I have posted a couple of times but it doesn’t show? See if this one works. My GP and RHEUMATOLOGIST are really scaring me. They want me off pred because of the side effects. Today I am on 22 day 3 and still have pain. I tried what rheumatologist recommended but too much of a jump. And that’s why I’m at 22. My body seems to respond only to half tab not 5 or 3 etc steps forward. Am I doing the right thing. Also I understand that one should not make a move to reduce unless there is NO PAIN. IS Is that correct?
Need help on reducing : I have posted a couple of... - PMRGCAuk
Need help on reducing
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Artwatercolour
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I'm on the same dose and they also want me off it but I have said only when it seems my body is able to reduce further. They have accepted that now and I agreed that I also wanted to reduce as soon as possible, but like you, it seems my body is not happy at too big a drop at this level. Got this far last time and flared. Trying to get over a cold this time so waiting for a more stable situation. Be firm and don't buckle. Good luck.
Thanks for your support
It seems the pain roams from day to day…is that the way it works - like left hand wrist and forearm and right knee then the next day s different combination. Today right hand is so bad I can’t clinch. All other body parts are much much less or no pain. So whilst staying at 22 do I continue for a month and hopefully the pain subsides - is that how it works?
What activity do you do in the day?
3 days a week I work in my office at home. Then shopping rest and small amount of gardening clean house etc
Is there any pattern of the areas to the aches a day or two after specific activities? For example are you sitting in the office all day at a computer holding a mouse? or in a fixed position? Is that when your hands or shoulders hurt later on? When you clean, do you go at it and blast through doing things like hoovering, using your arms to scrub or polish? The problem with housework and gardening is that because it is classed as normal behaviour we tend not to rate it as strenuous when it really can be. At that level of Pred my muscles were not able to do all that and I didn’t even have PMR. With dosages going up and down as well, I imagine it could be quite hard on the body.
Have the docs explained how they have ruled out other conditions that it may be or you have alongside the PMR?
Thanks for reply. And no drs have not said anything about other conditions but I’m going to ask.
Sounds like palindromic rheumatism rather than PMR
I had to argue for smaller steps because I couldn’t deal with life at home with the withdrawal in top. I said better I keep going down than back up because I can’t cope or have a flare. They couldn’t say much about that but it wasn’t pleasant having to stand my ground. They couldn’t stop prescribing Pred because that would be dangerous.
Are these side effects ones you are getting now or are they potential side effects they are concerned about as a general principle.
I don’t have any pred bad side effects but Drs fear they could get me if I stay on the high dose
These are the pains I’m getting now
DorsetLadyPMRGCAuk volunteer
As SnazzyD says think we need a bit more info about side effects….what you have, or what doctors think you might get from being in highish doses.
Your journey doesn’t seem to have been very straightforward- a few months ago GCA was suspected - and think you were upped to 50mg. Have they now decided it’s not which is why they are trying to reduce you more quickly than your body seems to be able to cope with?
Sorry to ask questions when all you want is answers, but we do need to know all the facts before we can offer a meaningful reply. ..and what do you mean by half a tab? What size tab?
I do not have CGA was checked at emergency and eye dr and discussed with Rheumatologist. I grind my teeth and had not been wearing night mouth guard for months. When I suspected GCA I went from 12.5 to 17.5 but then in body pain and up to 22.5 for 14 days then 17.5g for 7 days with no pain then 13.5 for 14 days and hit a wall pain and felt horrible back to 17.5 for 6 days pain up to 22.for 14 days. Pain in hand knee elbow. Half tab is 1 mg.
I note from your profile you've been diagnosed with PMR for a couple of years and struggling with dosage much of that time. What I'm writing below would really apply to a relative newbie, but I'll post it anyway. However, have you been checked for any other possible sources of the pain? See "differential diagnosis" partway down this page:
uptodate.com/contents/clini...
I strongly suspect the main problem is, as you already suspect, too big steps and too quickly. Although we tend to recommend using one of the slow taper plans for 10 mg and lower quite a few people find them useful at higher doses. You need to find the best dose to control your symptoms - and stay there for about a month. If you are currently doing well at 22 mg, stay at this level for a total of four weeks, then your aim is to reduce, using a slow taper method, by no more than 10% a month. Remember "It isn't slow if it works". You will end up with a lower total pred intake if you are able to avoid flaring. Slow taper is the only way to avoid flares. You can find the slow taper plans in the pinned FAQ post.
The side effects the doctors fear are probably high blood sugar, weight gain and bone thinning. All of these can be controlled, mitigated or avoided altogether. Cutting carbohydrate intake drastically, especially the "white carbs" - refined grains, sugar, etc. -helps with weight and blood sugar. Bone density can be protected also through diet, appropriate exercise and a few supplements (most importantly calcium, Vitamin D and Vitamin K2).
The doctors may want you at a much lower dose of pred to avoid side effects but there is no point rushing you down if all that happens is the disease flares up. No point avoiding side effects if you are also prevented from enjoying the beneficial effects. This is one time when slow and steady wins the race.
Thank you for your reply.
The side effects the doctors fear are probably high blood sugar, weight gain and bone thinning.
Why are other side affects rarely mentioned. I believe these are also important for those struggling to reduce. Fortunately I managed to get to zero in November and so far have managed to stay there, good apart from weakness in my arms I am ok at the moment. When I was on Prednisolone, I suffered with terrible tendon pain, carpel tunnel, unable to pick anything up. It’s difficult to differentiate between PMR and Pred side affects.
There are also many other side affects to watch out for when using steroids, one of the major problems of using steroids such as prednisone is they can cause muscle wasting and weakness as well as tendinopathy, etc when taken long term.
I did my reading when first diagnosed and took myself off to my ophthalmologist. (My GP never mentioned GCA nor suggested I should have my eyes checked, including pressure.) He didn't see any sign of GCA, but my ocular pressure was high so he wanted to monitor that in case I needed drops. I was already tapering by then and it never got worse. (It improved steadily but was not normal until I was down to about 5 mg, and has actually continued to decrease a bit more even when my dose was high last year, so go figure!) But the numbers he told me were actually higher than a friend of mine said her eye doctor used to diagnose glaucoma and put her on medication. I don't know why we aren't told to get an eye exam, whether or not we had GCA symptoms, just because there is the chance of steroid-induced glaucoma, an invisible side effect (like the bone thinning, but there are no vitamins or minerals to stave it off). Fortunately I think it is a relatively rare side effect. I think the three the doctors mention to us are very common, unless we actively work to counteract them. I agree we should be warned about muscle wasting and encouraged to maintain a reasonable level of physical activity.
Glaucoma is a set of symptoms - raised presssure is just one and the other 2 must be present to say it is glaucoma.
And muscle wasting is mentioned in Guidelines - with the recommendation for an appropriate exercise regimen. Sarah Mackie was doing a study with exercise as a component - just walking and increasing targets I think but I'm sure her patients will know better than me.
Yes, but you can still get damage. I've assumed pretty much what you just said, that because it was steroid induced the bar for needing medication was higher than for someone like my husband, for example, who inherited it from his mother. But it was significant enough that, although I used to see eye doctor every two years, for that first year on pred he saw me every four months, and after that, as the numbers were trending down, annually. He said as long as I was taking any pred he would see me annually, even when my dose was so low for so long.
I have done a gentle weight lifting f exercise 3 x a week BUT recently not able to do with hand and elbow pain. Today the only pain is my right hand - swollen and can not clinch.
Hi Liby57 do you think this is why my arms seem to have lost muscle tone and they definitely feel weaker. I am now on 5mg but was tapered too quickly last year by 1mg every 2 weeks and finished with them last December. Felt awful and saw a Rheumatologist privately who put me back on 5mg with a 1mg reduction every 6 weeks
Hi Karendeena, I’m sorry I didn’t reply sooner, I have been on holiday for a few days. Unfortunately I can’t diagnose your symptoms. I have definitely developed weakness in my arms and legs and was on Pred almost 20 months and suffered terrible side affects but not everyone has this experience of side affects from Pred . I have included a link that might help. vasculitisfoundation.org/mc...
Best wishes
Liby
Yes remember now you have reminded me…..sorry to have to ask..
As HeronNS says could be something other than PMR…maybe.
As for doctors concerns of you being on “high” doses, goodness knows what they’d think about someone with GCA or long term PMR, but realise that doesn’t help you.
But if they so concerned then instead of pressuring you to rush your tapering perhaps they should be considering helping you do that by thinking about adding in a steroid sparer or biological such as Actemra.
Perhaps you might be able to try a slightly larger drop in dose - say 1mg if you used on of the slower tapering plans - see link - but if you can only manage 0,5mg a time, so be it - at least you are trying to reduce. Your doctors should understand that.
Try not to worry, many of us are told the same thing. I'm tapering by only 0.5mg per month.
PMRproAmbassador
No, not NO pain, the same level of pain as you achieve with the starting dose. Otherwise you would often never reduce.
But reducing the dose to get OFF pred is not the same as tapering which is to identify the lowest effective dose for YOU.
Your comment to cycli does make it sound as if it may not be PMR - is that why they want you to stop pred? Or is their fear of long term side effects of pred? You have struggled with reducing and need a high dose to manage the symptoms and the roaming pain is typical of one form of inflammatory arthritis - palindromic rheumatism. There are others on the forum who have been diagnosed with that after first being diagnosed with PMR.
If it is PMR, then there is no alternative for pain relief unless your medical system would approve Actemra/tocilizumab for PMR. However you have been on a high dose for PMR and your difficulty in reducing does support the question as to whether what you have is not PMR but an inflammatory arthritis that presented with polymyalgic symptoms. And they need to decide that.
Not sure what you mean by "No, not NO pain, the same level of pain as you achieve with the starting does"?? My question was do you reduce example...on 22 1/2 do I move to 22 when there is no pain???
And what I said was you can't guarantee NO pain - but your guide is the level of pain relief you had with the starting dose. If you had no pain there, then no pain is something you can hope for, especially at such a high dose for PMR. But there are other things that may return, due to other causes. Osteoarthritis for example or back problems due to muscle tightness. High doses of pred often help them too - but they are better dealt with separately, not with oral pred.
My Rheumatologist is just the same the jumps are to much for me and l keep going up to 20 which is a total nuisance as the side effects are not great are they. He told me last week to expect things to be tough especially as the steroids get down lower. And much worse when they get to 5 l have never had a reduction of 5 or 3 .
Does it never occur to them that there ARE other ways of approaching the taper besides like a bull in a china shop?
Nope!
Definition of madness - repeating the same action and expecting a different outcome ...
Things don’t NEED to be tough -what a crass thing to say -and doesn’t fill you with confidence in his experience and caring manner. It MAY be more difficult once the adrenals need to re waken, but until then if tapered sensibly it shouldn’t be that tough! If it is, he’s the one approaching it wrongly.
Saw him last week and he has introduced methotrexate!!!!! Haven't started it yet as l had such a major reaction to Leflunomide
Oh dear - well fingers crossed it’s okay if you do decide to take it..
Thank you
Mine has also told me to 'tough it out' and go down 1mg per fortnight to 0. Somehow think I might get a bit disobedient somewhere along the line!
I certainly would - because that is wrong on two counts: 2 weeks isn't long enough to know the PMR is in remission and even 1mg can be enough to manage the inflammation. And it is nowhere near slow enough to allow the adrenal function to keep up. He is setting you up for a fall.
I think his line is that TCZ will have my back. But I'm not sure PMR, or GCA, is in remission! It's very difficult to tell which of the woes is due to PMR, and which are indirect results, such as creaking tendons and muscles, and too much sitting, or just rheumatic changes that were masked by pred.
TCZ will probably have your back for the PMR/GCA. But it doesn't cover adrenal insufficiency - at this dose you have to go slow to get that in order.
After 2 years of pred, nearly all of it above 15mg, and some up to 60mg, I assume it'll be safe reducing by 1mg per 2 weeks down to 8mg at least?
Bonkers!!
As my reply to PMRPro. Feel somewhat dumped, but I suppose that at least gives me some freedom to do as I think.
Hi thereI don't post often too however I hear you. I too at high doses could not drop the 10%. I too at 25 mg had an extremely hard time and that was using the Dead Slow method.
For the next year I only dropped 1/2mg to 1 mg way less than 10% but it worked.
I'm now down to 3mg never had a flare but it's taken 5 years and actually at the lower doses I have no problems dropping. However I take several months to stabilize in-between. Not necessarily pain I can just feel my body isn't ready and my bloodwork shows that too.
Most of the comments seem to me say drop when you feel good and I agree but I always back that up with bloodwork testing my inflammation rates. Do you guys in Europe not have this privilege as we do in Canada?
Anyway just know someone else out there too had problems. I also had to split my dose from the 1st month.
Good luck
Think it depends on the doctor-some are hell bent to get their patients off the Pred -others are more sensible. But of course we rarely get posts about the sensible ones!
My doctors were very good on the tapering side of things and I never flared (had GCA) -but with another set of doctors things may have been different. Pot luck sometimes
Hi DorsetI can tell you my Dr is shit in many ways. For the 1st year I always took someone with me as a witness to her behavior and how she spoke.
I truly needed to educate her. I used her computer and downloaded the forms I use for tampering, copied the dead slow method. When Canada was about to legalize THC she asked me all about it knowing I was using it for sleep and CBD to stabilize me but she refused to put it in the file. She may now. It was on prescription by my GP prior to it being legalized. It has been a God send.
So many times you need to train your Dr. She now is pretty good but I sometimes have to push her for example now I'm in adrenal insufficiency and it's taken me 7mos for her to really listen to me and get me referred to a specialist.
I could get a referral to a specialist in my new city but it's taken me now 5 years in training here. I'm near the end I hope and it's better the devil I know so I'll travel to see her.
The only great thing the pandemic has done for me is my Dr's appointments for the past 2 years have been virtual. I love it.
All the best.
Makes you wonder why some people go into a “caring” profession 😳
You can have the blood tests - but for about a fifth of patients they aren't meaningful, mine don't change a lot and weren't high at the start. And other patients find their ESR/CRP don't go up if they are still on pred or lag behind as much as months.
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