I've been suffering from GCA for about 16 months now, and I've been wondering about a few things relating to muscle weakness, breathlessness, and the like. Here goes:
My understanding is that muscle weakness is caused by a lack of 02 to the muscles due to the inflammation of the blood vessels associated with GCA (which more or less constricts the blood vessels).
If this is true, then does that mean that those of us who suffer from muscle weakness have a vasculitis that affects much more than merely the head (cranial)?
When I tried to discuss this with my Rheumy, he more or less suggested that it didn't matter whether or not I had general vasculitis or cranial GCA because the treatment for both is the same.
But if that is true, then why do I still have muscle weakness if the prednisone I am taking is effectively treating the inflammation?
I'm writing this today, because it's on mind mind, because I had to carry several heavy boxes of books from my office into the basement and GEES it left me exhausted. Again, my understanding is that it should NOT have left me exhausted if the level of prednisone I am taking is sufficient.
Is my understanding correct, and if not, where am I going wrong?
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Pred can cause muscle wasting and weakness. It certainly did mine and although the wobblies got better with dose reduction, my muscle bulk took a hammering.
As SnazzyD said, some of us get the side effect of muscle wasting/weakness. After 7 years I'm down to 1 mg of prednisone but if the first years my muscle mass vanished in spite of my physical construction work that I continued with. A good half of my 50 pound weight loss came from muscle loss. And of course the weakness walked hand in hand with the loss. Some seem to be able to carefully exercise and keep the majority of the muscle mass and strength in tact. For others, like myself, it didn't seem to matter. Now I lift lighter boxes and take slower trips up and down the stairs. PMR makes one adapt.
I did on higher doses but if you hsve been on it for 10 years, I suspect that’s not the case for you. I also became very deconditioned from just walking the dogs. People have complained of it but it is probably worth making sure it really the Pred/PMR.
How bad is it? When does it occur exactly and how long does it take to get your breath back? What does your pulse do?
I have GCA. When I had PMR, I was able to continue exercising just fine. But absolutely not with GCA -- totally different. I'm fine on the flats, but as soon as there's a hill, or as soon as I do something strenuous, I get out of breath fast, my pulse goes up fast, and I feel weak and tired for hours afterwards. BTW, pulse goes backdown fairly rapidly.
My experience is that I was able to exercise almost normally over two years with GCA, but then got a spot of PMR at 3mg plus a shoulder injury so had to reduce to yoga and walking for a year for comfort. So I am feeling weaker now but, the interesting thing, I was asked to focus on a specific muscle in L knee by a physio and over two months was able to build it up to being as strong as the one in the R knee. So perhaps it is possible to build muscle slowly and carefully - but then we are all different.
My muscles are weak, particularly my legs, and I have developed a slow gait. One useful bit of advice I got from a physio was to alternate my leading leg going up and down stairs. I lead with my right, and have to place both feet on the same step, so when I remember I lead with my left. This is also kinder to the right, which could wear out more quickly.
I tend to think this is true for me also. My doctors all seem to think that my shortness of breath and ill feeling after strenuous exercise are due to either the disease or the prednisone. I was very healthy prior to diagnosis, but almost immediately after starting on 60 mg I started feeling AWFUL.
I just ready your bio and had a question. Why do you think your recent jaw pain is GCA? Can you describe what it feels like? Is it a sharp pain or a tightness? Is it both sides or one side only? Is it constant or only when you chew?
When I was first diagnosed with GCA (via a biopsy), I also had jaw WEAKNESS. I remember telling my wife that "it's funny, but my jaw gets tired when I chew -- I almost don't have the strength to finish chewing." The weakness went away after being put on 60 mg PRED. Then, some time later while tapering (I forget the actual dosage), I started getting jaw PAIN while chewing. Only while chewing, mainly on the right side but a lesser degree on the left side. This happened on several occasions, the first of which I reported it to my rheumy who told me to ignore it (so I did). But it happened again, along with a headache, so I did NOT tell my rheumy and decided to increase my dosage a bit on my own. The pain went away.
I hope this helps. Overall, my opinion on all of this is to "err on the side of caution."
Thank you. This has been helpful. I have had jaw tension and neck tension, as well as a mild headache, since tapering to 3 mg. I don't have jaw pain or weakness, and no pain when I chew. It's been concerning me, but I don't think it's GCA. My ESR and CRP are both low. And Paracetamol and Ibuprofen both take the headache away (but not the tension in my jaw). I think I have TMD.
On a NHS physical exercise sheet it gives a list of things you can do to help your muscles, and things you can do nothing about. First of the second list is 'being on steroids'. 🙁
Also have had muscle wasting. Cannot even walk an hour on flat surface without frequent rests. Doing strength exercises. Guess they are helping me maintain. Don’t know if it is steroids or PMR. Have reduced methylpred to 5 mgs. Fatigue but no flu/like symptoms.
Blood vessels don't just carry oxygen: they also bring water, nutrients, signalling hormones, immune cells, etc. Without an adequate supply, cells slow down, or shut down, or die. Even if adequate blood flow is restored, the body will need to clear away the damaged cells and replace them with new ones, soaking up a lot of resources in the process.
Evolution has equipped the brain with strategies to try to prevent serious, irreversible damage, and to aid the repairs process, if it detects the problem in time. For example: collapsing and/or fainting renders us horizontal, to maintain blood pressure; pain and fatigue warn us to slow down or stop what we are doing; aches, stiffness and weakness advise us to rest and allow more time for recovery.
We are not mechanical. This 'software' plays a role in disease, even though we rarely recognise it as such. And it can go wrong, too: sometimes over- or under-reacting.
I think your general understanding is correct but like others say and I've said often, muscle mass loss due to pred. can be significant in some. This eventually makes us weaker. It also prevents us exercising in sufficient duration to make any difference. The pred. induced myopathy we suffer continues whilst taking pred. and negates protein uptake and exercise to correct.
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