I was diagnosed in December with PMR, was put on 15mg of Predosline then told to drop to 10mg after 5 weeks. My symptoms returned and I went up to 20 to try and clear the flare up. I went back down to 15 mg and now at 14 mg, which I’ll stay on for another 2 weeks. My doctor wants me to drop every few weeks. However I’ve got a constant pain in my back which is affecting my left arm, I have a feeling of a dead dull arm and pain in my left bum. I was sent for an X-ray which showed the following.
Findings: There is mild loss of height anteriorly of T7 in keeping with wedge fracture. The pain in my back, left are and leg is constantly there even with the steroids. My other aches are still showing up due to the PMR.
I’m still working 30 hours a week and it’s a physical job, so don’t know how long I can keep going as I’m exhausted all the time. Can anyone give any advise on PIP is that something we can claim, I’ve never claimed anything before so not sure where to start.
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Waverley63
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Sorry to say, don’t think you doctor has much idea of PMR - initial reduction may well be okay for some illnesses that they usually deal with not with PMR.
Plus dropping every couple of weeks, it’s too fast. Not long enough to know that current dose is sufficient before you step down.
Would say back pain is not necessarily associated with PMR -so won’t be helped by Pred - and that just adds to your overall problems.
Have a look at this re PIP - from CAB - perhaps worth contacting them -
There are a few on here who have claimed benefits - and perhaps if you amend your post title to include something like “information on PIP or benefits I can claim” you might get related posts up.
You do need to discuss the situation with your employers, occupational health, HR etc and union rep if you have one…
Edit -
This information was in the older version of the FAQs so some maybe out of date, but worth a look through
have you tried painkillers to help the pain? If so did they work? It does sound as if your doctor is rather over enthusiastic on the size and frequency of your steroid reductions.
Hi Piglette, yes my doctor wants me to come down every 2 weeks by 1mg but I can’t at the moment. I take Codeine at night so I can get some sleep, my back keeps me awake at night.
The trouble is if you reduce by 1mg every two weeks you do not have time to see if the new dose is working or not for you, as it takes around two weeks to complain it is not enough, you really need four weeks. I do wish doctors would realise they need to spend time finding out about how drugs work.
I know, I told the doctor I’m taking the advise on here and staying on 14 mg for a month to see if my symptoms stable, I won’t keep reducing if it makes the symptoms r worse.
I think this is a rather complex problem and the potential spinal fracture may well have a lot to do with the back pain. You also need to be referred to the MSK people who with a bit of luck might be more help than your GP. I suspect you might be better with a higher rather than lower dose of pred at first. Not sure who to suggest should have a look at your back muscles but the fact there is a lot of discomfort on the left side suggests to me there is something going on there.
Yes I agree as even though I take the steroids the pain on one side is still there, I will as to be referred (who are the MSK) people. It definetly gets you down, when you go from healthy to full of pain overnight.
Hi Waverley 63, I was referred to Musculoskeletal last September, who then sent me for a dexa scan which confirmed the osteoporosis. I have fractures in both thorax, (T6 and7) and lumbar regions. I haven't had any falls but was told the fractures can be caused by something as simple as coughing or sneezing.
I use a Voltarol gel now to ease the pain. I can't take oral Ibuprofen as I have asthma. I was put on codeine initially but that resulted in chronic constipation, also Longtec which is morphine based. One consultant advised me to stick with paracetamol rather than codeine because of the side effects.
The website gov.uk has information about claiming PIP and eligibility etc. I think there was a disability phone helpline which my daughter used when filling in PIP form she has fibromyalgia. Is there a Welfare Rights Officer in your area - they may be able to help?
I think sewinggranny's remark about a dexa to confirm osteoporosis in your spine is wise. You are young and only on steroids a short time ( you may have had other risk factors for osteoporosis pre PMR).
Sorty, I answered your 2nd message & it didn’t mention back trouble in the post. If your back causes you to be disabled, meaning you can’t dress yourself, go to toilet unaided, feed yourself etc, then try for PIP. It’s on a point system…if you can’t feed yourself you get a point or two, depending how bad it is, you get points if you can’t go to the toilet unaided…you get the drift!! It’s a good disability benefit if you have a permanent disability which is unlikely to change! It also asks about mobility, which may be impaired if you have back issues?!
Just have a look through the PIP questionnaire online & you’ll will see what it’s like. But do go & try & find something to boost your income as you may need time off, or go part time some time. I struggled for many years with fibromyalgia, osteoarthritis, then had bad gynae issues, & an early hysterectomy. I changed to a less demanding job & parttime, but it meant less more money coming in. I loved my job, but regularly travelled round Europe & quite often to the USA. Keep fighting. I found it rewarding, & still fight to do as much as I can! S x
When I first started getting the PMR, I'd also tweaked an old back injury at the gym. My usual cure for it is acupuncture, so I was getting more mobility after a few treatments of that, but the rest of my body was getting pain and stiffness, which was obviously in hindsight, the PMR kicking in. The Acupuncturist is also a herbalist and was getting me moving with other treatments like cupping and heat lamp and I'd feel good but it wouldn't last long. That was when I gave up on the herbs and went for another blood test from which my GP diagnosed the PMR.
After that diagnosis, I went onto Pred 15 mg and had almost immediate effects after a few days, that got increasingly better over 2 weeks. I still believe that I had let myself go over the Covid period and had not noticed how run down I had become. Overweight, approaching type 2 diabetes, even a short walk hurt my hips and constantly tired.
I still see the acupuncture as sorting out my back & sciatica as usual. (Its an old ligament damage from being a small rugby prop forward) It must have been my general condition that brought on the PMR. That has made me change my lifestyle and diet completely and am gradually now tapering on 12.5mg Pred now probably down to 10mg later this week.
In response to your post on the other pain, it sounds similar. Other sh.t happens also. I guess you just have to listen to your body and fight this with a variety of remedies based around the Pred.
"It must have been my general condition that brought on the PMR"
Not necessarily at all - we have competitive level athletes who developed PMR. Being unfit doesn't mean you will get PMR, it is an immune system malfunction.
I would echo what pmrpro says, I was still doing high altitude treks when my PMR started and regular hill walking in the UK, so I was pretty fit and no more than a few pounds overweight. I really do not believe that my physical condition was the initial cause of my PMR. Unfortunately, my relative youth and my fitness levels are probably responsible for not getting a diagnosis for several years and so I had to try and self treat the best I could. In some ways, I think if you hobble into the surgery, it goes in your favour, as they are more likely to take it seriously. I blame my PMR on years of unmanageable levels of work stress, but the role of the pandemic does chime for me. I think it was instrumental in pushing me over the edge, as all my support systems were withdrawn and I was unable to do the weight training and swimming that had been keeping me strong. I've never managed to get back my previous level of fitness and good health. Everything that I have tried to do since then has been thwarted by this bloody illness, one way or another.
In a way it's good to know that it can happen anytime! But I'll still believe I can fight it better by increasing my cardio & stamina and changing my lifestyle to less carbs and losing more weight.
I do think that those things can mitigate the symptoms. And even if it didn't, better physical condition is better for you overall. Last week, my doctor was certainly keen for me to get back to weight training as soon as I feel able. It did help in the past, but I am going through a bit of a relapse atm, due to tapering too far, and I am struggling to re-equilibrate. The big challenges for fitness with PMR is getting the exercise levels right, so that you don't overdo it and make yourself worse. Plus, you need more recovery time than when you are well. And the other thing of course, being on pred makes weight loss extra hard.
I don't know about claiming benefits, but I do feel for you, as I also had to give up work because of my PMR. I got a bit of a pay out from the company when I left and managed to access one of my workplace pensions early and had some savings, which I have survived on, until now. I get my state and other pensions in August. I was working full time in an office environment, so I didn't have quite the same physical challenges as you, but the work environment was very high pressured. Towards the end and during the pandemic, I was working from home, so I managed to grab unnoticed a couple of hours sleep in the middle of the day, but eventually, even that was not sufficient. I think the systemic effects of this illness is greatly overlooked. Apart from the pain aspect, the extreme fatigue and overall malaise are very real for many of us and it is exhausting. You might find that you need to go long term sick first before you can access benefits, but that may also prompt your employers to offer a payout, which would help your financial situation. I really hope that you find a solution soon, so that you are able to get the rest that you so desperately need for your recovery.
Thanks Gimmie, I think for me it’s the reality that it’s a long process to get it Uber control and better, I never heard of PMR or has anyone I know before I got it. I’m going to learn to take it slowly and try and not let it stress me as well. Listen to my body.
Same here. I hadn't heard of it. All I knew was that there was something really wrong with my body. You do have to learn to pace yourself, which I find a lot easier since I retired. Not quite the retirement that I had expected and I didn't expect to become so disabled at such a young age. But there you go, I'm still alive and kicking, which has to be a good thing.
I'm currently on prednisone alone and doing the reduction process for PMR. I was at 15mg daily had a flare with neck and upper leg pains when tried going to 10 mg New Rheumatologist I'm now seeing agrees eith slower reduction. Wants me to 1 mg a month instead 1 mg every 5 weeks like the reduction schedule showed. I'm doing this but with the twist of a half mgevery 2 weeks. I'm currently at 11 mg daily and plan to start 10.5 mg March 15. So far do good. You definitely can't go to fast. Think turtle, not hare
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Stuck on 13 mg for 4 months, not sure what to do
Tingling hands, arm and leg occurrence at 5 mg slow tapering, in my 3rd year since PMR diagnosis.
is it back again?
Suspected flare - ? When to up the steroids
