resistant to Prednisone

[JessJess21]

hello all,

I saw rhematologist on friday after a hellish pain filled week. He thought that he better try giving me an injection of Pred to see if was an absorbtion issue. He also doesnt think much can be done for my knee ( osteoarthritis ) unless i loose a lot of weight. He also says - tho not caused by my weight - my fat is not helping recovery. But if the pred injection doesnt work - he will try methotrexate on me. I feel a tiny bit better- and hoping i can take co codemol for pain. Im going to re start my daily physio to strengthen muscles in knees ( i gave up for 2 weeks as was painy too much). Fingers crossed the shot works.

What do others think about methatrexate?

[HeronNS]

Just looked back at earlier posts. I note you were reducing by 5 mg a week! No wonder you were/are in pain.

If pred worked for you at the beginning, then the correct procedure should have been to start a slow taper after several weeks or maybe a couple of months, no more, at your starting dose. A rule of thumb is to taper by no more thn 10% of the dose and a rate of about a month to achieve each step. There are slow taper plans to help us manage to go down slowly and avoid pred withdrawal pain.

If indeed you don't have classic PMR but something like RA, then methotrexate is a reasonable option, although you will still have to taper carefully off pred because of the effect on adrenals. But it sounds like your doctor is just making guesses which isn't going to do you any good. You need proper management of the pain which can actually be more safely gained through correct dosage of pred and careful taper than massive amounts of painkillers. It sounds like you could use some support to develop a good weight loss plan. But the most important thing is quality of life. 🍀

[Potemkin in reply to HeronNS]

Hi - I can't comment on the medication but if you would like to get help losing weight then the Second Nature programme is very good. You are supported by a nutritionist 1-1 and in groups. They look holistically at diet, stress, sleep, exercise and mind (why we est, triggers). It's not a quick fix but a change of life. I've lost 3,5 stone and kept it off for 2 years.

It's about real food and not shakes and bars which does support our condition

Some parts of the country do a NHS referral through your Dr - mine doesn't.

I hope you find your answers.

[Potemkin in reply to Potemkin]

Sorry should have said - all online.

[PMRpro Ambassador in reply to Potemkin]

You also replied to HeronNS - I assume it was actually meant for JessJess21? It doesn't matter so much as she will be notified anyway as author of the thread but may be confused.

[suzy1959]

I second what HeronNS has said. Proper management of your pain with Pred. being used properly, could well solve a lot of your pain.

There is scant evidence that losing weight has any influence on OA pain. It certainly didn’t for me. I lost 4 stone and it made no difference. I am so sick of doctors who peddle out this useless advice . I think it is because it is easier than doing something more proactive . If you need a knee replacement then that is what you should have. I found co codamol didn’t do anything for my pain. In fact nothing did! I had 2 knee replacements and 2 hip replacements within 2 years because that is what I actually needed. I also couldn’t do any of the exercises due to the pain.

Please don’t feel bad about this. You haven’t done anything wrong. It is your doctor not being very helpful.

[PMRpro Ambassador]

If I were you I would be looking to see a different rheumy. As I mentioned before, just because the symptoms are PMR-like doesn't mean it is PMR and axial spondyloarthropathy would also fit your symptoms.

The use of pred in ?PMR is to try to sift that out - when 30mg of pred doesn't work, then it is extremely unlikely to be PMR. When 30mg of pred works but very slowly, the chances are it may be something else. So you don't reduce at 5mg a week and wonder why the patient isn't improving - you do more investigations. He's seen you at lower doses and knows what your symptoms are. The markers were falling but still high - he needed to leave you on 30mg pred until they were down to normal range and stable. You would do that in inflammatory arthritis as well, use pred for symptom relief while the other medication was starting to work which can take months, rather than leaving the patient in pain and unable to function.

30mg WAS doing something - it may be you have LVV which would need more - and if he thinks that is a toxic dose I hope he doesn't do this to his GCA patients who may need double that and more!

To be honest - since you are south Asian ethnicity, PMR is a less likely diagnosis. it is very rare in blacks and Asians though it can happen (sorry if my terminology is wrong, I can't keep up with nor fully understand the changes). But for you, PMR is the zebra when horses hooves are heard - possible but less likely.

If it is an inflammatory arthritis, methotrexate would be the place most rheumies would start. It works for a lot, it can have unpleasant side effects but they are easier to accept if it works. But there are alternatives.

[JessJess21]

thank you so much - thats so helpful. I will get a second opinion. The injection has worked a little bit. Noticing the pain is much reduced tho still there and hands have got much better. Just taking much fewer pain killers now. But your advice and response so helpful. Dont worry about “terminology” - changes all the time - your intention is main thing and that is so kind and good. When i git initial diagnosis of PMR i was surprised re my asisn heritage- and was almost quite excited as i do love vikings and thought finally i might be one - but you are right - its looking unlikely. I will get a second opinion too. X

[PMRpro Ambassador in reply to JessJess21]

It may still be - and your rheumy is not fully understanding the role of pred in PMR. Too many think it is a benign illness and a little bit of pred is all that is needed - but it is becoming very clear that there is a broad spectrum of PMR, LVV and GCA and you can be anywhere on it but only appear to have PMR on the surface. Some people need more pred - and it is less an absorption problem than receptors or the speed with which they metabolise it. There are several different presentations which also respond to DMARDs together with pred but each is a fairly small proportion.

I think you said you work in the NHS - what do you do?

[JessJess21 in reply to PMRpro]

Hello i work in public health- very helpful advice x

[Preposterous in reply to JessJess21]

Have you tried Pilates for your knee? I rather suddenly developed pain in my right knee 2 years ago that on X-ray was found to be osteoarthritic. It not only made walking painful but I couldn’t drive after a while. What improved it quite quickly was down to a Pilates teacher who looked at how I walk/move and found it was my right leg that was doing most of the work so she worked on exercises to resolve that, addressing my centre of balance as well as working on the knee itself. I was amazed that this helped and just wondered if it’s is something you might try?

I continue to go to Pilates and now - having recently discovered I have osteoporosis following a DXA scan - she is addressing this issue with appropriate exercises as well as taking account of the PMR diagnosed in March this year.

Very best of luck, I hope things improve for you.

[PMRpro Ambassador in reply to Preposterous]

I used to have a Pilates teacher like that - do miss her classes even after 15 years!!!!

[DorsetLady PMRGCAuk volunteer in reply to Preposterous]

Agree about Pilates - helped my Pred affected muscles when I first joined -and has got me through replacement surgeries since.

Might be worth looking at this video on PMR and osteoporosis

m.youtube.com/watch?si=Ir4W...

[BladesLover]

Hi there. My experience of methotrexate was quite limited. I was on it for 11 weeks. I started to feel fatigued again when I started it but this could have been partly due to the reduction of prednisolone(?) After 7 weeks of the methotrexate, I went to a routine appointment at Rheumatology clinic which showed my CRP marker was raised again - so the Consultant wanted me to come off the methotrexate and start Tocilizumab injections. This happened 4 weeks later. I hope you have a better experience with methotrexate. Very best wishes.