Any suggestions on steroid sparers?

[missretired]

It's been just over a year of taking 25 mg of methotrexate and I have managed to get down to 8 mg from 20mg but I still have lots of pain and stiffness all over my body, very tired and for the past few months quite nauseous/pains in my stomach. I'm off to see the rheumy next week and think may be time to suggest another steroid sparer. Does anyone have any recommendations on medication that has worked for them?

[PMRpro Ambassador]

Several of us patients are of the conviction that steroid -sparers don't work in the way the rheumys think they do in PMR. Slowly, top experts in PMR are beginning to think the same and methotrexate is no longer being recommended for general use as a "steroid sparer". The evidence was very mixed anyway - 1 study said it helped, 1 study said it didn't and another didn't know.

There is increasing anecdotal evidence that reducing the pred dose VERY VERY slowly will achieve a similar result. By "very very slowly" we mean never more than 1mg at a time - and often spreading the reduction over weeks, not doing it overnight. I take about 6 weeks to reduce 1mg, starting with the new dose 1 day, old dose 6 days, new dose 1 day, old dose 5 days - continuing in a similar way reducing the number of days between new doses until arriving at alternate days old/new. Then I increase the number of days at the new dose: 1 day old dose, 2 days new dose, 1 day old dose, 3 days new dose and so on. Once you get to 1 day higher dose, 6 or 7 days lower dose you've got tot he stage every day at the lower dose will be fine.

I had struggled for nearly 4 years to get below 9mg without a flare until I tried this pattern of reduction. I am now at 5mg for the first time. I have had no problems at all and felt well the entire time. I am by no means the only person to have tried it successfully and a consultant is also using it - and is finding it works well.

[Celtic PMRGCAuk volunteer]

Hello missretired

Like PMRpro, I found that the only way to reduce from the lower steroid doses is very very slowly. I struggled to reduce from the low doses until I started reducing in half mg drops, tapering slowly over a period of 7 weeks, much the same as PMRpro is doing now. I eventually got off steroids after 5+ years following this routine. Steroid sparing drugs were never mentioned and I often wonder how many people could avoid those drugs if they just went more slowly with the steroid reductions.

If you still have "lots of pain and stiffness all over your body" then perhaps you should now question the use of continuing with Methotrexate, especially with the nausea and stomach pain you are experiencing. If you don't already have eat 'live' yoghurt before taking the steroids, you might find that will help.

Also, if you are taking a PPI for stomach protection, it would be wise to check whether that is causing the nausea and pain. Although they are routinely prescribed alongside steroids as stomach protection, they had the complete opposite effect on me resulting in bowel problems and pain. They were discontinued by the rheumy at my first appointment with him, and I put the 'live' yoghurt down to a smooth journey on steroids as far as my stomach was concerned.

[ritter]

Hi ritter here I am down to 11mg,s following the advice of PMRpro & Celtic I am ok at the moment and feel quite well considering how very very ill I was listening to my Doc or should I say QUACK,Ruemy not much better but definitely better than Doc,my Reumy suggested sparers but I said no thank you he said if you change you mind you know were I am,last June my doc forgot about me and I was on 30mg,s for months and very ill i mite add the pain was 24/7 like someone was ripping my organs out very frightening and it lasted for months,I have GCA but thank goodness for this forum as I feel so indebted to them they have kept me going I was so ill I contemplated going to Switzerland it was that bad.so sorry for going on a bit but do try and listen to the experts and I don't the medical profession, definitely consult with them and then tell them how it should be,good luck kind regards ritter,Anne

[jinasc]

Ritter

Methotextrate is brilliant for those people with both PMR and LORA (Late Onset Rheumatoid Arthritis) in fact Methotextrate is the gold standard treatment for RA.

As Celtic and PMRpro have said, Pred is it. It is just the medics are so desperate to get you off pred, that they will try anything.

Each additional medicine comes with side effects, so do the Math. You are adding side effects each time. Pred has enough side effects which are well documented and nobody I know has had them all or even one third of them. And 95% of them can be dealt with, if and when they occur. OK not the most common, weight gain, peach fuzz, moon face and about another 5, but they diminish as you come down slowly.

Take it slowly and if you want another pattern, send a PM.

[suzy1959]

I am currently testing out Leflunomide, having had no result from Methotrexate. Professor Dasgupta told me that he is getting good results with this drug with PMR sufferers, so I am willing to give it a try. It is too early to tell whether it is going to work- currently my ESR is 22 and CRP 22 which is quite high for me.

[gperkins]

My rheumy prescribed Plaquenil in order to help me with pred reduction. He also has my daughter taking it instead of prednisone. She has Shogrens disease. Its also called hydroxychloroquine 200 mg twice a day. I have not noticed any improvement but doc keeps telling me to stay on it. For what its worth

[Griggser]

Methotrexate didn't work for me and I'm now on 10mg of leflunomide after reducing from 20mg which gave me horrendous stomach pains. I don't think the leflunomide is helping either. But heyho we are all different so I hope it works for you.