Can someone describe what's meant by a "flare" please
Ive heard so often about flares if cortisone is reduced too swiftly. but how do I know if Im having a flare or just feeling awful? Ive no pain and never had, but am hideously weak . It takes 5 minutes to get down 38 stairs and going up is like lifting a grand piano from step to step.
Ive been told to reduce prednisolone by one daily mg every week, (this week on 5mg per day) . How lousy should I expect to feel on that?
Gentian: Curious how and why you were diagnosed. Pain was a major factor in my even seeking out a doctor. In my personal opinion you are decreasing your medicine way too quickly. I'm currently decreasing mine .5 mg a month. The doctor has let me choose how I want to do it since it's "my" body and I know how I feel. So, after trying to decrease in several ways, this is my choice for now. I consider a f
I think Linda is right, the symdrome is mainly pain. Mine is the tendon and soft tissue around the joints are imflamed and cause lots of pain and stiffness. And you should listen to your body, it will tell you how fast and how much you can reduce each time.
"Flare Up" is a term to discribe the pain suddenly came on like fire burns. But I don't know how serious it should be before we can say I have a flare up.
Hi Gentian, are you saying you did not have pain before you ever started pred or it disappeared when you did start it? How long have you been taking pred? Did you start at 15mg? Pred can make you feel weak. When you say you feel lousy do you feel as if you have flu or something else?
Hi, I may be wrong but I think you need to go for a blood test. They can get so much information from this and help you. If it all comes back ok then talk to your GP. Good wishes x
A flare is quite simply a return of the PMR symptoms after a period where you have NOT experienced them. It may be because of reducing too far so that the dose of pred is no longer enough to manage the level of inflammation due to the activity of the autoimmune disorder underlying it all. Or you may have remained at the same dose but the activity of the autoimmune part has increased and there is more inflammation. Or you might have managed to get off pred altogether at a time when the autoimmune part was quiescent and then it starts up again.
Like the others - I am somewhat surprised you were diagnosed as having PMR when you had no pain - it is usually one of the criteria. However, be that as it may - in response to your question "Ive been told to reduce prednisolone by one daily mg every week, (this week on 5mg per day) . How lousy should I expect to feel on that?" the answer I'd give is "Pretty lousy and your doctor is playing with fire".
Why did your doctor tell you to reduce at all? Has s/he decided it isn't PMR? And for goodness sake - why so fast?
At least two things are probably at play here. The first is that reducing at that rate is very very likely to lead to steroid withdrawal symptoms as the body is suddenly asked to adjust to a lower dose, if you remained at the new dose for a few weeks that feeling would improve and then you could start on the next step. However, you are then asking it to do it all over again before it knows where it is. Add to that that the recommended max reduction is not more than 10% of your current dose - 6 to 5mg is 16% and the percentage will be greater with each mg.
The second, probably more important, factor is that if you have been on pred for more than a few weeks, once you get below about 7 or 8mg your body has to start producing its own corticosteroid, cortisol, again. It doesn't just manage that perfectly overnight and in some people it takes longer than others. It is less the adrenal glands that make the stuff being able to do the job, it is the very complex feedback system that involves several glands (the hypothalamus, pituitary and adrenals, the HPA axis) and which swings about like a pendulum that has been disturbed until it gets to the right position again. Even if your body achieved it in a week - asking it to do it every week is far too much and I'm not surprised you feel lousy.
If your body doesn't have enough cortisol or other corticosteroid it cannot function properly - and you are possibly heading for what is called an Addisonian crisis if you continue reducing at this rate.. This leaflet is about that - you don't have the problem because your body is unable to produce cortisol and you have some available as you are still taking 5mg, nearly what you need for basic processes but it can't cope with more than that. You feel so lousy because your body is begging for you to slow down so it can cope. You aren't likely to develop a full-blown crisis as long as you don't reduce any further for the moment. However - do the symptoms sound like you?
https://patient.info/health/addisons-disease-leaflet
You really need to go back to the last dose at which you felt well - probably 7mg? Then you need to reduce MUCH more slowly, the rate recommended by most doctors from 10mg is 1mg per MONTH but we know that even that is too much from one day to the next for many patients and they suffer a lot of discomfort because of steroid withdrawal. Half a mg every 2 weeks is far better - and we recommend a "Dead slow and nearly stop" approach which spreads the 1mg change over a month so the body isn't having to adjust so quickly.
However, we aren't doctors and you'll have to get a doctor on side. It's the weekend - stop reducing now, see at least your GP as soon as possible and ask them to please rethink this approach. If you feel any worse than you do at present call the out of hours number and ask for advice.
Now we'll get to the blood test: ask your GP to arrange an adrenal function test, also known as a synacthen test. In case they argue you need to stop pred first, no you don't, it can be done while you are still taking pred, it just has to be interpreted differently. It will show if your adrenal glands are still able to function well enough - and that means you will get back to normal by reducing more slowly. There is always the chance that it isn't going to function however slowly you go about it and you will need to stay on a very low dose as a replacement instead and that must be discounted first before reducing any further. Endocrinologists have said they wish all patients who've been on pred for more than a couple of months were tested as it would save a lot of trouble.
Thank you all, I'm grateful for all your replies. It seems standard that every doctor I see thinks preds can and should be reduced way way faster than every pred-taker I come across, who urge Sloooow reduction.
My rheumatologist decided, as I never had pain, I dont have PMR but "unidentified myalgia". I look everything up and seemingly that means "pain in many/ all muscles" so should it be called "unidentified myasthenia" meaning (I understand) weakness in many/ all muscles? How can I know - surely he would be right???
Anyway Rheumo told me cortisone was weakening rather than helping me, and having other not good effects, so I should reduce preds "as fast as possible" reccommending 1 daily mg reduction each week, and find a balance between no preds and enough preds for tolerable life-style. Folks - there isnt one!
I'd like to find another diagnosis. Internet browsing suggests myasthenia gravis, motor neurone, numerous other scary options, none with a "cure" but at least I'd have a name and friends wdnt sigh and write me off as "enjoying poor health" !
P.S. to my note above.
Eileen I will make a note of v helpful reduction rate you quote -
" the recommended max reduction is not more than 10% of your current dose - "
but is that 10% per day, per week or per month? I assume per WEEK, which would mean 5mg daily this week would lead to 4.5 mg each day next week. alternate days taking 4 and 5 mg . Or slower you suggest.
Maths not my strong point normally. Right now could be my strongest.
In the first post in this thread
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find links to much information about PMR which are likely to help you decide whether what you had originally was really PMR. In the replies part you will find the description of the dead slow reduction plan many people are using - but they are people with PMR who are looking very carefully for the lowest dose they can find which manages their symptoms.
The reason for the 10% is to try to avoid the unpleasant sequalae of a reduction in the dose of pred for whatever reason you are taking it - they often take the form of the same symptoms you were taking it for so for people with PMR they don't know if it is a flare or the pred reduction causing the problems. Eliminate one of the options as far as possible and the other remains as the likely answer. The 10% is for any single reduction - but most people would then wait at least 2 weeks before trying the next drop.
You haven't at any point said how long at at what dose you were on pred and that is important. If you have only been on 15mg for a month or so then the reduction he suggested isn't entirely unreasonable - but it doesn't sound as if that is the case. Your very fast reduction is not allowing your body to catch up with its own production and so you feel desperately tired and weak. Half a mg per week would probably leave you feeling better - but I feel you need to stick at your current dose for a few weeks now to catch up. 5mg is a low dose, you won't be crumbling in a heap as a result. A lot of rheumies seem to have this fear that "pred weakens you" - not necessarily at all so there is no desperate rush to get off and certainly not such a need that you make yourself ill in doing so.
" find a balance between no preds and enough preds for tolerable life-style" - what a strange instruction. Either you have an illness where you need pred or you don't. However - I'd say at the moment you have exceeded that instruction since you say you feel lousy. Did you feel better at a higher dose? When did you start feeling so lousy? That is - at the moment - the important question.
And while you are reducing you do need to take it easy - your body won't deal well with any form of stress, emotional or physical.
Hi Gentian,
If you feel lousy on 5mg, why would you still wants to decrease it. I would go back to the level that I feel o.k. like may be 6 or 7mg. Appropriate exercises is very important to rebuild the strength of the muscle. You can find help from the Re-hab clinic. Leak of trace minerals and calcium can also lead to muscle fatigue. Natural Path Clinic may be the best place to find out if your are leak of any vitamin or minerals.
Eileen as you know the doctor at Chapel Allerton wants me to reduce by 1mg instead of .5mg.
I had been fine doing the decreasing at .5mg, at the moment i am reducing from 9mg to 8.5mg but when i went from 9mg to 8mg i was having pains more, and my feet are so bad i have gone back to reducing by .5mg.
So far i have another twelve days to go to complete the dsns method to reach a full 8.5mg, but now i wonder should i reduce from 8.5mg to 7.5mg or keep at 8.5 to 8mg.
I know the doctor has said she does not think i have PMR, and wants me to reduce the pred to see what happens, but i dont want to do it too quickly, am i doing the right thing, my own doctor has said its up to me as i am the one who knows my own body.
It really surprises me that you were diagnosed with PMR when you had no pain, as you say myalgia means muscle pain, while myasthenia means muscle weakness which is what you are saying you have. It almost seems that your rheumy was muddling up the two. Myasthenia gravis tends to start with droopy eyelids and also double vision as the muscles in the face weaken. A friend of mine has it and it is horrendous. He is on pred too which works pretty well for him. He us on 7.5mg a day at the moment. Do you have any facial problems?
My mother had ME, Chronic Fatigue Syndrome, and she was exhausted doing things like you say you are. I think you need to have a medical professional rechecking your symptoms. It does not sound that pred is really doing much for you. If you have been taking pred for a while though you cannot just stop taking it, but need to be weaned off it.
Do you still feel bad when doing the DSNS reduction using 1mg? I manage it but for the first 3 days I try the new dose I feel "peculiar" then it settles again. Of course it is far easier to go from one whole mg to another whole mg as you don't have to cut the tablets.
Though if doing it 1mg at a time means you can barely walk and doing it 0.5mg means you can walk there doesn't seem much competition to me! I had foot pain with PMR that made even walking across the room awful!
the pain in my feet are still the same if i reduce by 1mg or .5mg, i checked my diary and the pain started well after the lower dose, so maybe its worth persevering a bit longer and see what happens we are on holiday at the moment, but i cannot walk far this time, i also had this at 10mg looking further in my diary , and it went at 9mg .
A flare is when u have dropped down your dosage and suffering some of the symptoms that you had in the beginning. Even if you don't recognise these you should speak to a medical person who could make that decision. Don't suffer this and worry on your own, seek medical advice and be reassured Hun x