I can't find the latest post. Dad2Cue was the last poster with an interesting medical article on this. It got me thinking and I prepared this response. i am posting this for others reaction.
Interesting read D2C. It confirms my own observations of what has happened to me. If I may summarize in plain English this is my understanding. PMR and GCA only respond to Corticosteroids. Elements of this drug bind to the inflammatory elements of the disease and suppresses the inflammation. The disease acts on the muscle and prevents oxygen feeding it so contracting and preventing blood from circulating properly. This prevents and cripples the muscles normal process and also by curtailing blood flow prevents the clearance of toxins and waste including lactic acid. Untreated it would close the body down. Corticosteroids free up the muscle function by suppressing this inflammation.
Unfortunately the side effect of the steroid is to also break down the muscle fibers. I assume at a molecular level elements of the drug bind to muscle and convert the broken down muscle into fat which the body either uses or stores, hence Cushing syndrome. This destruction of muscle mainly in the buttocks, thighs, calves and arms weakens the individual. By another process elements of the drug also prevent the nutritious protein and other beneficial substances from replenishing the muscle to rebuild it. Through being weaker the individual is less able to do sufficient exercise to compensate the loss. This double whammy scuppers the rebuilding of lost muscle in an ever increasing spiral of reducing capacity. It seems that until one can reduce the dose of steroid to a minimal level this deterioration will continue. 10mg or less seems the target figure by inference. Everyone reacts differently but this must be a general picture which all recognize. It also affects the heart and through observation increases heart rate and blood pressure if of a sufficiently large dose and time frame. This results in affected breathing and reduced physical capacity for work. Beta blockers are needed to protect the heart and regulate this condition. Fluid tends to build from the ankles to the thighs as a result and diuretics like furosemide are used to help control this. The swelling in the legs affects mobility and balance. Elevating them helps the lymph system and blood circulation in reducing the fluid, but until the heart rate decreases and the medication be reduced it cannot be fully resolved. That’s as far as I have got in trying to understand this condition mainly as it relates to me. I would be interested in others understanding and reaction to my reasoning.
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I can't really answer. I don't know whether my body hurts more at the moment because:
1) I have PMR and am being forced to reduce pred too fast.
2) I am misdiagnosed and have something else...like fibromyalgia?
3) I have injuries as well as PMR. Possibly incurred while trying to cope with PMR. (I believe this because my problems are not completely symmetrical.) These won't heal because of PMR or due to the steroids?
4) Every so often I attempt to help myself with gentle, mainly stretching, exercises which seem to work but then do harm? That fits with your arguement?
5) It has been a very long cold winter so blood flow is even more reduced. Might I improve in the Spring?
6) The damaging effect of being on steroids is starting to mount up? Should I tolerate the pain and keep reducing slowly? Mr Rheumi wants that.
I am not aware of having any heart problems.
You were feeling very positive about your exercise programme. Is it still working for you?
Hi Seacat30. still positive on exercises. They work and keep everything mobile. I've lost about 60% muscle mass and that seriously affects what I can do. Still split logs and make things in workshop. Fix stuff around farm and walk dogs but how much I can manage is affected. I'm also reducing from the recent high of 40 mg to cope with the flare . Down to 26 and shortly reducing again. I was just trying to structure the process of muscle waste as a result of pred. and its effects as it related to me and see how others reacted. This was the article D2C posted ncbi.nlm.nih.gov/books/NBK5...
Very glad to hear that. I am back down on 8mg again. If I manage to get lower and my abilities to rebuild my afflicted muscles improve I will let you know.
as far as your concerns go I think,1...too fast a reduction could be the reason 2..Misdiagnosis is always possible, but if the pred. had a good effect in reducing or nullifying the pain, then it's likely you have PMR. 3...No ones pains are truly symmetrical as we all have one side stronger or more used than the other so our wear and tear is often biased one side or the other. 4..If your muscles are still suffering contraction because you still have inflammation then stretching won't work as the muscles are still starved of oxygen and can't work properly. 5..Cold does impact on circulation but only if you have reynards disease at some level on the spectrum. I have a mild form of it which affects certain fingers and toes but not severe. The blood flow should still pump properly and circulate whatever the weather. 6..It's not what the Rheumy wants but what you need that determines the process of reduction. pain from too rapid reduction is not the right approach. I have a consultation booked with my recalcitrant Rheumy on 7th March. Should be an interesting conversation. He's about to be educated.
I won't need luck. My first and so far only consultation was on 20th sept. At that meeting he complained that I should have been referred to him within 6 days of my GCA diagnosis in June 2021. I did point out that it wasn't down to us but their system. That I had been on 40mg pred. for3months before seeing him rather made his proposal for a biopsy ineffectual to diagnose GCA. After several requests from my GP we received his report written on 19th Nov. on 29th Dec. which still confirmed his wish for a biopsy which by the way I had already refused. In it he says that the next consultation will be in Jan. Despite contacting his dept. for advice on dosage of pred. and having a flare of GCA symptoms before Christmas, there was no response despite his secretaries assurance. The consultation on March 7th is his idea of communication and support. Rest assured he is in for a session.
Cheers D2C. Sorry you are quite correct. My bad. Should have said an inflammatory condition. Sorting one from another is the conundrum we face daily. Since you are here is my summary of how pred breaks down muscle ok?
Cheers D2C. It's something I can't control. Thirst for knowing how something works is hardwired into my makeup. Perversely it intrigues me even as it is eating me away. In terms of understanding I think I am progressing but physically I'm a disaster zone. This is obviously comparing what I could do to what I can do now. Slight deterioration of heart pumping but the consultant says it's not serious and I can put it under some stress so will start to use resistance on turbo to try and stop the deterioration in leg muscle. Worth a shot. down to 26mg now so hoping this time to continue reduction in safe stages and avoid another flare. PMR is bad enough but GCA is a real sod. Good to hear you are off pred. but 30 years with this condition and others must be some horrible life trip. I hinestly don't know how you have borne it.
Thanks for your detailed post and all the info you have shared. I struggle to explain what is happening to me and this info is exactly what I needed to share with my family so they get what is happening and why sometimes I just cant get going with the vitality I had a year ago. I am reducing pred slowly and have recently retired from work and focussing on exercise and rebuilding my strength (hoping to) Thanks again
I admire your outlook. This is truly an unwanted journey but yes life could be worse. My daughter had leukemia when she was a teenager and watching your child suffer Is worse than our own suffering. She was one of the lucky ones and survived and for that I’m forever grateful. I’m trying to keep this in perspective and hope I can live a somewhat normal life again
Like nallufl24 I too echo those sentiments. As you say, there is always someone worse off than you. You also have a really good relationship with your consultants as friends and that must help.
I don't have the professional or medical expertise to answer or offer advice but can comment on some aspects . My Rheumatologist suspected another cause of numbness and nerve sensitivity so sent me for a nerve conduction test for mononeuritis multiplex(sounds like a cinema event). Very mild length dependent sensory axonal peripheral neuropathy was found. In plain English I believe that to mean the nerve response is slightly slower than in prime state but nothing of any consequence. I have noticed an inability to respond fast and this corresponds to the primary destruction of fast twitch muscle by prednisolone. That would explain why one starts to run but the legs don't respond as fast as they used to. I have tripped over my feet more than once and fallen over in such circumstances. I suspect that much of your problem relates to other Rheumatological conditions you have and I have no knowledge of those. As for saddle numbness there are two aspects to this. The first for men is known as numb penis as continued riding without rising from the saddle at intervals leads to precisely that condition. Not pleasant. The second is saddle soreness especially on the pelvis points of contact and prolonged riding without a good padded pair of shorts is damaging and painful. You can buy different grades of padded shorts depending on the type of riding you do. The numbness I feel in my feet and hands which started this study I now attribute to fluid retention and I see no reason to change that observation yet. Until can get rid of this fluid which leads to swelling in legs and arms i won't be able to be certain of the cause. Work in progress.
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Has anyone heard of this
Severe muscle weakness in the thighs
Muscle Loss
Leflunomide and PMR
Steroids and Medications
