnosis and a change in treatment, especially when I thought the Pred was doing the job. I'll persevere although I had a call from a Rheumy Nurse today, who told me to stop taking the Sulpha*** for a week, then start again and if the headaches stop then return its down to the Sulpha***, so they'll change it !
I have GCA/PMR diagnosed june 2015, recently diagnosed with additional inflammatory arthritis and Fibro.
I have tried Methotrexate, leflunomide and azathioprine - all stopped beacuse of side effects.(Nausea, diarrhoea and feeling awful) I was then put on on sulfa and dose was 1 tab daily week 1, 2 daily week 2, 3 daily week 3 and up to 4 tabs daily, however I too had a headache and by the end of week three it was a migraine so I stopped.
That was about 6 weeks ago. I have agreed to try again, currently on 2 tablets daily and all ok, apparently 2 is useful so even if I just keep to this dose it may help my joints. I will try and increase but stay on 2 for a while. I want to regain a bit of my pre- diagnosis active life, so if this helps I will try again. If not, apparently there are other meds they can try, my Rheumy is very understanding and says they are here to help us feel better not make us worse.
You could try dropping to one tablet and seeing if it settles, but when all said and done you must do what feels right to you.
Lesley2015, thanks for your reply. I could see myself doing what you've been through, although today I had a call from a Rheumy Nurse, who told me to stop the Sulpha for a week, see if my headaches go away, then start the Sulpha again and if the headaches return then it'll be the Sulpha and they'll change it. I'm only on 1 tablet at present, but I'll stop and do what I'm told for now, then makes my mind up what's causing the problem. I've reduced my Pred as well, although I was tapering from 8mgs to 7mgs. I'd done a week on 7.5gm before reducing. So I was being careful, or so I thought !
I had a rheumy who wanted to put me on sulphasalazine - mercifully I moved to Italy and got to stay on pred!
Whatever his diagnosis it is not the disorder that will govern being able to reduce your pred dose at 1mg per month - it will be your adrenal function.
But it isn't the only medication for inflammatory arthritis and I would be protesting how ill I felt.
PMRpro, thanks for your reply. I enjoy reading your comments on this site, they makes so much sense. The Rheumy Nurse told me today to stop the Sulpha*** for a week, then start again and see if the headaches stop and start again in sequence. Although I thought I was doing okay with the Pred, I had very little pain or stiffness in my hands. Over the last 4 days my hands and wrists have stiffened up, as well as my toes now! I seem to have gone backwards drastically within this short period. I'll do what the nurse has suggested and take it from there.
Oh dear Graememidsussex! What a blow! You were doing so well with a satisfactory taper and very few symptoms lingering. Now this. Did the Registrar explain his rationale for this treatment at all? He sounds a bit over keen. The patient was doing well! Surely that is the main thing? Not the genius of his new diagnosis.
I have read that this new drug you are on takes 6 weeks to show any improvement. The side effects don’t seem to include this stiffening up that you describe. I think you need an urgent appointment with the Rheumatologist. Anything I say further would be guesswork and I think you’ve had quite enough of that.
There is nothing pathetic in your story except the registrar’s failure to actually “ see” the individual in front of him, who was doing well.
Hi Sheffieldjane, thanks for your reply. I think you are right regarding the mind set of the registrar, there seemed to be a rush to get me on a new drug.
I've had one day off the Sulpha*** so far and my hands are doing well, little stiffness or aching. Hopefully it'll continue tomorrow. Fingers crossed (as I can do now !!)
Hi Graememidsussex. You sound very similar to me. I was diagnosed in May 2017 with PMR but for many years previously had experienced stiffness and a strange aching in my wrists (like an electric current). I started on 20 mg pred and it was like a miracle for the first 18 months I felt hardly any pain or stiffness. Then the stiffness started with a vengeance and I could hardly walk. I described myself as a "half dead, manky penguin".
I reluctantly went to see a rheumatologist (I have a very good GP). He sent me for a barrage of tests which showed that I have good joints for a woman of 70 - cheers!
He said that PMR always presents over the top of an inflammatory condition, in my case arthritis. He suggested a slow release anti-inflammatory such as Meloxicam or Mobic (I expect there are other brands/names?) .
I also asked for something to help me sleep and he prescribed Amitriptyline which he said would also help with the pain. Bingo! I am now on 9 mgs pred plus one each of the above drugs per day. I am tapering using the DSNS method and am a different woman - the penguin has gone!
I do an aqua workout in a pool 2 to 3 times a week and that really helps plus I have a sauna too. I try to follow an anti-inflammatory diet too.
I’ve just opened this email , yes my post was 2 years ago !
Over the last year I have followed the DSNS tapering ( thanks to PMR pro) and to the surprise of a young registrar , who had never heard of it before ! I’m now down to 1mg of Pred and soon I’ll be tapering off the Omeprazol , I hope .
The rest of my ailments are ticking along nicely , all my old rugby injuries are come back to bite me in the a**e !
Louisa, I hope you get off the Pred ASAP on the DSNS !
PMR pro , thanks for all your help over the past 3 years , invaluable !
I read all the bulletins but have very little to say , so thanks for all your advice .
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