Diagnosed in 2015 and put on 20mg of Pred. Last year moved to Scotland where Rheumatologists do not deal with PMR they leave it to GP. I have lowered my dose of Pred to 4.5 . Since last Xmas I have been suffering with a trapped nerve in my back giving me pain in my left thigh like sciatica. The Dr sent me to physio who is giving me exercises to strengthen my hip flexor muscles weakened by taking pred.He also prescribed co-dydramol, Gabapentin and Lydocaine pain patches for the pain in left thigh. I am not getting any pain in my right leg and am wondering if my PMR has given up and gone or whether the medication I am on would hide it. I have been feeling very tired for the past few weeks and wonder if I should ask my Dr to check if my adrenals have woken up after nine years. Any advice would be appreciated. Thanks.
Has my PMR gone?: Diagnosed in 2015 and put on 20mg... - PMRGCAuk
Has my PMR gone?
"Last year moved to Scotland where Rheumatologists do not deal with PMR they leave it to GP"
That is not entirely true - some patients in Scotland DO get to be managed by a rheumatologist who oversees their case. This is the case where the GP isn't successfully managing the symptoms or there are any atypical aspects to the case or streroid sparers are felt to be necessary. However - a good GP is far preferable to a poor rheumy.
The simple answer here though is that the medications you list don't have any effect on PMR. However, 4.5mg pred is loads to be managing PMR inflammation so you really can't assume it has gone. 4,5mg is also plenty to be suppressing production of cortisol by the adrenal glands and it is unlikely that a synacthen test will show anything positive as yet. Your GP could do a basal cortisol - cortisol measured on a blood sample taken at between 9am and 1pm and that will give a rough idea of whether they are performing at all and if so, at what sort of level and whether there is any point in arranging a synacthen test.
Many thanks for your reply. I will ask about a basal cortisol and see what the result is.
How can the basal cortisol test provide info given that one is on prednisone? My GP indicated that I had to be 100% off before this would provide any reliable information, Would love if she were wrong on this, as I fear my adrenals have completely shut down after 3+ years.
See this link - it explains what happens to adrenals when on steroids -and when they start working again. That should occur hopefully on lower doses
Test will tell if capable of working-but not how well.. so in that instance it’s useful
healthunlocked.com/pmrgcauk...
Think your GP fell sleep during relevant lecture 😊
Think he did! Just like my adrenals, had Basal cortisol test, got result yesterday it was 156….not too good, but I have finally lowered to 4.5 mg ….and feeling like you know what!…..will stay a couple of months at that then hopefully get lower.
Experts CAN extrapolate but prednisone doesn't interfere with the test providing you hadn't taken any in the 24 hours prior to the blood being taken, longer is preferable but that is riskiy with some patients when you aren't sure about adrenal function. No-one claims they are reliable but they do show if your adrenals are doing anything at the time. The synacthen test does it perhaps better but requires an expensive hospital appointment and still only really shows if they CAN produce cortisol, not if they are doing it reliably.
And frankly - it is a bit late to find out that they can't do anything when the dose has been reduced to zero!
In phone call today my son asked what my latest cortisol test result was. When I said 158 he said what would they do it an ACTH test never showed a good enough result even when on vey low or no steroids…..Not sure I said….steroids??
You wait patiently with safety measures in place just in case - and if it really never improves - yes, steroids ...
Thank you....I am waiting for that day when I am one of t hose people that say I now feel a bit more like me.....fingers crossed....Hope Scotland isn't as cold as here in Norfolk!!
B£^^$y freeezing ... Yesterday was lovely though!
Yes, blink and it changes, forecast tomorrow for something called sun!
Tomorrow here is suggested to be about 20C!!!
Yes same here. Right now sitting with blanket so cold indoors! Hardly been in the summerhouse this year, not warm enough.
Me too!!!!!
Have just sneaked central heating on for 1 hour OH watching 1966 World Cup repeat in the other room so may not notice!
Dear lord - I remember that first time round, listened on the radio. But I doubt it will help tomorrow night!!!!
It was unbelievable to how different they play now, no tricks, more respect for each other, and the crowd just sitting enjoying it…..shame. 2000 will be in a very large tent in a park not too far away, so no early night for me tomorrow night! Everything staying open much later….. why?
I am in England and looked after by my GP, never seen a rheumatologist in my 7 years and now on 3.5mg
75% of people with PMR never see a rheumatologist. In my case my GP was not interested either!!!
I have a good GP and have tried 3 different rheumatologists who were a complete waste of money. The comment about a good GP being better than a poor rheumatologist is spot on!! We are on a very similar trajectory, Jane; I am in my 8th year now and on 4mgs. I have Shingles ATM and when that is over, PMR will seem like a walk in the park!!!
I’m in Scotland and have been managed by Rheumatologists almost from the outset. Ask to be referred. It may take a wee while but I’m sure you would be seen. I’m in the Forth Valley area. But as PMRPro says if you have a good GP that’s better than a poor rheumatologist. I’ve been lucky and had good support and referral for dexascans from them and understand around slow tapering of prednisolone. I wish you well 😊
Thanks Janet,When we first moved to Argyll and Bute I asked to be referred to a Rheumatologist, the Dr did refer me but got the reply that they didn't deal with PMR and it was up to the Dr. There are several Drs in my practice and I never get to see the same one twice
Hi Marcy47, I am in much the same boat, having like you trapped a nerve in my hip back in January which is not improving and at 3.5/4mg pred feel like the PMR itself has faded leaving mostly fatigue and general malaise.
Recent blood tests confirm a lowish cortisol activity (246) and I have been offered a synacthen test which evidently can be done below 5mg. The rheumatologist was very dismissive about PMR after seven years and I have continued a very slow taper since I saw him last year. I feel like I am getting somewhere but the hip pain has definitely made the past six months very difficult and I am cautious about adding strong meds into the mix. So I am hoping to get some benefit from physiotherapy, is it working for you?
Hi Zebedee, I am finding the exercises very painful, not helping much. I now have pain patches to wear during the day so it is a bit easier to do them. I wanted to try a Chiropractor as I had a problem with my SI joint a few years ago, but have been warned off that idea by Dr and Physio!
I honestly thought mine was sciatica and did the appropriate exercises for months while the pain moved into my buttock and back of my lower leg. I never know which discipline is the best for such things, osteopath, chiropractor, or physio. And having had increasing doses of gabapentin, pregabalin and fentanyl prior to correct diagnosis of PMR I am loath to go back so my GP agreed I could stick to paracetamol. A recent X-ray showed impingement of my hip but the Physiotherapist that assessed me dismissed that. With the pain now also on the outside of my right hip I’m not sure I agree with him but hoping the physio who eventually treats me can cast some light and take away some of the pain. Your reply does not fill me with confidence I’m afraid.
Sciatica is a symptom - irritation of the sciatic nerve causing pain. There are several potential causes from dodgy discs to muscle tightness and each has a slightly different solution. It infuriates me when it is presented as having a single cause.
Maybe surgery is indicated for impingement? Maybe consult a good orthopedic surgeon?
Sadly I was referred to The Musculoskeletal team which covers multiple disciplines and was seen by a physiotherapist, I don’t know if I can ask for a second opinion from another member of the team but will do if the physio sessions don’t improve the situation.
The idea of the MSK team is to start with the physio, and then if that doesn’t work to be referred the appropriate inter departmental section. Whether that works in all cases couldn’t say, but it did for my arthritic knee which resulted in replacement surgery.
Thankyou, that’s helpful to know. I rather suspect it won’t be resolved with physiotherapy but didn’t know it was a stepping stone to other departments.
Fingers crossed - life becomes a bit of a naus at times doesnt it? But still better than the other option 😏
For me this whole year has certainly been “a bit of a naus”, and far from the onward and upward approach I started the year with. For upward read downward in terms of pred dose, which I have somehow persevered with ( round of applause please) but finding a pituitary tumour, hip impingement and now low haemoglobin have all been hugely unwelcome and tiresome!
After trying numerous therapies to avoid surgery, I found an excellent orthopedic group and was diagnosed with inadequate acetabular roof, something I was born with (but did not know it). You may need another opinion as to whether there is impingement shown on X-ray. Surgery gave me a new life (though I was scared to have it). You know you and I can't blame you for wanting to avoid surgery if possible. I hope physio works for impingement, or whatever the diagnosis is. My surgery was successful because several orthopedists had input about how to treat my problem. Most likely, there are different opinions as to how to treat impingement
Thankyou, my lovely GP had already suggested a surgical approach and I was quite prepared for the musculoskeletal team to propose it. This year has thrown up other complex health issues which have come to light through scans and X-rays so I have quite a lot to deal with at the moment. If physiotherapy can relieve the pain for the time being I will be quite happy to not go under the knife but personally I think that lies ahead.
I kept being told my excruciating back pains were muscular or sciatica but when I eventually got x-rays I had 4 vertebral fractures, so if I were you I'd insist on x-rays particularly because of the danger of osteoporosis with long term steroids
I have had X-rays done recently, all they showed was wear and tear in my lumbar spine. Nothing wrong with my hip joint either.
Phew, that's excellent news, keeeeeep dancing!
I have a burning pain daily in my left thigh like sciatica, and had what felt like someone’s fist in my lower back since January. MRI scan showed no trapped nerve so they think I could have sensitive nerve endings in my lower back, I’ve had acupuncture for 2 months now and the back pain is now only felt if I lift something heavy it’s not constant anymore, I’m waiting on physio for over 2 months now to see if exercises can help get rid of the pain once and for all. Just got down to 7.5 mg of pred but had a cold and a flare so added another 5mg for a week, have reduced to 8mg today and will stay on that for a month to see if things settle. I was diagnosed in Dec and have only ever seen a doctor. It’s a slow lonely old ride at times, but I’m still working and generally feel so much better, I’ve taking the advise here go slow.
Hi, do you have Meralgia Paraesthetica? If so, I sympathise. I’ve had it following a caesarean 21 years ago. The meds you mention are unlikely to be helping any PMR you have knocking around. X
I was on Pred for 5 years (albeit on a low dose) for PMR. After a long while, I eventually saw another Rheumatologist who determined that the PMR had long gone and I was actually suffering similar symptoms in my shoulders which was due to calcification, tendonitis of the shoulder joints (proved by x-rays).Stopped the Pred. Since had Ultra sound guided injections with cortisone which have been very effective. One thing that being on Pred for a long while can cause is 'steroid induced myopathy'... this has led to weakening of muscles (thigh and calfs)...so need to build them back up with exercise. Hope this is useful.
No one tells you that taking steroids long term can lead to weakening of muscles, in my case hip flexor muscles. Mine has got so bad that I can't put my full weight on my left leg or my hip juts out, I have to use a walking stick. I'm getting physio exercises now to help build them up but I think it's going to take a while.
It is listed a side effect in the Patient Information Leaflet …
sorry half my message disappeared!!
I have seen a rheumatologist from the start and he liases with my gp- but I think we are fortunate in Edinburgh with 2 teaching hospitals - you are living in a lovely part of Scotland - have you connected with the Scottish branch of this forum??
Are you actually in Lothian? I will eventually be moving to near Dunfermline but will try to stay where I am in Italy as long as possible as my medical care there is so much better than the poor old NHS!
Yes I am in Edinburgh and I am very happy with the NHS here - maybe been lucky - excellent GP practice and I have had very good attention from the rheumatology department - was on TCZ for 2 years and am now back on it. Also still got an excellent NHS dentist who’s lecturing me on how to look after my teeth (what’s left of them !!) At 81 maybe rather late??
You are near enough to Edinburgh in Dunfermline- you could be referred to te Western General??
I am wondering that.
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