advice please
Posted , 13 users are following.
Hi
After years of pain I was diagnosed with fibromyalgia a few years ago, gp kept putting my all over including chest pain down to this when in turns out I had severe angina and a heart bypass in Dec 2016. following this I was referred to a rheumatologist who diagnosed PMR, and put me on prednisolone, which have helped I have got down to 5mg, However can I ask people to they still get pain, I have pain still in my top back, my chest and arms, obviously with the heart problems I worry with the chest pain, but its better than before I used to take the pred but still have pain, I have an apt to see my cardiologist next week but just wondered if any one else still gets pain with the pred. I have also put on around a stone in weight since taking this and find that very hard to shift also.
Many thanks for the time to read this.
xx
1 like, 12 replies
Twopies lindsey65522
Posted
lindsey65522 Twopies
Posted
daniel08939 lindsey65522
Posted
carlene22578 daniel08939
Posted
sandy08116 daniel08939
Posted
amkoffee lindsey65522
Posted
You might have fibromyalgia as well as PMR. I've known a lot of people in my PMR group on Facebook and other places that have both conditions. So I don't think it's even a very unusual situation to suffer from both diseases.
Kassiebeetle lindsey65522
Posted
lindsey65522 Kassiebeetle
Posted
HI
I started on 20mg and was told to reduce 1mg per month, but I have stayed at 5mg for a while, I don't want to increase again as I am finding the gaining of weight an issue
MR._BELLA lindsey65522
Posted
EileenH lindsey65522
Posted
You will stand a chance of losing the weight if you cut carbs drastically - it has worked for a lot of us, I lost over 35lbs of PMR and pred-associated weight and have kept it off - as long as I don't eat more than a minimum of carbs. No cakes, bread, rice, pasta etc etc and very restricted root veggies or fruit. Both have high carb levels and are enough to prevent me losing weight. It is to do with pred changing the way our bodies process carbohydrate. It really is worth trying.
The level of pain relief you achieved with your starting dose is your guide - if the pain increases as you reduce then you have gone too low. Some people are nearly pain-free, others are not. Not all the left-over pain is PMR though - myofascial pain syndrome and piriformis syndrome are both more common in people with PMR and as someone has already said - you can have fibromyalgia too. The pain that goes with pred will be PMR and other muscle-related things.
I get returning pain that isn't directly PMR, it is due to myofascial pain syndrome and it mainly affects my lower back, shoulders and neck. Some of it will go away with a slightly higher dose of pred. There are lots of discussions about it on the forum. MPS causes tight/spasmed muscles and can irritate nearby nerves which then cause referred pain. It causes 3 pairs of trigger points to form on either side of the spine, in the shoulders, about rib level and in the low back where the babies dimples are. The rib level pair can irritate the nerve supply to the ribs and that can lead to chest pain.
Reeceregan EileenH
Posted
I’ve never been pain free on pred, it’s just the level of pain that changes. How do you tell whether the recurring pain is from reducing pred too fast/too low, myofascial pain syndrome, piriformis syndrome or a relapse? I’ve managed to get from 50mg to 25, but from then on each milligram drop has not been pain free and now that I’m down to 11mg I’m experiencing quite a lot of pain in all the areas you mention could be myofacial and piriformis pain or coming from my bulging back discs acting up agai, plus my frozen shoulders never entirely went away. So far I haven’t found any pain relief that takes it away, ( have tried over the counter meds, Bowen therapy, massage therapists, back strengthening excercises, etc) and yesterday decided to increase a few mgs to see if that helped. I bumped it up to 13 but nothing. I have to have a tooth out tomorrow and dr wants me to take 25mg today and tomorrow just in case, then drop back to my 11mg but I’m really struggling with pain at that dosage.
EileenH Reeceregan
Posted
It is surprisingly common to still have some pain - whatever doctors think and tell people. Discs are likley to cause back muscle problems. If they are confident it is PMR rather than anything else causing the symptoms then it sounds as if you are a person who just needs more pred because you don't absorb a lot. As I keep saying, the bioavailabilty ranges from 50-90% - your 11mg may be a lot less effectively than my 11mg.