Ian 50 yrs old, I have been diagnosed with PMR, my doctor started me off on 20mg pred daily which worked well on managing my symptoms. After 2 weeks I tried tapering down to 15mg but had a flare up immediately so went back to see my GP, he then told me that I’d tapered down to far! (Would have been useful to have been told prior) . So, I went back on 20mg for 2 weeks and started tapering yesterday at 3pm (17.5mg). I woke up this morning with pains in both upper arms and pains in my upper thighs. I am reluctant to go back up to 20mg so today I have stuck with 17.5mg to see how I get on. This evening, some symptoms are still there but it does seem to have calmed down since this morning.
Can anybody advise? I am currently waiting for a Rheumatologist consultation which I hope will be soon
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Leepeelee
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If your symptoms or similar return immediately when dropping dose it’s likely to be steroid withdrawal symptoms (I.e. your body reacting to the reduction in dose). That should improve over 2-3 days, A flare usually takes longer to surface.
Having said that a reduction from 20mg to 15mg is just too much - you should have been given better guidance. We always quote, not more than 10% of your existing dose - yours was 25%!
This is a fairly normal reduction : 20-17,5-15 - 12,5-10 - but it’s not achievable for everyone. Ask your doctor for 1mg tablets then you have more options.
That sounds suspiciously like steroid withdrawal rheumatism. If you reduce your dose in too big a step your body notices and protests. Steroid withdrawal typically starts immediately you change the dose and then improves over the following days. Having gone to too low a dose is the other way round - the pain takes a few days to appear and then steadily worsens.
Keeping the steps down small or using a slowed taper helps avoid that trap:
You might want to give yourself more time to get that accumulated inflammation cleared out. And future reductions should be slower as well, so you can tell whether the current dose actually "took" or not. As has been stated, withdrawal pains come on fast and resolve over a few days, but relapse pains come on slowly and increase with time. Two weeks just isn't enough time to tell whether inflammation is accumulating under the new dose. Unless there's a medical reason to get off pred ASAP, give yourself 4 weeks to acclimate and evaluate.
Consider too that there are a number of things that can cause mini-flares or full blown flares: stress, too much physical activity (or the wrong kind), bad weather, disrupted sleep patterns, dietary choices, a cold or other bodily invader...the list goes on.
Pred isn't curing your PMR. It's treating your PMR. It is clearing out and controlling excess inflammation, and it's the excess inflammation that is causing your pain. The goal is to find the level of medication that controls your symptoms. It is not to "get off pred" as fast as you can, unless there is an imminent threat to your health posed by the medication.
Since it sounds like you didn't get a lot of information at the start: you should be taking calcium and Vitamin D to help protect your bones. Try to increase your calcium intake from food as well. Cut your salt and carb intake to avoid bloating and weight gain (pred can raise your blood pressure and changes how we metabolize carbs). Take your pred with non-spicy food to minimize digestive issues.
You have an autoimmune condition that requires you to get additional rest. PMR inflammation reduces the oxygen in your capillaries, which is what leads to the muscle aches. Therefore we are predisposed to injuring muscles, tendons and ligaments. Exercise need to be slow, not too many repetitions, and focused on keeping your range of motion for the time being. Building strength and stamina comes later. What you definitely don't want is an injury that complicates everything, and slows your recovery.
There's lots of good, scientifically based information on this site. Along with that comes the support of other members who are on the journey. We share our successes and our failures, our step forward and falls back.
Keep asking questions. Chances are that someone will have been where you are, and though your experience may vary, they know what you're feeling.
Thank you so much for your very informative response.
Currently, the symptoms in my arms are improving and my thighs seem to have returned to normal, hopefully tomorrow will bring further improvements, if so, do you think that I should remain on 17.5mg daily for a month before I try tapering again? Or, If the symptoms are bad again in the morning, should I increase back up to 20mg?
You're really early into your treatment, and jumping around isn't going to help you figure out what works and what doesn't.
I'm not a medical person, just a fellow sufferer. But if it was me, I'd go back to the beginning for a month, and then try dropping 1mg in 4 weeks and see what that does. If you don't have 1mg tablets, ask your doctor for a script so you can adjust your taper slowly. (I am not a believer in useless suffering.) Get yourself a pill cutter so adjusting your dosage is easier to accomplish. Just as a guideline, at the end of a taper, you should feel as well as you did at the beginning. And don't start a taper just because the calendar says it's time. If you're feeling a bit off, waiting a day or even a week is better than kicking off a flare. Even .5 mg more can make a difference in your symptoms.
And don't forget the calcium and Vitamin D, which should be taken at a different time of the day than your pred dose (calcium and pred interfere with one another, so 4 hours apart works pretty well), and calcium and Vitamin D help one another, so take them together. I find my aches increase a bit when I forget my supplements, but your mileage may vary. I think you'll find that taking pred and supplements with food decreases the likelihood of digestive issues.
First things first: get deep rest every day, especially if you're not sleeping well at night (pred can do this to you, but it improves with time and taper). Deep rest means finding a comfortable spot to read a book, watch a movie or TV, listen to music, or something else calm and quiet. You need to treat yourself as though you are sick, because you are. And you need to resist the urge to go back to your normal routine just because you're having a good day. That's going to backfire on you in a day or two. Take frequent breaks when you're doing something physical. Stop before you start feeling it.
Cut your salt and carb intake to avoid the side effects I mentioned before. Blood pressure hikes and weight gain can come on pretty heavy at these dosages. Best to avoid that as much as you can. Cut your sugar intake, too, as pred can also raise blood sugar levels. When people ask me what to eat, I point them to the Mediterranean diet, which is more of a lifestyle diet than a weight loss diet. There's lots of variety and flexibility so you don't get bored with it, and it's all-around healthy.
I tend to think you should stay at 17.5 for at least five days, unless you notice a significant worsening of symptoms, in which case follow Good Grief's advice. This will give you a chance to find out if the reaction you had to start was pred withdrawal, which I suspect it was. You said you felt better later in the day, that certainly sounds like pred withdrawal, and you probably don't need to go all the way back up to 20, which is in itself a good starting dose, but certainly not at the lower end of the recommended starting range, which is 15-25, so you are still getting a good dose at 17.5.
Once you are sure that it was only pred withdrawal and you are feeling good, still stay on 17.5 for a few days more, then start a slow taper plan such as PMRpro gave you the link for. If you can get 1 mg tablets, taper by only 1 mg at a time.
If the aches post reduction start to improve in the first few days stay there, use some paracetamol to ease it maybe. Those are signs it is the change in dose, time will sort that out and getting into a yoyo pattern with the dose is NOT a good idea.
We used to tell people to clear the decks and go into hibernation for the first week after a change in dose, especially in the days where everyone thought you should just drop from every day one dose to every day the new dose overnight.
Keeping activities and stress to a minimum does help - what helps even more is to make the drop as small as possible - 1mg every 2 weeks is easier than 2mg at a time, but you do need to stick with a dose for 2 to 3 weeks at least to be sure that pain was "only" steroid withdrawal and not that the dose is now too low in which case the pain will continue to get worse.
The rule is small and slow - it isn't slow when it works though.
When you are sure that your symptoms are settled, try going down by 1 mg drops. I stayed on my initial 20 mgs for 6 weeks, too long I expect but I felt really good after months of pain and flu feelings. I hope you get a good Rheumatologist, it makes such a positive difference. Don’t tolerate symptoms of inflammation, they tend to get worse and are then hard to control again. There are tapering programmes permanently pinned on this site if you do a search. They are pretty tried and true. Good luck!
The advice my partner had was to stay on the initial treatment dose that controlled symptoms for a month prior to tapering. Then dropped by 5 mg steps weekly. This was a little fast and so she did it in 2.5 mg steps.
All has worked well so far... As she gets lower (to 10mg) the advice has been to stay on the dose for a month each time she stops.. Not got that far yet.
Ok, I woke up this morning feeling a lot better, I still have a little amount of stiffness in my arms but hardly anything, I can lift both arms up above my head again relatively easily which is a good sign.
I’m pretty confident that by this evening things will have calmed right down again. If so, I am going to stay on 17.5mg for at least 1 week before attempting a further reduction of 1mg!
I think that one of the problems with this taper attempt may have been due to the fact that I was in the middle of fighting of a rotten cold! I definitely will not try tapering again until I feel well enough to do so.
Ok, I was hoping to have seen more improvement this evening but the mild symptoms are still here, mainly in the upper arms.
I have been taking it fairly easy all day so definitely not over doing things. For the last 2 hours, I have been relaxing on the sofa, my arms seem to have got worse since I sat down to rest.
It will take a few days for muscle soreness to resolve - but if it is the symptoms reappearing because the dose is now too low for YOU it will continue to worsen. There is also myogelosis to consider if you aren't moving - muscles stiffening because of inactivity is a typical sign in PMR.
My issue is a little bit different (GCA in Jan 17 and started at 60mg/day), but what GOOD_GRIEF says is really sound, along with everyone else of course!. Only you know what works for you and the priority is to manage yourself. You are different to each and every one of us and only you know what the symptoms are and what you can cope with. I had a couple of flares, which were very obviously just that at the time, but in my reductions I have had to 'bite the bullet' a little bit as I now know that when each reduction occurs, there is a pretty severe dip in my resilience/performance and I have to take it slowly (even more so) for about a week. Listen to the body, not just the doctor! Good luck.
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