I was diagnosed with hepatitis in 2019 I think and started on 40mg prednisolone have regular ultra scans of the liver and blood tests. Over the years have reduced to as little as 2.5mg pred and had to go back to 40mg as advised by the liver specialist after my eyes went yellow. I have liver cirrhosis now as there is scarring on the liver per the regular scans. I had reduced to 7mg pred by this time legs feeling heavy and general achy feeling when I was asked to reduce 1mg per month by this time I think I had developed some classic symptoms like pain in the buttocks legs feeling very heavy lower back pain so I asked if I can taper slow. Gastro said no it will be fine by the time I got to 2mgi had neck and shoulder pain going down my arm I could not get out of bed so I increased pred by 5mg to 7mg that didn't make much of a difference except the neck and shoulder pain was gone. I contacted gastro team and told them I had increased the pred but was still in a lot of pain. They said go to your GP for pain management but they increased the azathioprine from 25mg to 50mg. So I am taking 6 paracetamol which only makes a slight difference to the pain. I find walking more than a few hundred meters very painful. My doctor has prescribed co -codimol but that doesn't seem to be much better and causes constipation. I am now on a slow taper regime to 5.5mg but finding the pain so restrictive that my weight is going up and the only time I am not in pain is when I am in bed. My gastro team did increase the azathioprine I take to 50mg from 25mg but that has not made any difference to the pain. My GP was going to put me on a waiting list to see a rheumatologist but she said that depended on recent blood tests. My question is as I am already on pred will that not mask the fact that I have PMR. Any help in managing this difficult time of pain as I do know I have to go through this for my adrenal glads to start working or do you think as I may have PMR I should not try to reduce. Sorry for going on for ever but I am miserable with this pain and the way it has restricted any normal activities like housework gardening or just walking.
Lower back pain muscle ache on taper: I was... - PMRGCAuk
Lower back pain muscle ache on taper
I think it is fair to say that your description of your symptoms mean that PMR really does have to be part of the thinking about a differential diagnosis. How old are you? That may be relevant too - it is unusual in younger patients, late 40s, early 50s, is the low end of the age range.
PMR is always a clinical diagnosis - if you have symptoms while on pred then that means you aren't on ENOUGH pred to manage the inflammation. So it shouldn't pose too much of a problem in that sense - though some rheumies think that any pred is enough!!!! It isn't.
You say you have no pain in bed - do you have any problems then? Like, can you turn over in bed? Can you get out of bed without problems?
You need a diagnosis but PMR isn't out of the question. And yes, you have to get through the problems associated with a low dose of pred while waiting for the adrenal glands to wake up, and that can include aching muscles and joints. But it shouldn't be that bad and if it is - it needs looking at closely.
A higher dose of Pred will control PMR if that's what it is - and it does sound very PMR-ish. So reducing further is likely to make it worse. The usual starting dose is 15mg.
Not sure what the blood test will show as you are already on Pred, but as it isn't enough to control the inflammation [hence the pain] they might be useful.
As for your adrenals, don't worry about them for now, get your pain sorted first.
Thank you so much for replying so promptly I m at my wit's end with this pain. I am going to check with my gastro team if I can go on 15mg as I increased without checking with them the last time as I was out of the country. I was only carrying on the taper as I thought I have to go through this and eventually my body will adjust to the lower dose but I have been suffering with this now for a very long time thinking don't give up just ride through the pain but it's impossible. Blessings to you for replying and giving do much useful information to fellow sufferers.
I am ok turning in bed it's when I am on my feet the problem starts the ache is from lower back down to my feet with tingling in my feet achy calf muscles and painfully lower back after few minutes if walking or standing. And she it gets bad pain at my right hip going down to modern the outer side of my leg. I am 69 now and used to be fairly active person but that has all stopped now. Should I ask my GP if a thumb referral has been made and ask gastro team if I can increase the pred dose per DL s suggestion. Thank you again since joining I always read the posts and found so much info regarding pred tapering but didn't ask any questions as I didn't feel desperate enough.
The pain on the outside of the hip is possibly trochanteric bursitis - and that can be a symptom of PMR. I'm not sure about asking the gastro team - it isn't their field and a GP and/or rheumy needs to see you with symptoms. The lack of stiffness in bed doesn't fit though - and the low back and leg problems could suggest a spinal problem. I know it sounds harsh, but your GP needs to see you as you are.
Thank you for that insight I now have a few pointers to follow up.
From your replies it seems it may be PMR in which case I need at least 15mg pred. I really need diagnosis and for that even with the GP referral it may be some time before I am seen by a rheumatologist on the NHS So can you recommend a private one I live in the West Midlands but can travel to Surrey if I have to. In the meantime should I increase the pred to 15mg and carry on with the 6 paracetamol per day or leave the pred to 5.5mg and take the 6 paracetamol before my private rhumi appointment. I forgot to mention that I spoke to an out of hours GP a few weeks ago who said get your gastro team to increase the azathioprine to deal with the pain as it has far less side effects. But I thought the azathioprine was to suppress my immune system rather than deal with the inflammation.
Am I allowed to increase the pred without the gastro teams approval as they are the ones who put me on it to deal with the liver issues.
It may be a week or two before I am able to attend a private rheumatologist appointment as my husband has a couple of appointments to deal with heart attack issues. I think that's everything. Thank you in advance.
We'd always say Chertsey and Rod Hughes because we know he thinks out of the box. doesn't get hung up on age and we trust him. Not sure what West Midlands means to suggest someone closer if there were someone - not familiar with good PMR people in the B'ham area if you mean the official region.
Does the paracetamol actually DO anything useful? It doesn't for many.
Suppression of the immune system may reduce the amount of inflammation being created and some doctors think it potentiates the effect of pred - so in the longer term, may reduce the amount of pred required, But that is usually after any accumulated inflammation is cleared out first. As long as there is some of that, things can be tricky because it causes pain anyway. Azathioprine isn't normally used in PMR. doesn't have a record that says it works. Other DMARDs have been looked at. There is this touching faith that all DMARDs are equal. Unfortunately, they aren't! Sometimes they do work - but it is hit and miss, trial and error for most.
Thank you for the name of a good and trusted health professional. I can get to Chertsey it's not that big a problem. The paracetamol may be psychological but I think it takes the edge off the severest pain I suppose if I try to do without the paracetamol is the only way.
I forgot to address the pred question - I think you have to ask the GI team, they are in charge of it aren't they. And really, any doctor needs to see you with as little medicaion as possible for a clear view. It is sometimes a problem with when GPs initiate pred and refer to a rheumy - sometimes they insist you cut back the pred so they can see what's going on.
Ok great I should keep on low dose as it may mask any tests done but longer with pain I can do it. Thanks foryour help both of you. Sorry to take up so much of your time.
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