PMR assistance
Posted , 9 users are following.
Hi, I am based in Australia (Melbourne). I am 52 years old & diagnosed with PMR almost 5 months ago. Unfortunately due to other chronic medical conditions, being on Prednisolone long term is not an option for me (any side effect that can happen, did). It has affected my diet controlled diabetes to the point of being on medication. I recently had a nasty chest infection & after 3 course of antibiotics, during which time, my PMR pain was somewhat better, have found that the PMR pain is worse again. We are currently in winter here & it has been colder of late. A friend suggested acupuncture but after reading one of the forums, it doesn't seem like there is any substantial evidence to back it up. Without sounding too whoa's me about it all, I really am getting to the end of my rope, my immune system is shot so this chest infection won't quite go, I've had laryngitis for almost 4 weeks, my skin is weakened & splits easily with heat rash from hot sweats & I've got thrush from the antibiotics. I am trying to learn as much as I can & looking for any & all advice on things that have worked for other sufferers. Fatigue & insomnia also play a large part in my ability to cope with day to day.
I know the root cause of raised CRP & ESR is an infection - my rheumatologist has not been able to answer me satisfactorily though... why can't they locate the infection, why can't they treat the infection & what wouldn't antibiotics work for it?
My apologies for the length & also the despondant nature of this thread, I am just looking to find answers & help so would appreciate any advice on alternative therapies, other ways of coping, etc.
Thank you, K
1 like, 9 replies
noninoni KrissyLou
Posted
Perhaps you could try prednisone shots into the joints that hurt the most rather than taking whole body prednisone orally? One shot can last 3 months or more. I had one into my left shoulder last year where there was pain from both PMR and osteoarthritis, and the almost instant relief was incredible. Now it is a year later and I am trying to get another shot scheduled as the pain has returned and keeps me awake at night.
My right shoulder sometimes hurts too, but the joints in that shoulder were totally replaced 3 years ago and it doesn't hurt as badly as the other one. So I take predisone pills for that one. However the range of motion is much reduced in the right shoulder, so I want to keep my arthritic left shoulder, pain and all, if possible so I can close the trunk of my car!
KrissyLou noninoni
Posted
Hi Noni, I had steroid injections mentioned to me by someone at work & have only briefly discussed them with my dr. She is reluctant but I can't remember why (so much information in my head these last few months, learning, researching, etc) so thank you, next time I see her, I'll ask about them again. I'm sure she has a valid reason but want to gather as much information as possible, learn as much as I can about PMR so my decisions about treatment options are informed, etc. Thanks for the reply.
julian. KrissyLou
Posted
I beleive the raised CPR/ESR in PMR can be an indication of the inflammation caused by whatever builds up in muscles due to the PMR. Though of course it can indicate other things.
Before I got a good diagnosis I was traveling (independently) and happened to be prescribed some non-steroidal anti-inflammatories. They didn't remove the PMR pain, just made a bit of difference between doing day to day things (like getting dressed) and needing help.
I have a sneaking suspicion that increased blood flow (the PMR possibly reduces blood flow through small vessels) helps remove whatever increases the inflammation. Simply, it seems that moderate exercise that increases the blood flow (not strength exercise) helps for me.
For me its all sort of tied together. Including adopting the approach that tomorrow will be better. And slowly but surely, by doing lots of little things that all add up, that's what happened. Though life without pred (pre-diagnosis) is not somewhere I'd like to go back to.
KrissyLou julian.
Posted
deborah26407 KrissyLou
Posted
Hi KrissyLou, is it worth looking for another rheumatologist? I googled 'rheumatologists Melbourne' for my Dad and the first Dr that came up sounds great - not sure if I am allowed to mention names though but he sounds as if he is really interested in a holistic approach and non-drug approaches when possible. He has been president of Arthritis Victoria for 3 years.
KrissyLou deborah26407
Posted
Hi & thank you - that should be enough clues for me. It has been suggested by a friend to look to an alternative rheumatologist as the one I have been seeing is really only interested in prescribing medications & for each side effect I've had with the prednisolone, there's been another medication to combat that. Aside from the expense, which is significant to say the least, I would prefer to be able to wean off at least some of the medications & am keen to try a holistic approach. Thank you again, I appreciate it.
debbie27473 KrissyLou
Posted
Hi Krissy. PMR is an auto immune disease and not an infection or virus. That's why antibiotics seem to take longer to work when you get a further condition like chest infection. I've had several chest and also kidney infections since Ive had pmr and every one has taken two lots of strong antibiotics to clear. Raised CRP is an indication of inflamation which is what causes pmr symptoms. Mine's been raised from the start., going up even further when I have an infection. Like you I have diabetes type 2. Mine was brought on by Prednisolone. I am trying to control it through diet but I have recently been diagnosed with background retinopathy, copd and chronic kidney disease. so they are talking about me starting Metformin. Anyway, back to you! I was wondering if you had read about the anti-inflamatory diet? I know some people here on the forum say it helps them a lot. If you google anti-inflamatory diet, there are loads of sites about it. I swear by my gadgets around the house. I've got'grabbers' in most rooms, a long handled dustpan and brush in the kitchen, a stool in the shower, along with a long handle with a sponge attached for washing legs, feet and back and a telescopic window wiper with sponge, which is great for cleaning high stuff! I'm afraid I haven't yet found anything to stop the exhaustion. I sometimes sleep most of the day and still sleep all night! Hope my ramblings are of some help. Take care, Debbie x
KrissyLou debbie27473
Posted
Hi Debbie, thank you so much for that information. More than anything so far the doctors have said, that makes sense. Like you, my previously diet controlled diabetes 2 was exacerbated by the Prednisolone & I'm now on Metformin. I'm so sorry to hear about your further health issues & your gadgets around the house idea is a brillian one which I am going to adopt straight away.
I appreciate the ramblings very much, thank you
.
Take care of you too, Kristen xxx
FlipDover_Aust KrissyLou
Posted
Hi from Canberra KrissyLou! Im also 52!
Debbie pretty much covered it, but PMR itself causes raised iinflammation markers and is NOT caused by an infection (although you do have an infection as well just to confuse the issue). So what I'm saying is that an infection is NOT the route cause of the inflammation. The inflamation is from the body attacking itself - That is was auto-immune diseases do, and in this case, it's attacking your major muscle groups - hips, back, shoulders, neck etc.
Your body gets TIRED trying to fight a war it can't win - hence the fatigue! Insomnia is just thrown in for fun!