I've now been on this forum for aprox 2 yrs, having being diagnosed with PMR 6 months prior) & it's been very useful but I haven't really joined emotionally. That is changing because I now feel more debilitated than when I first contracted the disease - I am in tears first thing in the morning when I can hardly move around & become fearful of actually getting out of bed. The symptoms are mainly in my thighs so walking becomes very difficult & sometimes a leg will partially give way so I have to be very careful. I have reasonable days & bad days & avoid sitting down for any length time as on rising the pain will return, there doesn't seem to be a pattern. The PMR was diagnosed during Covid so I have a new pair of ski boots I've never worn (& wonder whether I ever will) & bought a rowing machine (because the gym closed) which I've hardly used. I'm now 73 yrs old & have a 13yr old daughter & it saddens me greatly that I'm now hobbling around like an old man, when before I was reasonably fit. It has also effected me mentally so sometimes I become quite depressed. Treatment started with 25mg of Pred & in 5 days I was feeling almost back to normal. Then over 18 months I got to 10mg feeling OK but not as good as when I was on 25mg. I was then advised to decrease slowly but when I got to 7/8mg symptoms returned with a vengeance so of my own accord when up to 10mg, but this made little difference so contacted my rheumy who said go to 15mg - but symptoms persisted & then increased & that is where I am now.
Recently spoke with rheumy again who told me how very bad steroids were for me & said to carry on as is & try to get down to 10mg, hence my post here as I'm confused & upset. I'm thinking that what I should do is go back to the 25mg I started on when I felt fine & then slowly reduce again, but am now a little scared having been warned how very bad steroids are, which was also confirmed by my GP.
A number of questions:
Do you think I should go back to 25mg & then start reducing again, this time being much more aware that when I do so that if symptoms re-appear I should quickly up the dose?
When reducing at what rate/pace?
If having to up the dose if symptoms reappear by how much?
If I'm feeling good can I start to exercise & try to regain the fitness I had before or will this just acerbate the situation & make things worse?
I've been prescribed amitriptyline 10mg to help with pain. Has anyone else been prescribed this & has it helped in anyway, or have the side effects been a negative?
I want to make 2023 better than 2022 & remain optimistic, but now feel I need to be more personally proactive in my treatment.
Any advice, comments or past experiences would all be more than gratefully received.
I previously mentioned a company Phoenix Labs that supply gastro resistant 1mg Predisolone. Sent this info to my chemist copying in my GP surgery & low & behold they appeared!
A Very Happy New Year to Everyone - Peace & Prosperity to All.
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Purpleprimate
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amitriptyline is not a painkiller for PMR, although several people take it to help them sleep. It seems you got down to 10mg OK. I must admit I often thought I could feel as good as when I first took the steroids. It sounds like you may then have reduced too quickly or by too large an amount at one time. I find reducing 0.5mg over four weeks under 10mg works for me. How much time are you giving it on the higher doses? Exercise is a good idea but you need to take it slowly. Going for the burn is not a good idea!! I go swimming and I love it. You sound a lot fitter than me so see how you go.
Interesting you say amitriptyline is not a painkiller for PMR because my rheumy suggests it is, but I'm not sure it's going to do me a lot of good although I'd try almost anything! I can't quite remember how quickly I reduced from 25mg but I think reasonably quickly but then stuck on 10mg for sometime while symptoms were tolerable, then trying to get to 5mg I was going down 0.5 every 2 wks but then going from 8mg to 7.5mg all hell let loose. Days when things are bad I wouldn't be able to swim. Now I know a bit more I might be able to refine how I reduce.
If one reduces the inflammation does that help in totally ridding oneself of PMR or is it just controlling the disease until it fades way on it's own accord?
My wife has (a short) cold shower most mornings as she says it's good for her. I haven't tried that! Apparently fasting is also good for your health. Given PMR is an autoimmune disease it makes me feel a if the immune system needs to be given a shock to make it function properly again, but I'm sure all these things have been tried.
Your immune system is over reacting. The steroids suppress the immune system so it does not react and so they reduce the inflammation. The PMR never actually goes away once you have had it, but it goes into remission, hopefully forever although some unlucky people have second bouts of it. Steroids are really the only thing that helps PMR although some doctors seem a bit hazy on the subject. They do just control the disease and you slowly need less and less to keep the PMR at bay. It does seem that you started at quite a high dose of steroids and then went hell for leather reducing. PMR is a tricky little beast, once it has a small foothold it will bite back, so you must not treat it with contempt or it will come back and bite you!! PMR wants Respect man.
"If one reduces the inflammation does that help in totally ridding oneself of PMR or is it just controlling the disease until it fades way on it's own accord?"
No - pred is only a management strategy, it relieves the inflammation which is what causes the symptoms including the pain. It cures nothing - it doesn't control the actual disease process in any way, only the inflammatory effects of the disease process.
Amitriptyline is an antidepressant. I took it years ago when I was suffering from postpartum depression. It’s one of the older antidepressants. It helped me with my depression tremendously.
Many antidepressants help with pain. Not sure how it works but many doctors prescribe it for people with chronic pain
I think you may have partially answered your own question in that on 25mg you felt almost back to normal and probably didn’t take on board the fact you have a serious systemic illness, and may not have treated it and yourself as such. Not a criticism, just an observation.
On 10mg is quite reasonable that you didn’t feel as good as you did on 25mg - I think most would agree with that - 25mg is at the highest end of the starting dose.
Plus at 10mg for some people the adrenals need to start thinking about working again, I know we always quote y/8 mg, but it’s an individual thing ….and most certainly when you got that little bit lower the depression you describe is typically a sign of adrenals struggling.
As I said in other reply, your Rheumy has been less than helpful in his comments re steroids, and no wonder you feel despondent.
How long have you been back at 15mg - long enough to give them time to work? 7-14 days? That’s usual recommendation for dealing with a flare. You may need a little more ~ sat 17.5mg but not as high as 25mg. I think that’s unnecessary and probably won’t do your self confidence at lot of good.
Have a look at this for treating a flare - and certainly come down in 2 or 3 steps - with a week or two at each stage - stopping vat 10mg for a while before you start a very slow tapering plan with 0.5mg decreases…you can mix and match enteric coated tabs to get half mgs
Thank you for that. I think I just need to get to a level of Pred where I feel at least reasonable & then take a lot more care in reducing. I've been on 15mg for awhile & symptoms have become worse so I think I need to go higher before going down again. I've printed off your 'treating a flare' so that will be a good guide .
You are not tapering relentlessly to zero - you are titrating the dose to find the lowest effective dose: the lowest dose that gives the same symptom relief as the original starting dose did. You should never feel worse at the end of a taper step than you did at the start.
Once you get to 10mg you need to really take the foot off the gas - but after a real flare, sometimes you won't get as low as you did the time before. Changing the dose every 2 weeks is too often - your body never gets a chance to settle down and know where it is.
Apologies, another question. When you find the ideal dose, given you are still trying to reduce, how long would you give it before having another go? You don't want to be taking the steroids when the PMR has had enough & left.
Most people find a month at a time is okay, but really you don’t want to have one eye on the calendar all the time, that what gets people into trouble…
PMRpro I think I misunderstand your feedback to Purpleprimate. When you write one is " not tapering relentlessly to zero" , are you indicating we can never expect to reach the point where we are not taking any prednisone? I am likely reading that incorrectly. Thank you for clarifying.
Some people will get off prednisone when the PMR goes into remission. However, some people remain on a low dose for life. Some drs. are beginning to think that staying on a low dose prevents major flares that result in far more prednisone over a lifetime than the small daily maintenance dose.
No, not at all. But at any given time there is a level of pred you will require to manage the inflammation. PMR is a chronic disorder, you will need some pred as long as the underlying autoimmune disorder is feeding the inflammation. You haven't taken a higher dose of pred which has "cured" anything, it has no effect on the a/i disorder, it mops up the result of the a/i disorder. When the a/i disorder burns out and goes into remission altogether, then you will be able to stop taking pred.
In the meantime you took a dose of pred that is higher than you are likely to need to clear out accumulated inflammation, a spring clean if you like. Then. in a process also called titration, you taper the daily dose slowly to find the dose that manages the daily dose of new. inflammation. It is the dose at which the NEXT dose down is not enough - as soon as that is identified, you stop reducing the dose and go back to the dose that works. After a few months you try another very small reduction - if it works, you can try another, If it doesn't, you go back to the good dose.
But there are many doctors who don't understand that aspect and will tell you to reduce the dose even when you have symptoms - some believe that if you are on any pred you can't flare - which is patently silly thinking! If you start to get niggles that seem familiar it is a sign you are skating on thin ice - retreat for now, It may be fine next month when you try again but you cannot ever force a reduction that your body is not ready for. And you will get into trouble if you do. It is important to learn how to distinguish between steroid withdrawal and PMR as they can be very similar, If you go slowly enough and with small enough steps you can pretty much rule out the steroid withdrawal aspect and you won't get into the worst possibly scenario which is yoyo-ing the dose. When that happens you will really struggle.
No - most people do get to zero, but you need to reduce in a timely manner and listening to your body, and taking account of what is happening around you that might derail that tapering.
PMRpro and I use the phrase very often... what it means is not reducing every 1st day of the month (or whatever) irrespective how you feel...
It might say every 3 weeks or every month in the guidelines, (but it does also state guidelines only and need to be adapted to suit individual and disease activity).
If you have a perfect life with no disruptions or hiccups it may be achievable, but we are humans and don't...and why so many people end up flaring.
Look at it as finding the lowest dose that controls your illness.... as the illness diminishes you can go lower... but be in tune with your body, rather that the date on the calendar - by all means use it as a plan, but don't be ruled by it.
I've been on 18mg for over 5 days now. Initially there was some relief but today I went for a walk & had to stop half way as my legs are not working properly & my feet like big slabs of meat slapping on the ground. As I said previously think,, I was 'alright' on 10mg but then the rheumy wanted me to reduce & from then on it's been a nightmare. Maybe I should now go to 20mg or 25mg where I started two & a half years ago. I feel much worse than when I was first diagnosed. What are your thoughts? I was to see Rod Hughes today but it's been put back to next week. Getting very down.
Might be worth trying 20mg and see if that helps….but if your weather was as cold as ours today [albeit sunshine was lovely] might not have been a good idea….. hopefully the extra will help.
That's what I thought, so on getting out of bed this morning with sharp pains at the top of my legs I took 20mg. It's very dispiriting in having gone quite a way down the hill I've now got to go all the way back up! So is life - looking forward to seeing Rod Hughes next week.
The other thing to remember is to take it a bit easier in the rest of your life, too. Give yourself a chance to get a bit stronger in yourself, and don't expect to be as strong and active as you were before this PMR/pred adventure began, at least not to start while the disease is still so active. I'm grateful for pred and its great control of my pain, but it is a bit of a two-faced friend.
Staggering around first thing holding on to furniture to get to the bathroom.
So today I'm starting on 18mg & see where that takes me. I'm thinking I need a new rheumy.
If at the beginning of all this I knew what I know now I might be in a better place. My old friend in Cornwall did everything with his GP who sounded very empathetic & knowledgable but my GP surgery has gone into meltdown.
I'm not sure but I think you are not allowed to suggest a consultant/doctor on this forum but I live in central London & if anyone who can suggest a sympathetic rheumatologist who is not just going say reduce the prednisolone regardless, I would be extremely grateful.
Raise a new post asking for feedback on Rheumies in your area…. You will get replies.. sure PMRpro will know some, and jinasc has a list of a few which provided she see this will PM you about.
For completeness - here is the reply I wrote on the other thread:
"I think you should repost this as a thread in its own right - that way you will be heard by a lot more than just DorsetLady and me (we see everything because we follow everything)
"who told me how very bad steroids were for me"
Well I'm sure he believes they are, I wonder if he has any idea how bad PMR is for us. Or what he'd say to me if I told him that without 13+ years of pred he wouldn't have to worry about whether it was good or bad for me because I would have topped myself a LONG time ago? I doubt he has a clue what living with badly managed PMR is like.
Now he is showing his lack of understanding of PMR - if you have relapsed, then decreasing the pred is only going to make things worse. When the symptoms started to reappear he should have slowed - even stopped - right there. Not permanently but to allow some space and a regroup.
The problem you have now is that a flare has got hold and they are often harder to get under control than at the start. I think you WILL have to go back to a higher dose and take it very gently but will he agree? How is your relationship with your GP? Has the rheumy made noises about "steroid sparers"? They really might be worth the trial - can't be much worse than you are now and might keep him on-side.
I can't offer anything on amitriptyline as I've never taken it. I know quite a few DO take it - some for sleep disturbance. Others may be for pain - but I don't understand its role in PMR since the pain it deals with is nerve pain and PMR isn't nerve pain. Ask the question in a new thread.
And gentle hugs - there are a few of us who have been where you are now. We have your back."
One thing I've been questioning. All my pain is in & around my thighs, front & back, sometimes a little up into my glutes but nowhere else. Do I really have PMR? When it first appeared it was more around my shoulders, probably a bit all over, difficult to quite remember as it started with carpel tunnel which I'd had before so though with a steroid injection it would just go away like last time. But 25mg of Pred stopped it in it's tracks & my blood tests showed inflammation was up. Everyone talks about shoulders & hips, maybe there are slightly different symptoms between men & women.
No - guidelines say hips and/or shoulder girdle. Some have just shoulders, some have just hips, some have both. There is no fixed clinical picture and there isn't something as simple as a gender relationship. Nothing in PMR is as simple as some would have it.
Find a rheumy who understands that pain leads to inactivity, which leads to far worse issues than bone loss, which can be ameliorated with proper nutrition and supplementation.
I take 30 mg of Amytripaline and it has been very good for me. It has removed some of the anxiety about my illness, the drugs involved and life in general as well as helping with pain issues.
My rheumy prescribed amitriptyline for me, but I didn't take it as I didn't want to take an 'anti-depressant'. Dr Google put me off it too 🙄 🙈 However, 3 months later at my next appt, my rheumy explained that doses of 100mg plus per day were used to treat depression, but lower doses were used to 'relieve pain'. She explained that as I wasn't sleeping, I was literally tensed up and in pain for 24 hours a day and was therefore constantly holding myself in certain positions to relieve the pain, and that meant that my muscles were never relaxed at any point, like they would be if I was asleep. If I could sleep properly at night, then that may make a difference to some of the pain I felt during the day. That made complete sense to me and allayed my fears, and I took some that night and slept like a baby for six hours. It doesn't help me go to sleep. Sometimes I nod straight off, but sometimes it can take two or three hours to drift off, but when I am asleep, it keeps me asleep till morning. It has made a huge difference to me, getting sleep and I wouldn't be without it now. I've never suffered any side effects, and I usually suffer the side effects of just about anything I'm given! It has been brilliant for me, but a friend of mine says it makes her feel like a zombie most mornings. You don't have to wean yourself off it, you can just stop taking it, so it might be worth a try and see how you go 💁
I am taking it at a low dose of 10mg but haven't really noticed much difference. What I have found which is interesting, that if I have less sleep, say 6/7 hrs rather than 8/9 hrs I might feel less rested in myself put my PMR is considerably less painful first thing, & it is quite a marked difference. Anybody else found that?
Yes, I find that if I sleep longer, then my pain is worse when I get up, I guess because I've been in the same position for longer when I actually sleep as opposed to when I am tossing and turning all night when I don't sleep. Same as when I sit for too long in the day 🤔I took Amitriptyline because I wasn't sleeping as I was in so much pain. I suppose it wouldn't make any difference if you are already sleeping without it!
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