I'd like to give you a quick update and than I have a couple of questions.
First, still working from angry and frustrated to accepting this new journey. I have increased my dose of prednisone from 60 to 80 per my rhuemy' advice. My symptoms of GCA started to return, mostly the black lines in peripheral vision, as well leg, groin and shoulder pain. The "kicker" for me (pun intended) was not being able to walk up steps without my leg or legs collapsing. It seemed silly to be on the prednisone with the side effects and still partially immobile.
I had originally thought the return of the pain might be DOMS as I am trying to keep some exercise and activity in my routine. Yet, I was amazed at how better my legs were once I increased the prednisone. I could look and go up steps without that lurking fear of legs collapsing. I could pick up my 2 old grand daughter without shoulder pain. Yeah!
So now that I have a new baseline for better feeling legs, I'd like to continue to stretch and strengthen my muscles. I realize healing and resting is a top priority as the symptoms remind me the muscles have been and are still affected by the disease.
I have seen Delayed Onset Muscle Fatigue brought up as an concern and a sign that a I maybe pushing my muscles too far. When I was training, about 10 years ago, I was taught that this muscle type pain was often a good sign and not to be concerned as it was the tissue muscle breaking down and growing new and stronger tissue. For me the DOMS pain would start on day 2 after a workout and than last for 1-3 days.
So how does this all differ now that I have PMR and am taking prednisone. I assume PMR slows the blood flow through the muscles and connective tissues, correct? What than is the effect of the insufficient blood flow? Do the muscles not repair themselves or????
I believe prednisone is known to cause muscle atrophy, correct? Can someone explain the how and why?
I don't think I have gotten to the point where I can begin to guess if what i feel is DOMS verses PMR pain. I suffer from chronic fatigue so if I do too much, my body just shuts down for a nap. I literally can't keep my eyes open. This I remember from training and was told it was due to over training and not usually a good thing.
Thanks again to the experts on this forum and I look forward to your reply.
Best,
TJ
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Tj2017
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The problem in PMR is that the muscles are neither able to signal to you you have done enough nor able to repair themselves as fast as they normally would though whether it is just that the blood flow is poor I don't know. I have a suspicion that the mitochondria are involved in some way - and I hope a current study may shed some light on that if they can persuade enough volunteers to have the muscle biopsy. Poor blood flow will cause claudication pain in PMR - due to lack of oxygen that eases when you stop the activity. I suffered that in my thigh muscles - and that is probably what is happening when you drag yourself up the stairs because your thigh muscles feel like concrete.
You can still "train" and build up the muscles but you have to start small and build up VERY slowly - like exercising every second day to have a rest period, not exceeding what you can manage each day and resting appropriately. I used to ski - and started the season with 3 very short runs with rest on the lift. No more - I tried 4 one day rather too soon and although I had felt great at the top, I got 2/3 of the way down the run and hit the brick wall of fatigue. I could barely move my legs, never mind control my skis! Nor could I manage 1 longer run - the rest on the lift was essential. After a month or so I was able to do 9/10 of the short runs - but it was still not on to try a long run unless I stopped at a hut half way! That took much longer - but I was able to build up to skiing all morning after a couple of months. But if I overdid it any time I had DOMS that lasted for days. It was far better to not get to that stage because I would be able to go again 2 days later. And by February I could ski a moderate amount every day - and long runs included!
Coming from being a very fit active person for whom physical activity is very important to my sense of wellbeing, I understand the distress of seeing the body wasting away. Its horrible! I dream of a good gym session! This steroid business has made my body and muscles a completely different landscape, quite unlike my non-steroid self. Even on chemo my muscles were better. I have dropped all my previous ideas about fitness and building up, and am taking a different approach. I walk and hour a day and do not stress my muscles because I get no feedback at the time regarding doing too much. I don't mean PMR too much, just strain. I carried 3 watering cans of water up the garden and the next day and worse on day 2, my rib muscles on one side were stiff and painful.
You are on a very high dose of Pred because you have a serious condition. Your muscles are under a powerful chemical assault that is making them waste and unable to repair easily, as well as being supported by having inflammation in their blood supply pipes reduced. My advice is for now, avoid normal building up fitness mentality as if you are a well person who is a bit out of condition. I see the Pred improvement we get is bringing us back up to zero so we can recover, not bringing us back to 50% of normal. Reduction in symptoms is not a sign to increase your attack on lack of fitness, it means your inflammation is kept at bay. If you keep putting your body under physical stress now, it may not be able to recover enough to be able to drop your dose as quickly and life will be so much better when that happens. At this level, I would concentrate on keeping function gently, reducing next time if you get a backlash. At 80mg, it seems to me that if you are trying to work out the difference between DOMS and PMR your body is being over worked. Get better, allow your body to deal with this without being called off its task, so you can get down your dosage. As for the nap, since being on Pred, my body goes into shut down every afternoon and I have to sleep from 2-3. Others have said it too.
Anyway, I'll stop the sermon there. Off to walk my dog with my soggy muscles before it's too hot.
Thanks Snazzy - you have reminded me of a bit I overlooked.
Tj2017 - whatever your muscle problems are at present they aren't due to PMR. A dose of pred at the level you are on will deal with ANY PMR symptoms. Anything you feel that you are wondering "is this PMR or what" - it isn't PMR.
You have a serious illness in GCA, you are on a "serious" dose of pred and it alone is going to affect your body a lot. If you have DOMS - you are doing far too much for how ill you are...
Thanks for your post and unfortunately I agree with you that I do have a serious illness, perhaps more aggressive or advanced than I would like to admit. So far the 80 mg has done wonders for my pain, so I don't have any doubt that what I was feeling was PMR pain. Today was the first day in at least a year I felt mostly pain free.
Not to worry, I am not on any training program. I am still in learning mode and am hopeful that over the next few months I can combine some type of physical therapy as part of the recovery process.
I have been sedentary for over a year now. By sedentary I mean I spend most my time in bed or in the recliner chair. I generally take 2 naps a day and perform little or no exercise. (If you remember from my other post, I tried getting up and about and ended up with a 3 day crash and burn). My average walking steps per day is less than 1000. My routine includes a trip to the grocery store everyday and if I am doing good I'll walk from the store to the Pharma. I live in a very small town in the mountains so the distance is less than 3 small blocks.
In regards to claudication from PMR and GCA pain, that is horribly frustrating. I have been trying to crochet something for my grand daughter, yet after 10 minutes my arms don't want to work. Such a simple task is difficult.
I think I was confusing DOMS with the claudification (or the prednisone wearing off) as while I am not training, I am trying to add more steps to my daily routine, like walking to the mailbox. I would love to walk a mile or try a ski run, which would be impossible for me as I definitely get the "hit the wall" feeling. I experienced that the other day when I drove to my grand daughters birthday and that was too much. I slept in the 4 year old's bunk bed for two hours during the party! My grandiose ideas of getting back in shape to work full time in six months has changed to very small goals like walking to the mailbox without having to stop and take a break The mailbox is about a 800 yards from our door with a slight incline.
Well this sounds like I am whining. It is just what it my life is right now me. Fortunately I have a wonderful husband who is supporting me through this journey.
I start the Actermra next week and don't have any expectations for over night miracles. My rhuemy doesn't like to add variables so I am sure she will not change my routine from what I am currently doing until I have taken several doses. Movement and blood circulation is good and as you both advised over doing is not good.
Thanks again for your support. Have a good night. I am off to take my morning dose
Best,
TJ
Sorry for any typos. I try to correct them and some go away and others reappear.
Prepare for a bit of a rant: No need to start a new post because I am so right there with you and your questions.
Ditto to every one of your questions. I'm on a much lower dose but I suspect my average pred dose since Dec 21, 2016 has hovered around 16 with the ups and downs. I'm around 14 now. Actually still tapering from 15 to 14, slowly. Using a combo of Dorset Lady AND PemPro.
i am feeling much less strength in my legs in the last several weeks. No pain, but weaker, and less stamina. It hit me rather suddenly right after my Grandson's Bar Mitzvah, when all the company left. Probably no surprise there. Went from a high to a low. Physically and a bit emotionally too. I had held at 17 and even went up a bit at the peak of the events. Then I started tapering again. Went from 17 to about 14 in 4 weeks. For a few days at 15 I did have twinges in my groin and was worried about a flair, but those have subsided and my markers are holding low.
Because of the latter, I'm assuming that I'm experiencing side effects of the accumulated dosage of Pred, Pred withdrawal, and some PMR reactivity due to using too many spoons. I think it is mostly the accumulated dosage because my lipids, which had been going down, suddenly went way up, from total 204 to total 289. Never have been so high. I did cheat on carbs a bit during the festivities, but not much on saturated fats......Gained 6 pounds and then lost them again. Was just about back to my lower weight when the blood test was taken. I've seen some blogs about carbs causing cholesterol to go up even more than saturated fat, but that whole literature is so full of contradictions I don't know where to begin. I keep thinking that maybe pred + carbs are just a pretty lethal combo. But maybe I'm kidding myself about the amount of fat I'm taking in. Reducing to one egg a day, substituting nonfat yogurt and lactose pills.
And I feel low mood and whiney. Generalized aches and pains from old stuff I think, scoliosis suddenly worse, sciatica reminding me of itself, wondering how I'll be able to go anywhere this summer. Don't like myself in this mood, not at all.
I think I'll binge watch Outlander. Have both seasons on my DVR now and just enough time to watch it all again before it returns for season 3 this fall. Full disclosure. I have no association with the program, but it does take me away from myself....which might be just as well these days. LOL
There is good physiology and biochemistry to back carbs messing up blood lipid levels. And dietary cholesterol is not much of a contributor to blood cholesterol - your liver makes at least 85% of your blood cholesterol and that doesn't change whatever you eat,
This is the report by a reliable website of a study showing low carb improves cholesterol in the long term:
Thanks for your post and sorry for your weakness in your legs. It seems we trade the pain and inflammation of PMR for a different type of pain and side effect.
Studies have shown that the liver does make most of our bodies cholesterol And therefore a low cholesterol diet is not the perfect answer. Studies also show low cabs do make a difference and I think we see this appears to be true from many of the folks on this forum. I know eating carbs aggravate my inflammation.
Don't dislike yourself for a few moments of enjoyment of food. Life is life and we are not perfect. I hope you enjoyed Outlander and be sure to treat yourself well. Relax and enjoy the summer. Take short trips, breathe the air, and read a good romance.
I am going to answer my own questions in this post as I try to understand how best to help rehabilitate myself during this journey. As a note, this info was researched online and I don't have all the links
Dr. Marc Miller wrote an article titled "Glucocorticoids Induced Myopathy." In this article he states "Glucocorticoids have a direct catabolic effect on skeletal muscles via effects on the intermediary metabolism that provide amino acids as a substrate for gluconeogenesis." In general, the steroids break down the muscle tissue.
I found a really good layman description on a massage technique page. "Corticosteroid myopathy is damage to the muscle fibers caused by treatment with corticosteroids, such as prednisone... Myopathy causes changes in the muscle fibers, including atrophy (shrinkage), lipid (fat) deposits, necrotic (dead) areas, and increased interstitial (connective) tissue between fibers." (FYI, the massage site recommended not massaging patients who have steroid myopathy, unless they have some expertise. A gentle rubbing at best to slightly encourage mild circulation.)
Other resources noted that the higher dose and time the more damage is done, and everyone is different. The best recourse is to stop steroids. If that is not possible than low impact exercise which gradually builds over time.
For myself, who has not exercised for several years, this would mean to start with the basics, like very short walks to start and gradually building up over time. Arms and shoulders are important too. Stretching and strengthening as discussed on this forum.
This myopathy is also connected to the pains associated with steroid withdrawal. It is great to hear other folks experience so I can learn to differentiate between the withdrawal and PMR pain. It can't be easy.
Thanks again for all the great advice. I'll keep this short.
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