How long on 20 mg Pred?

Thanks for your reply. I've been on Pred since July 2015  started  at 15mg which worked miraculously to me but then the dr reduced me too quickly ( I didn't know any better at the time) I think i was at 10 mg and had all the symptoms back and getting progressively worse. She put me back to 15mg but it didn't do the same thing this time and I had to go to the 20 mg dose to achieve the affect 15 mg did before. Ugh! So I've been at 20 ever since and never able to get below 17 mg. I'm currently back st 20 once again. Oh how I wished I could be at the 10 mg mark and feel decent, I envy you that! 

I feel very lucky to have been pain free at 10 mg for so long.  I now relapse when I hit 6.5 mg,  but manage at 7 to 7.5 mg with only morning hip stiffness and pain.  

There is another drug, tocilizumab (also called Actemra) which had successful trials in PMR and I think is cleared for that use in some places. It is usually given when steroids don't work- in your case the steroid works, but only at such a high dose that you'd worry about long-term use.  

Eileen knows more about this and may help out.  It is something to discuss with your doctor.  Googling "tocilizumab" and "PMR" brings up some articles that may help you and your doctor (who may not be aware of it, since this is relatively recent.)  

No - not trials. A few people with PMR have been given it in what are called "pilot studies" or in individual cases - usually done by the rheumy "rediagnosing" the patient as having rheumatoid arthritis, giving them methotrexate or another DMARD for a few months (knowing it won't work) and then giving tocilizumab instead in order to get it covered by insurance. I suspect there are a few anecdotal reports where the drug company has provided some of the drug to get some indication it will work in PMR - otherwise there would never be a clinical trial. Using it for PMR is off-label which has all sorts of connotations regarding reimbursement and insurance/liability if anything goes wrong.

It has been used in a Phase 3 clinical trial for GCA and is in the process of gaining approval, the FDA have already granted it breakthrough drug status - not that that always means much. It is being used in individual cases for GCA but it isn't going to be available in most healthcare systems for PMR before all the DMARDs have been tried and failed. 

For PMR it is unlikely to be easily available since it costs about $17K per year. They have no idea even for GCA how long it will induce remission for - is it going to have to be used continuously as it is usually in RA or will it induce remission for a few years or even permanently.And it has some fairly hefty side effects for some people.

Sorry, Eileen, we must have posted at the same time. I was planning on giving you an update on my tapering situation when I saw Marla's post.

You were right again😃

It was like a miracle when they put me on the 15 mg in July 2015. I felt great. But then about 3 months later the Dr advised I reduce and since I didn't know what I know now I jumped right in!  By the time I reached 10 mg I was almost back to where I started pain wise. Then it took 20 mg to achieve what 15 did before. At 20 mg I still have plenty of achiness but just live with it. Like I said I've reduced to 17 but then still had to go back to 20 and I don't reduce quickly. I give my body time to adjust and get past any Pred withdrawal symptoms. I didn't realize there were people that don't absorb all the Pred. I don't feel good most of the time but I've never gone above 20 mg. That's why I am trying the MX hoping it might help me reduce the steroids. I just wanted to see if anyone else has had this experience. Most I read have success at reducing at least till they get to the 10 mg dose or below. I've asked my Dr if I could have something in addition to the PMR but she's checked me out pretty thoroughly and doesn't seem to think so. I sometimes suspect Fibromyalgia. I don't really know why though. Last time she checked the trigger points I had no flinch pain. You said maybe I try to do too much and that could certainly be a possibility. It's a frustrating guessing game. Y

You have experienced exactly what I have in these past 5 years.....wonderful at first on 15mg......downhill and many flares since....

​I asked for second opnion last year (another rheumie) because the steroids were giving me so many side affects....he wasn`t sure I`ve ever had PMR, or what could be wrong with me at this point....so, and this dosen`t make any sense to me,  he said lets start at the beginning again on 15mg and reduce quickly in 3 months to see how you react.....why??  I am down to 11mg,  in pain and very stiff....I see him in first week of May, and don`t expect answers.....I do think  there are some of us, they don`t know what`s really wrong, or what to do with us.....I have said in the past, it`s a minefield for some of us......I hope you find answers and have better luck than me

But what do you call "not quickly"? 

Allowing a flare to happen by reducing quickly and then it being more difficult to get under control is not unusual. In fact, the Dead Slow approach was born out of a situation where a lady had flared after her GP told her to reduce too fast. Second time round she was struggling to reduce even at above 20mg at the rate he said, 2.5mg at a time. So we suggested trying 1mg at a time. It worked. Later the Dead Slow programme allowed her to get below 10mg without problems. Some people are just very sensitive to changes in dose - and the resulting steroid withdrawal symptoms are so similar to PMR they (and their doctors) panic and tell them to go back. Once you start to yoyo the dose, you are heading for trouble. If you go slowly enough - it doesn't happen until you get to a dose you need to stay at a bit longer. And you know quickly - but then you have to take notice. Ignore it and eventually you will have a full blown flare.

Nobody absorbs all the pred - it varies from 50% to 90% and is usually quoted as 70% which (obviously) is the average. And many patients don't feel good - partly the pred and partly the underlying autoimmune disorder which isn't touched by the pred and chugs away in the background making many people feel as if they have flu on a permanent basis. None of it is easy.

If you google polymyalgia differential diagnosis you should find a medscape article which lists some of the possible alternative diagnoses which can present with similar symptoms.

Thanks for that I will do......

5 years! You've been at this a long time !! 😕  I have have lots of side effects from the Pred as well. Were you taking 15mg when you went to the newest Rheumy?  I would be interested to hear what he says at your apptmt at the end of a May. If not PMR then what? My symptoms haven't changed a bit since the onset and starting Pred in July 2015 totally cleared them up. Then as I try to reduce they return. Same old story just a different day! I agree that the Dr's just don't know quite what to do with some of us. Fortunately mine is flexible and works with me pretty well. Hopefully you will find some answers. 

I've had PMR for 13 years now. There are others who've had it even longer.

I was feeling very ill at 11mg when I got second opinion.......pain/fatigue/shortness of breath/stiffness I could go on....I told him how I felt....and he scanned me for GCA....lucky I was ok there....this is why it baffled me to start higher at 15mg!.....but who are we to question the powers that be.....only the patient....

​I just hope I haven`t been on pred for 5 years for nothing....but when I asked what else he thought it could be, he replied, we`ll see....I did ask if he thought it was RA (like my younger sister)  he replied ...no....

​I will post on here how I get on....but I go now not expecting much so as not to be too disappointed!.....

I think when I found the forum I recall reading you had it 12 tears at the time! That's a very very long time and of course  wasn't  too encouraging to read as a newbie. I try not to focus on " how long" I might deal with it. It's enough to just go day by day for now.