Reducing quickly without flairup

[Woody1951]

I was diagnosed 5years ago with Pmr went on 30 mg of pred

Had great results but terrible side effects went off very quickly at 5 mg every 2 weeks and was able to stay off till last month had a attack and knew right away that it was Pmr put myself on 10 they up to 15 mg which seemed to work has anyone ever reduced quicker than recommended with out sever flair up

Thanks woody

[piglette]

What sort of side effects did you have? Have you got them this time? Often there are ways of helping reduce them. I have always just decided on my own reduction.

[Woody1951 in reply to piglette]

Severe depression mood swings anger all the time worsts side effects I could have I spoke with my dr and he said unfortunately Thad all the worst

So I met with a different dr for a unrelated matter he asked me what med I was on told him only prednisone he said you need to get off that as quickly as possible and that my dr was old school so reduced quickly and experienced so pain put was off in months and felt great for 5 years

[piglette in reply to Woody1951]

I despair of some doctors.

[Karendeena in reply to Woody1951]

Woody1951, I had (have exactly the same effects - awful). My GP reduced my pred down by 1mg every 2 weeks and b the time I stopped them in December I felt awful, lost weight, no appetite etc. I really thought I had something seriously wrong with me Had all sorts of tests and scans....nothing, so developed health anxiety and now having CBT Pain came back so paid to see a rheumatologist who said my GP had tapered me far too quickly and put me back on 5mg with instructions to taper 1mg every 6 weeks and see him again in 3 months time. It's taken 4 weeks for the pain to subside but seems to be working. Problem is I m back with the anger etc

[PMRpro Ambassador]

It all depends on the activity of the underlying cause of the PMR symptoms. PMR isn't an acute illness - it is chrnic and as long as it is active you will require pred to control the inflammation it created which is what causes the symptoms. If you reduce to lower than the amount you need for that, the inflammation will build up and you will have a flare.

If the diagnosis of PMR is correct, the second doctor is obviously not familiar with it - your doctor was not "old school", corticosteroids are the mainstay of management of the symptoms, there is no real alternative unless in the USA where they are sometimes able to fund Actemra. The first doctor was quite correct in using pred and the second doctor didn't appear to really take the diagnosis seriously.

You don't say how long you were on pred 5 years ago - if you got off pred and were pain-free for years, it is possible it might something else like an inflammatory arthritis, some of which can come and go and they would also respond initially to pred. But you need a proper diagnosis and you really shouldn't be treating yourself - where did you get the pred from? If it is left over from 5 years ago it will be way out of date and taking out of date pred is not a very good idea!

[Woody1951]

Thank you very much for your help and comments the diagnosis of Pmr was correct and it has come back five years later my GP diagnosed me correctly but sent me to a rheumatologist because I was not getting better he raise the dose to almost 40 mg which caused me many many problems I have since got a new GP who is from England he is truly a great doctorAnd I couldn’t be happier with him he also suggested that in North America rheumatologist and doctors believe that once you were on prednisone you probably will be on them for many many years my new GP says this is not the case where he has been practising for many years he will monitor me as he slowly takes me down with the objective to getting me right off so this is the route I am taking right now thank you all for your comments it is very much appreciated

[Woody1951]

Thank you for your reply it is very interesting to me to hear how you had to go up and down so many times but were able to reduce rather quickly this is very helpful to me thank you very much hope you are doing well cheers Woody

[HeronNS in reply to Woody1951]

Of course pred is used differently for PMR and GCA than in other conditions, and usually the treatment for other conditions doesn't last as long and the taper can be faster. With PMR we have to spend time finding the lowest dose which keeps the symptoms in check and wait for PMR to go into remission. No cure. My daughter-in-law's father was in hospital for another problem which required high dose of pred. The attending physician had him taper off completely, overlooking the fact that he'd entered hospital taking 8 mg for PMR! Yes, he did get that dose reinstated promptly.