Hi everyone, thank you letting me join this forum.
I have been diagnosed with PMR in January this year and put onto 30mg steroids to help-which it ha. Doctor wants me off this dose and lower it taking into account not flaring again.since then I have been reduced from end of Jan to 25mg for a month in feb, and then would be wanting me to reduce by 1mg thereafter each month.
I saw doctor last week and said although not in pain ( before treatment I could not walk, dress myself nor get out of bath without help from hubby and was in agony), I seemed to have gone backwards on 25mg -said to keep on 25mg for another month then reduce by 1mg and revisit dosage. I have bad fatigue, aching, is this because of reduced steroids or starting a flare? Any help regarding best diet, hints would be appreciated. Many Thanks x
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Crwbin1
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When you say you have gone backwards what do you mean? Your status pre-pred is familiar to most of us - so how much difference did the 30mg pred make? What has happened now?
You are started on a dose that is more than you are likely to require to manage the inflammation and stay there for a while to clear out all the accumulated inflammation in the tissues. For some people that results in a miraculous removal of all pain and stiffness in a short time and then the aim is to taper the dose slowly to find the lowest effective dose, the lowest dose that gives the same result at any point as the starting dose did. In the first few months that is likely to be higher but for PMR it is usually possible to taper slowly to low teens at least within 6 months and later even lower. Your GP sounds sensible about it so a few questions need to be asked about what you have been doing - and possibly about the diagnosis.
Being on pred does NOT mean you can go straight back to your previous level of activity. You have a serious underlying autoimmune disorder which is attacking your body tissues and causing inflammation in them and the pred is only mopping up that inflammation - it has no effect on the actual disease process which continues in the background. attacking your muscles and other soft tissues and making you feel as if you have flu. You have to play your part in your recovery and that means pacing and resting - not rushing out and taking advantage of the false boost of energy that pred gives you to catch up on all the things you weren't able to do pre-pred. Are you guilty of that?
DorsetLady will be along with her welcome post - do read it all, including the links as what they contain is important.
In the meantime - please tell us what has happened.
Yes the initial dose of 30 ,and I was a super charged person and I felt like I did before even having my breast cancer. So yes, in answer to your question-thought that I could get back to life “as normal”.
Since decreasing,as said in my post, I don’t have pain as I did before the diagnosis but I do have the awful fatigue which feels like my body is in syrup and it’s draining to do anything plus everything aches.
The initial diagnoses was probably blurred as I was also stopping my cancer medication (as now in remission as of Jan this year after 5 years) and we thought the problems I was having was do with coming off those drugs -which in themselves have serious side effects. I already suffer with autoimmune under active thyroid (Hashis) so as you can see….bit of a problem.
So, I take your comment on board…pace myself .
So if the Pred stops the inflammation-what stops the disease? Or is this it and have to manage it life long? Again thank you for your help.
The fatigue is a component of the autoimmune part and obviously tends to be worst in the early days while it is still pretty active, it does improve some over time but fatigue remains something you have to manage by pacing. Pred can also have a dual effect - high doses can give this misleading euphoria which leads you to do far too much and causes exhaustion which can be hard to recover from. But pred itself can also cause fatigue and maybe your current dose is doing that because it is no longer enough to give the euphoria effect. Or maybe you are just in the recovery stage. Recovering from overdoing something when you have PMR isn't like it was before you had PMR.
How do you differentiate between "pain" and "everything aches"? That is an interesting one - when I ache all over like today, I tend to blame PMR. But maybe it isn't. I also have a lot of what is probably tendinitis - especially forearms woth gripping or twisting motions.
No, this isn't "It" - PMR will eventually go away for 95% of patients who have it. The underlying autoimmune disorder burns out on its own and you are in remission. Some doctors will try to tell you that it goes away in 2 years and if it doesn't, it isn't PMR. It goes away in a couple of years for maybe 1/3 to 1/2 of patients. Which means a majority of us have it for longer. A very few of us have it for many years, possibly life. But with care it need not be that limiting. I continued skiing for some years - it was other things that stopped me although I had to build up the amount I did slowly at the start of each season. But everyone is different and you need to get to know "your" PMR, what triggers it, what you can do and what you can't.
It is possible that your Hashis is causing more of the fatigue than you think. I know a couple of people with both who have found that their TSH levels are misleading - even with apparently OK levels, they do far better if managed as being a bit hypo. I know an ME expert in the NE of England managed his patients like that and there are many parallels between PMR and NE/CFS - if you ask patients that is!
As PMRpro’s comments, see this link- but 30mg is a high starting dose, and 25mg should still be adequate for PMR, so do wonder if that’s all it is…and ias you have a smallholding are you trying to still do all you did previously?
Hi , thank you for your reply. As mentioned to PMRpro earlier I did initially have a super charge and could go things I’ve not been able to do in years. Stopped all my pain -they were considering me for a hip replacement ! However, just reducing by 5mg feels like a switch has flipped the other way and have gone back to being very achy, terrible fatigue. And no get up and go, which has got up and gone!
Same question I asked PMRpro…is this lifelong disease? How best to manage it and any hints/tips would be appreciated. Many thanks
I forgot to say in my reply - have a wander through the FAQs. They do have a LOAD of information about living with PMR/GCA and pred. Then ask in a new thread if you have a more specific question. Just asking for generic advice means you will get a landslide of replies covering a load of things that don't interest you and little or none about YOUR specific problem.
Very unusual to be life long - as regarded as self limiting - but that can be anything between 2 to 6 years - normally about 3 or 4..
Have a read through link- gives basic information on management etc - and 5mg is a big step - would have been better to try 2.5mg - and some can only manage 1mg a time.
Plus you will learn - no matter how much you or your doctor wants you to reduce Pred, if your PMR is still active -IT decides how fast you can taper...
..and as PMRpro says better to ask a specific question - not generic . You can post as much as you like - but best to do one subject at a time, or the salient points may get lost.
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