Tapering Severe Return of Symptoms

[mcrossbonfire]

I began 20 mgs of Pred approx. 3 months ago after an unsuccessful attempt to reduce from my initial starting dose of 15. 20 kept symptoms under control and I felt reasonably well, but experienced side effects. I then began to reduce very slowly using a similar approach TO Dorset Lady's tapering method. With each reduction of 1mg taking to approx. 5 weeks to implement new dose, I felt I was doing ok despite some discomfort. However, I am now in my second week of implementing a gradual new dose of 17mgs, but I have seen a rapid return of PMR symptoms and slowly getting worse, during the last 3 days. So far this week I have had two days at 18 and two days at 17. I am really struggling to walk and to use my arms. I am not sleeping because of the pain when lying down - or sitting for that matter!

I wanted to reduce because I have real problems with swollen ankles and legs and have cellulitis because of it. I developed ulcers on my legs (now healed) due to knocking my legs accidentally and the skin is so thin and swollen. I have been attending a would clinic and been in compression for a couple of months, but since that stopped I'm back to square one.

Nevertheless, I cannot cope with the pain I am currently experiencing and that is my priority! My questions are:-

Do I continue to slowly reduce?

Do I stay exactly where I am - i.e. 17/18 mgs Pred?

Do I increase, and if so, by how much?

I'd be grateful for any guidance and Many thanks.

[PMRpro Ambassador]

If you are having such difficulty with reducing at this level with a diagnosis of PMR an alternative diagnosis is a possibility and should be checked. PMR is not the disease, it is the name given to a set of symptoms which can have various underlying causes. It is possible it is PMR - but equally possible it is something else.

Are you under a rheumatologist? Who made the diagnosis and put you on pred?

[mcrossbonfire in reply to PMRpro]

I do not have a rheumatologist. My GP made the diagnosis and prescribed Pred after months and months of symptoms and despite my knowing exactly when was the onset of the condition. In fact I can pinpoint the day, time and place! I also suffer with Osteo- Arthritis and really struggle with that. Thankfully, I am due to see a specialist next week. I also have other conditions that I deal with, but don't believe them to be related to PMR necessarily. Although I would say that the general feeling of malaise they engender, together with extreme personal stress and loss over the past 4 years has helped to develop PMR!

I have felt fairly confident that that PMR is the issue, but who knows? I suppose I have felt that I must still be in the throes of it all, but didn't realise as the symptoms were fairly well under control, and this last reduction is just a step too far at the moment.

[PMRpro Ambassador in reply to mcrossbonfire]

Rheumatologists I know say as many as 40% of PMR diagnoses made by a GP are incorrect. PMR isn't a one-off illness, it is a chronic one that needs pred MANAGEMENT, it isn't a cure, for a median period of 5.9 years. 40% of patients are still on pred, albeit at a much lower dose, after 10 years. Inability to reduce from the starting dose as you describe is a prime indicator it may not be PMR.

Do keep in touch though and tell us what the specialist thinks.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says it may not be PMR as we know it - you should be able to decrease at the rate you have been doing more successfully than you are.

20mg will mask the pains of OA- plus you should be able to differentiate between the pains of that and PMR.

Good that you are seeing a Rheumy shortly - hope he will then confirm if PMR or something else .

[katiemills]

I’m sorry you’re suffering so much but glad you are being referred to a rheumy . I had a GP diagnosis in October 2018 and started on 15 mg pred . A week later it was up to 25 mg and a week later I was on 30 mg . Only then was I pain free . I was referred to a rheumy who ran all sorts of tests to look for other things but concluded that it was , in fact PMR .

If I was you I’d stay at a high dose until you see the specialist next week .

[Pipistrelle]

I'd agree strongly with the above, and the suggestion to get an immediate referral to a rheumatologist. I would question whether this is PMR.

[Telian]

I understand your reluctance to increase pred when you are so uncomfortable.

I’d be inclined to up my dose to 20mg just to see if there’s improvement with your pain. Pain killers aren’t effective if it is an

AI. If there’s no improvement then further investigations are needed. Definitely don’t reduce until you’ve had your Rheumie appt.

Hope you get a correct diagnosis and appropriate treatment very soon.

Take care.

[mcrossbonfire]

The pain I have experienced is just the same as the pain when diagnosed and again when on a low dose of pred. Upper arms, hips, thighs and buttocks . Absolutely excruciating! It affected my walking, my raising my arms, my sleep, lying down, or sitting! Well I have increased my dose back up to 20 mgs and I am beginning to feel an improvement. So I'll stay with that til next week. Thank you all for your responses.

Kind regards