I have been doing a slow taper from 8 -- two weeks at 7 1/2 and then two days on 7 and I am in pain again. Depressing. This is going to be a longer haul on prednisone than I'd hoped.
Flare?: I have been doing a slow taper from... - PMRGCAuk
Flare?
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Paulagcl
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Hello, a few approaches have been mentioned in replies previously. So, did you go from 8 to 7.5mg for two weeks and then dropped straight to 7mg? Or have I understood incorrectly?
I went from 8 to 7 1/2 alternate days for two weeks and then somehow misunderstood what I should have done, or probably more to the point got too optimistic and tried two days on 7. I went back to 7 1/2 today and will stay on that and see how it goes for a few weeks. I learned my lesson going too fast. I'm really depressed today but I'm going to get up now and do a gentle exercise class.
Getting into these cycles of reducing, setback, reducing, setback can be tough on the mental resilience! Well done for getting yourself to a class. Around 7mg can also make it harder as it is low but not low enough for the adrenal glands to work properly. It is easy to get excited if there is no reaction to a drop, but you need a couple of weeks to see if it is going to stick.
Accepting a much slower regime like 0.5mg for a minimum of 4 weeks and being more stable feels better in the long run. 0.5mg when you are on higher doses is a small amount but as you get into single figures, 0.5mg is a bigger proportion of the dose you’re dropping from.
I learned that lesson too.My body doesn't like me to go too fast.I wait at least 6 weeks before I drop a half mg.Iam at 7.5 but it's been over 4 years to get there.Good luck but slow is better for some people!
Hi Hunter134! Can I just say “some people” should be changed to “most people”? I have been down to 1mg since 1st June, almost November now, have tried a couple of times to get down to 0.75mg but PMR says no, so I am now carrying on at 1mg until next year. Because I am pain and stiffness free, I accept it. Keep strong.
I would be happy to get to 5 mg.Been a long journey for me on high doses.Was out on 15 mg over 4 years ago.Everytime I'd try to taper I d flare.Was on 10 mg for awhile too.This is the first time I've got to 7.5 mg.This disease has a mind of its own!!!!Wish you luck on your taper.
Thank you Hunter134. Keep smiling, we will get there.....eventually.
DorsetLadyPMRGCAuk volunteer
Have to say if you only stayed at 7.5mg for 2 weeks , then it’s not a slow taper in our books.
A slow taper takes at least 4 weeks to get from old dose to new dose… 2weeks is not long enough to know current dose is enough before you reduce…..
We have explained there is no point in trying to rush things, you just end up having to increase your dose…
I gave you advice in previous post - see this -
healthunlocked.com/pmrgcauk...
you're right. I was feeling good and misjudged. I started back on 7 1/2 today. I know you did. Sorry. I get so much conflicting advice.
Conflicting advice from whom? I think most on here would agree the slower the better, so I guess you are referring to medics….
I know a couple of people here who have had PMR and in a year were in remission. But they were younger. Coincidentally a close friend and someone else I know were diagnosed at the same time I was. They live in a different state and have different doctors so the three of us have been in contact, each with different advice from doctors from highly regarded medical centers. One of them tapered fast and is fine. One hasn't started tapering yet. And even on this forum, people have different experiences. My rheum had told me to stay on 7 for a month so I had planned to do that -- naively, it was hard to believe that .5 was enough to make a difference, but obviously I was wrong. It's a lesson learned.
Yes but as we are always saying your PMR is yours- it’s not the same as anybody else… no matter how much else you may have in common. Be that age, family or location… what works for them may not work for you and vice versa. You have to do what’s best for you!
Yes, I see that. Also, though, in defense of my rheum, I am one of his first patients on Kevzara since it was just approved for PMR so doctors are just now finding out among their patents how much (or little) it kicks in to fill in for the prednisone. The dosage of Kevzara is not something one can adjust. He is fine with my doing whatever kind of taper I want to.
There are several "versions" of PMR. Getting off pred in a year is very unusual - pre-Covid probably 1 in 5 managed it that fast but then were at a much higher risk of relapse. However, Covid and the vaccine both seem to have the potential to trigger PMR and it has been noticed that those who developed it after a vaccine are able to get off pred quicker, in months rather than years. It is nothing to do with the doctor - it is YOUR version of PMR that counts. If it goes well, you get off quicker but we often say, it isn't slow if it works.
Half of patients take about 15 months to get to 5mg pred - you seem to be well ahead of the curve, But it doesn't mean you will get there in that time - half of patients take longer. You have already struggled a few times between 8 and 7 and that is usually your body telling you you have arrived at the lowest effective dose for now. It doesn't mean you won't get lower - just not yet.
This is probably a question with an obvious answer but well, what can I say? Question is: Why does more activity cause symptoms to increase?
Some activity is good but when you have polymyalgia rheumatica, you'll need to find the right balance between rest and activity. Too much exercise is likely to make your symptoms worse, but gentle activity usually helps to ease pain and stiffness in the muscles of the shoulders, hips and thighs.
Medication only addresses the inflammation part of your illness, keeping the pain at bay, but your underlying illness is still there. Prod it too hard with over activity or extra stress and the current dose of Pred may not cope.
So as we taper, does that mean that inflammation can adjust to that but we still have the illness -- I've read that it can burn itself out, but if it doesn't, then we are on medication forever? I think this is all just getting into my head, finally -- but that is how the psyche works -- it lets in what we can handle at the time. Much like grief. Because part of this, of course, is grief for the life we had before having to deal with this. And at my age, for now in my last few years unable to do what I had planned. But it could be a lot worse, I realize that, so I am not falling into self-pity. I've had an amazing life, and great luck with my health until now.
PMR and GCA are described as self-limiting - so yes they do go into remission.. but in their own time. So until that time [no-one can tell you at outset how long that will be] you have to manage the symptoms.
Not sure if you have read this, if not please do. Maybe print it off or save it on computer so you can read in small chunks/at your leisure. It explains, hopefully in laymen’s terms about your illness and it’s management -
Can I reiterate for the benefit of others too, that a slow taper means dropping by no more than 10% using a schedule where the new dose is introduced on two days out of seven for the first week, say Sun and Thurs. Then three days for the next week etc. We have a couple of variations to choose from. Slow isn't dropping 10% in one jump for every day thereafter. Alternate day dosing causes problems for many and is detrimental especially once really low doses are reached. Unfortunately around 7mg another factor has to be considered and that is adrenal cortex function which brings with it another set of challenges. I've been at this for 6 years now. So if we feel our PMR has gone and reducing doesn't cause a re-emergence of symptoms it can still take many many months to get to zero. I did get to 1mg, am back at 3.5/3mg but now have Covid so am up to 3.5mg again and tapering is on hold. Just think who won the race? The tortoise or the hare....
I have linked my taper to Paulagci on a couple of occasions…😊 not much more I can do…
This sounds like you think I am not paying attention to what you are saying. I am new at this and trying to sort out a lot of conflicting information, and also am now becoming aware that each method still brings challenges, what should I consider serious or just par for the game, and so forth. My body seems to be doing something different with this every day. For now I am sticking with 7.5 for a month so that I am doing just one thing and then will introduce your slow taper. I didn't realize some days are better than others, that maybe some pain will reappear but not enough that I feel I need more prednisone since it is mostly at night when I've been inactive for a couple of hours, or first thing in the morning and then I have no pain at all during the day. I also didn't expect the mood swings since I never had a mood reaction other times I've taken prednisone, nor this time when I first started it -- I've always had insomnia so that's not new for PMR. If pain reappearing means inflammation is higher again then that's not good for my overall body so I need to know if that means I should take more just for minimal pain. Other such questions. I can't follow everyone's advice when it conflicts but it doesn't mean I'm not listening. I have gotten a few posts that have that tone in that, so I am sorry if how I write gives the wrong impression. That is the danger with this kind of thing and also with email -- no tone of voice or facial expression to add some light to the meaning of words we use. There is not a single in-person support group that I can find anywhere near where I live. I have started and facilitated such groups for other things in the past, but I sure am not up to that now.
No, that’s not what I was implying - was just saying you were aware of a slow taper regime… if you thought differently then I apologise
We can only give advice based on our own experiences and from what others have said works for them. Although we all have PMR or GCA or both not everyone’s illness follows the same path, many have other health or relationship issues which make life more difficult.
So we each have to discover what suits us best -and that’s not an easy journey especially when you don’t have someone to discuss it with on a F2F basis.
Yes, right. But this forum has made a huge difference to me, so I am grateful to have found it. I wouldn't have even known some of the questions to ask my doctors until reading the posts here. The medical system here, as you no doubt have heard, has taken a toll on doctor-patient communication like it used to be -- I'm lucky my primary care doctor (probably what people on the site refer to as GP) is very communicative, but that is pretty unusual nowadays. They are inundated with paperwork, appointments are kept short, Medicare has made cutbacks and so forth.
I did some research on adrenal fatigue and upped the vigilance on my diet the last couple of days and suddenly feel much, much better today, plenty of energy. Slept soundly last night. Main change being sure to include enough protein, not letting more than three hours go by without a nutritious snack, etc. I am trying to cut out caffeine, which is a tough one, but I think I can keep it down to one cappuccino in the morning, and the usual recommendations on an anti-inflammatory diet. All of which of course at times is a drag, but on the other hand pain is MORE of a drag!
Or rather, adrenal insufficiency. Apparently some conflict among doctors about whether either term is applicable! But let them have their disagreements -- we can take what we want from it!
What we talk about on here is steroid induced adrenal insufficiency or secondary a.i… which is different from primary a/i or Addison’s Disease when the steroids don’t work at all. Ours are just asleep when on higher doses of Pred, and for the vast majority do start working again as we lower Pred.
Good on your attempts to help them recover- but don’t push yourself too hard…and make life miserable.
Think many countries are struggling with healthcare .. unfortunately.
Yes -- I think France is rated highest right now for health care in western countries. I do realize this is steroid-induced re the adrenals and most of the info I found did make this distinction, though I decided to go with the overall suggestions for what they called secondary insufficiency -- if overkill, fine. Of course I will cheat in order to save my sanity -- just had a piece of chocolate! And though I have cut way back, life without a glass of wine at dinner seems beyond endurance!
First don’t consider it a race, although from reading many posts on this site for the past 4 years it seems some patients think there’s a prize for getting off Pred the fastest. Big mistake. I had the added aggravation of a Rheumy who felt should be off Pred within 2 years of diagnosis. People dealing with doctors with that kind of mentality doesn’t help. Once I hit 3 mg/d I really didn’t care how fast I tapered as from what I read, at that low a dose I could go for years with little concern. So…took my time. I sure some in the group laughed to themselves when learned I was cutting 1mg tablet in quarters aiming for an average 0.25mg decrease for a taper to a new dose. I wish the first thing people did when joining this group is read through the links. I just shake my head now when I read what some people are doing, it’s like we just keep repeating ourselves and no one is paying attention. I was lucky, I hit zero after 2.5 years. But I believe 6 years is now considered the real-world average including it taking some an extra year to get full Adrenal function restored. No benefit in the race other than having more pain and making it more difficult to identify what is the best dose at that moment of disease activity. I don’t have the patience of PMRpro and some others and starting to have the attitude, “By all means have at it, you’ll be the one to suffer.” 🤷🏼♂️😢
I don't think people think it is a race. I think we all want to get off it as soon as we can because there are bad side effects to it the longer you take it.
Correction, there “may” be bad side affects the longer you take it and it’s different for each individual and it’s dependent on daily dose and total accumulated dose which I think the latest recommendation is not to exceed 25 gms. “May” and “Can” cause show up quite a bit in literature pertaining to complications of steroid induced side-effects or complication. So, my approach was to reach out to my GP and Optometrist for regular monitoring. My side effects were easily managed and I was started at 80 mg/d which is considered a high dose, but 2.5 years I don’t believe is close to being considered long-term. Neither is 5 years I don’t believe. My cumulative dose even with starting at 80 mg was 18 gms. Side effects? Mild interocular Hypertension, easily managed with eye drops, no stomach issues as I have had GERD for over 20’years (I’m 69) and been taking 40 mg 2x/d of Prilosec and being monitored. So even to 80 mg on an empty stomach with no issues. No problems sleeping even when on daily doses greater than 15 mg. Mild increase in BP, put on lowest dose of Metoprolol. No significant change in bone density, but I did supplement with Ca, D3 & K2. Until I got below 20 mg I felt like I had a caffeine high, but got used to it. My point I’m trying to make is don’t fret about “possible” side affects, but monitor for them and determine whether they can be safely managed. In the meantime, focus on managing the PMR and doing what is necessary to minimize or eliminate flares. Following DL’s 5-7 wk simple taper with no more than a 10% reduction is a good approach and imo experimenting with bouncing the dose or attempting to taper more quickly is not wise. If you have other conditions that complicate the issue with taking Pred then, discuss all the options for the best approach. MTX might help, but it takes 2-3 months after starting to see any potential benefit. Is it worth adding another drug with potential side effects that maybe will help? That’s your decision. After being hounded by my Rheumy and declining I finally gave in, it had no impact for me. Others’ I know have. But to me that begs the question. After 3 months is the new dose of Pred with MTX significantly different that what would have been expected otherwise? I don’t believe in trying to reinvent the wheel. The process suggested by the most educated and experience here (PMRpro, DL et al) have been proven. I suggest people follow what they propose and not attempt to second guess.
Just my humble opinion meant in the spirit of wanting people to be as comfortable as possible while dealing with this condition.
PS: Once I got below 5 mg my interocular hypertension reversed and I was taken off the eye drops, same with high BP. I’m not due for another Dexascan until next year. But I stopped taking Ca supplement but still take K2 & D3. My Vit D blood levels are monitored and currently slightly higher than centered in the recommended range. So basically, at zero for a year I’m back to my previous normal.
I agree that an unsuccessful try at a taper can be disheartening and "depressing" . My many "unsuccessful " tapers using different agents like methotrexate etc over 2 +yrs or so was frustrating and disheartening. These feelings were a bit different with my transitioning through 5mg and below. It did seems like an eternity to reduce to 2mg where where I "parked" for the last year having 2 orthopedic surgeries. At my rheumatologist visit last Friday we discussed reducing below 2 mg. Part of my brain shouts No and another voice tells me it's probably a good idea. Success breads success. This forum has certainly helped with providing me with context, strategies to succeed to help me with my many lessons in learning patience,kindness and compassion. .. Tons of lessons! 
wink. I have maintain a daily journal for decades for the last 6 -7 yrs to include pregnisone dose. Just a descrete number so I'm not dwelling on it daily and can look back on a trend objectively... and data for MD to help her care for me. I use the analogy that pregnisone taper is like turning a big cruise ship around..very gradually ( while my physiology adapts) . Forgive my wordings no offense intended. I neded a strategy to tame my expectation / disappointment and get in tune with really and mother nature.. All my best, toward your success !... sincerely jeff
I've learnt this the hard way too! I'm just so impatient and fed up with cushing symptoms and not recognising myself anymore. I was taking 8.75mg oral preds for my adrenal insufficiency, fibromyalgia and osteoarthritis and a 5mg pred suppository every evening for my colitis = 12.75mg pred altogether. I dropped the suppository and went up to 12.5mg of oral preds to compensate but after 11 days I'm increasingly in pain in my back, groin and hips radiating down my left leg worse at night causing no sleep. I can barely walk. I've realised the suppository is maintaining my inflammatory levels. So I took a suppository last night and have taken 10mg oral preds today and there is slight improvement. I'll see how tonight goes🤞🏻If it continues to improve I'll stay here for a month and when fully stable again I'll do the slow taper for sure! In the past I've dropped way too quick and I've got nowhere in the last year tbh. I wish you luck 🤞🏻
I hear you! I’m exactly there but decided after 2 painful weeks to increase back up to 8. Frustrating but better to be functional.
Good luck ( to us both). Tge day will come when we don’t have to choose between mobility and side effects
Have to say that all of the replies are very interesting to me. Mostly I can identify and acknowledge the similarities. Indeed this insidious disease beats its own path for us to navigate. Today I visited my G.P. basically for scripts, she asked me whether I would like to go back to various specialists I saw last year re my P.M.R. I could have laughed, instead I politely declined and told her of the valuable advice given by Ambassadors on this site. Immediately she lost interest, head down and moved on
I have gained so much help and dare I say hope here. Bless all and thank you 😊
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