Having re-read several discussions, do I understand that many have no, or little, pain when on pred? I have had continuous pain (except for perhaps a day or two) since being diagnosed, or slightly before, with PMR - over 3 years ago!! DOES it go away? Would love to hear "of course"!
Hi ,I've been on pred for over 18 months now ,and like you I still have lots of pain every day ,I have woke up this morning with with so much pain .....like you also I do get the occasion where I have a pain free day .i am seeing my rhumy next week so I have lots and lots of questions I need to ask him ,I do take ibuprofen to help with the pain ,I also bought a tens machine to see if that would help,unfortunately for me it didn't . Hope this helped a little x
Hi constance. It depends on what your dosage is. I was originally put on 15mg a day bu sill had pain so my doctor then raised it to 20mg. I finally ended up on 25mg before the pain went. Is your doctor sure it is PMR as part of my back pain was dealt with by my chiropractor.
A lot of people are pretty much pain-free on pred. If the patient still has much pain - karen I'm thinking of you here - then either the pred dose is not enough or you have something else going on too.
The Bristol group uses a "pred sandwich" as a criterion to diagnose atypical PMR patients. They give vit C for a week, 15mg pred for a week and vit C for a week again. There should be a global improvement in symptoms by at least 70% within a few days and then they should return to the original level in a similar time frame after stopping the pred. If there is not this dramatic improvement then the pred-responsive PMR diagnosis must be in some doubt and further investigation is required.
There has been some discussion on the forums about determination of pred dose - and it is slowly being suggested by experts that larger people need larger doses. That would be one answer to a lot of aspects of pred in PMR - why some people need higher doses, why some people find it so difficult to reduce and so on.
I had something else going on: myofascial pain syndrome which was causing spasmed muscles and referred pain (google it rather than me describing it again) and finally caused severe sacroiliacitis (inflamed sacroiliac joint in the pelvis). I was told by a research orthopaedic specialist that it is common alongside PMR, improves at the higher doses of pred but then resurfaces at lower doses. Once that had been sorted out using more targetted therapies I have achieved being almost pain-free in terms of PMR at a dose of 4mg. I tried 3, the bicep pain returned so I don't think the PMR has gone, it is being well-controlled.
Other things that can mimic PMR and are often found alongside PMR include piriformis syndrome and general muscle spasm in the back which can be due to a whole range of things - in my case I had this problem in addition because of a wisdom tooth that was affecting my bite and some of the upper back pain continued after the other bits were sorted. Tooth removed - back pain totally gone finally!
Karen - be VERY careful using ibuprofen. It, like all NSAIDs, can lead to gastric bleeding on its own, so can pred and in combination the risk is much higher. If your pain is helped with ibuprofen it does suggest it is someething other than PMR as ordinary painkillers rarely help with pure PMR pain.
Hi Constance, I am sorry to hear that you are in so much pain, because what you are describing isn't what I go through. What dosage of preds are you on because the whole point of them is to reduce the inflammation that in turn causes the pain. I'm not saying that you should be entirely pain free but your pain should be under control to the point that you can function ok. I get pain if I stress my self, clean the house to quickly, do lots of heaven gardening, or if I get a cold, etc then the pain surfaces for a couple of days until the extra stress calms down then in turn my PMR symptoms die down too. Don't do what Karen below does and take ibuprofen, ibuprofen and steroids do not mix well at all and my dr has told me to only take them if I really am suffering from pain and only for a very short time. Please go back to your Dr because they need to give you a proper consultation. Also wait for one if the regular experts to anewer your query and follow their advice. Get well soon.
I was put on 30 mgs (ESR 88). A short time later ESR 100. Hospitalised -
(urinary tract infection and e-coli), was then put on 60 mgs. They got me down to 30 mgs in two weeks. Gradual tapering but, six months later ESR up over 100, CRP sky high. Hospitalised again (some other infection). Repeated as above, 60 - 30. Again gradual tapering. Over the next two years I went down to 4mgs. Great, but still a lot of pain! Then, on Eileen's advise, upt the pred to 7 mgs. Then, practically overnight ESR and CPR "normal". Great, I thought, PMR over. Ha ha!
STILL in pain!
No - just because the ESR and CRP are normal it does NOT mean that the PMR is gone. It is being controlled by the pred - hence the need to have a high enough a dose to control the inflammation. At present there is no cure for PMR, all that can be done is manage the symptoms.
If the raised ESR/CRP were due to other causes then according to the experts the pred shouldn't really have been increased, especially to that level, unless they suspected GCA but that would require accompanying appropriate symptoms. Yo-yoing the pred dose often does make it more difficult to reduce at later stages
I like "clean the house, do heavy gardening". I have help in the house, we have moved into a place with no garden, don't need to clear snow in winter, etc. etc. Can walk (with help) for half an hour - I feel quite proud then! There's a saying somewhere "old age is not for the faint-hearted". Very apt!
I know! But I can't get it into my head!
Eileen I have learnt so much about PMR on this site ,far more than my DR and RHumy have ever told me ,I am disappointed that my Rhumy suggested I take ibuprofen when you should not take if on steriods ....I will suggest to him that may be I increase my dose of pred just a little by 1 mg ,then perhaps I won't be in so much pain all the while .i started on 20 mg 18 months ago and have reduced to 8 mg ,what do you think Elieen ? Many thanks for your help and patience x
It took me 4 years to get to 8mg - and I know quite a few others with similar stories. It isn't uncommon to find doctors, even rheumys, who are under the impression that you take the pred and reduce to zero in a couple of years or so (which you would be about on target for) without any problems. If the underlying autoimmune disorder that causes the PMR symptoms is still active you will need some pred to manage the symptoms, it is as simple as that. The odd dose of ibuprofen for a headache or a cold probably won't hurt, especially if you are also taking omeprazole or zantac as stomach protection (not that they always work either), but it really shouldn't be taken regularly alongside pred. One lady had a gastric bleed after 3 days of regular ibuprofen doses, not even on pred and any pharmacist will tell you not to take it if they know you are also taking pred. One lady was told by her GP to take paracetamol for pain that was left after taking pred, much to her distaste but he insisted it was totally safe - she developed raised liver markers after a few weeks and he panicked and sent her for a liver scan. Nothing wrong that stopping paracetamol wouldn't cure.
Yours is not the first rheumy I have heard of telling patients to use NSAIDs - I can only assume they haven't read the drug data sheets and have forgotten their pharmacology lectures.
A pharmacist says online:
"A review of package inserts and medical literature shows that the combined use of oral corticosteroids (such as prednisone) and non-steroidal anti-inflammatory drugs (NSAIDs, such as ibuprofen) may increase the risk for serious gastrointestinal side effects. These side effects include inflammation, bleeding, ulceration, and perforation. Each drug on its own has the potential for serious gastrointestinal side effects, and their use together may enhance these side effects. Patients should be advised to take the medications with food and to immediately report signs and symptoms of gastrointestinal problems or bleeding, such as severe abdominal pain, dizziness, lightheadedness, and the appearance of black, tarry stools, to their health care provider. For more information, please consult with your health care provider. Michelle McDermott, PharmD"
Before saying anything to the rheumy though, go and discuss this with your local pharmacist and see what their opinion is - if only because then you won't need to say to the rheumy "I read on the internet..." ! It tends to put their back up! None of us on here have medical degrees so it isn't really right for us to say do this, do that - but most of us have been told very firmly NOT to take NSAIDs and pred together.
At what dose were you still OK? And how do you reduce your dose? Do you go from every day at the higher dose to every day at the lower dose from one day to the next? That could also have been the reason now youa re below 10mg. The percentage drop is now over 10% for each 1mg - generally accepted to be too much at one go.
Hi Eileen. You suggested here weight could be an issue with PMR pain.
I weigh 62.8 kilos, 166 cms tall. Is this too much for a 75 year old do you think?
Absolutely NOT! That gives you a BMI (body mass index) of 22.7 which is in the middle of the correct range for all ages. Some people think that a BMI of a bit over 25 is ideal for people over 65.
I'm 155cm - it is in my dreams to be 63kg!!!!! I can't remember when I was last that weight - it is officially overweight but the currently suggested ideal weight for older people my height. Some years ago I weighed a slightly more than that and was told by a doctor and a dietician not to try to get significantly lower. As if I could! It wasn't for lack of trying.
Eileen, you mentioned your own problem with sacroiliacitis, and brought the attention to mine. I had been seeing an Orthopedic Physical Therapist for the pain, and she seems to understand the underlying PMR problem where the muscles tend to be knotted and painful in the right pelvic area, and she massages them. I am not sure if she uses the Bowen Therapy. I will ask her tomorrow when I will have another appointment. So far the twice weekly sessions have helped --- I am walking better, but the pain is still there, and I am still on 20 mg Prednisone. It will take some time. She ordered 3 easy exercises for the lower spine adjustment......what a struggle at my age.
I am hoping "pain free" is not an illusion....
There are Bowen therapists in the USA, sometimes it is called Bowtech apparently. There is also a fancier named therapy which is much the same "neurostructural integration technique" - which I'm sure is just an excuse to charge more! I know that there are physiotherapists who have trained in it and use it.
The sort of mobilisation your physical therapist is using is what I had to have here after "failing" the sledgehammer approach the hospital hoped to use. It did work but I also had cortisone shots though and "needling" which seemed to speed up the process.
Eileen, thanks - your input is always very appreciated. Wise counsel indeed.
I was like that 2 years ago constance - hate cleaning anyway so still don't do it unless pressed! The rest - in a flat with a west-facing balcony and on the edge of the Dolomites!!!!!!!!!!! Who needs a garden. Thank goodness for the fees, really don't begrudge a penny.
But the walking will get better if you can sort the other problems - I really don't think it is all PMR.
A young doctor said to me recently "You look like a young 70 year old, but you have the body of a 75 year old". I THINK he meant it as a complement!!!
I'd take it as such. Be grateful - he could have said it was the body of a 90 year old - which is what I felt like 2 years ago. At barely 60! Think I nearly feel like a 62 year old again now.
This is funny! But.....when turned 74 this year....I felt like that my body was falling apart....and now I feel 80!!!