I have been getting progressively more tired since I started reducing from 10 mg Pred to 7.5. I thought this might be pred withdrawal and it does seem to improve after a couple of weeks before I decrease again.
Because of possible osteoporosis I have been trying to walk more but this can lead to a lot of pain caused by a pre-existing condition.
I went for a short walk yesterday and could only make it half as far as I had planned. I had trouble breathing in enough air and had to keep gasping, my heart was pounding a bit and both my arms from the elbows down really ached
After some research I can see that my symptoms could be caused by anaemia. I know I am anaemic (I WILL talk to my doctor about it, but I can’t get an appointment in under 2 weeks!!)
I looked up Anaemia of Inflammation, I tried to post this before, but it wasn’t allowed and can only assume it was because of the link I had included.
Does this explain why PMR makes us so tired? Is it known why Pred can deal with the PAIN caused by the inflammation but not the ANEMIA caused by the inflammation?
I can see how it underlines the need to pace ourselves, our poor PMR muscles are deprived of oxygen so cannot be expected to work as normal.
Is everyone with PMR is anaemic? Is there anything we can do to improve the situation given that we may have plenty of stored iron, but the inflammation is preventing it getting into our blood?
I would appreciate your answers and comments. Thanks.
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Omanain
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Must have been a blip - this forum doesn't block links.
By no means everyone with PMR is anaemic (I don't think my Hb has ever been below 15) but it is a common problem with anyone with chronic illness or with autoimmune disorders. And the fatigue of autoimmune disorders is most likely separate from anaemia - the autoimmune disorder is attacking the body tissues in the background and that probably gives rise to the same sort of problems that a viral infection causes. You develop fatigue then - without being anaemic.
I don't know if there is any way to improve things but I do know that iron supplementation is not necessarily a good idea in chronic illness. Maybe slow building up of exercise helps - but it has to be slow, no high intensity training!
So the immune army is rushing around attacking what it sees as a threat, and the exhaust it produces in its rushing around is the inflammation that pred cleans up, but the pred cannot stop the actual attack? I am just trying to find a way of seeing it that I can understand!!! Does this make any kind of sense at all?!!
One analogy I use is a dripping tap and a bucket. The bucket eventually will fill the bucket and it overflows. The pred mops up the spill on the floor first and then starts scooping some water out of the bucket. But it can only do that if you are on enough pred so that there is some left over. That's your starting dose - if it is high enough it may even empty the bucket. Then you start to reduce the dose until you get to a dose that keeps the level in the bucket the same. If you overshoot, the level in the bucket will slowly start to rise again and eventually it will get to the top and overflow - back where you were again. A flare. Only repairing the tap by mending the broken bit (remission) or switching off the water (Actemra stopping the production of IL-6) will stop that.
Yes, that is a good picture to hold in my head, especially now as I am reducing from 7½ to 7. It is a complicated disorder I still a lot to learn. On the plus side, according to Edward Bullmore in The Inflamed Mind, people taking steroids for PMR type diseases are much less likely to develop Alzheimer's than the control group! Given my pred brain at the moment, I find that quite comforting!!
I was anaemic and my doctor recommended liquid iron supplement (Floradix or some such name) which I took for about a year at the beginning of treatment until ferritin level was better. Liquid iron much easier to tolerate than any other iron supplement I think.
I think that might be a bit of an exaggeration - a couple of types of iron supplement may possibly increase the level of a cancer marker in the blood. That isn't the same.
The other point is that anaemia is associated with some cancers. If a lazy GP doesn;t investigate properly but just hands out iron supplements, the patient may later be found to have cancer. But it wasn't necessarily the supplement.
i took the iron supplement until my iron level was normal. That's all. Happy to discontinue it, quite a long time ago now, because it was expensive, and also made taking my various supplements plus pred quite complicated as some things can't be taken with others.
Yes, I sometimes find it hard to believe I actually did the things I did a year or so ago. Nothing very physical because of other health problems, but now just being in company tires me. I used to spend one day a week helping my partner child-mind his grandchildren and always planned arts and crafts to keep them amused- all the clearing up that that involves as well as generally looking after them, preparing meals etc. We had to set off at 7.30 to be there for 8.30 in the morning and didn't get home until 6.30-7.00 in the evening. I haven't been able to do any of that for the past year. PMR, anaemia and bloody Annie!!
My Dr always mentions that pred causes muscle weakness so I wonder if that is part of it? I quite surprised myself by walking almost 3 miles on vacation last week. I have been trying to walk short distances most days maybe it is paying off. I did have an hour nap. I can do more this year than last. I am at 7.5 and ready to have a three year anniversary.
Much as we don’t feel like it, I think we are helped by activities such as walking, swimming, Pilates. I am at the same stage as you in the disease but I’ve definitely let my level of fitness slide since my daughter and grandchildren went to Australia. My grandson’s care was a great motivator. I am doing Pilates with my husband which is a small starting point, walking on the flat is good too. Fitness is separate from the disease as my OA of the knees has just warned me. I eat a pretty good diet too except for chocolate that has never tasted so good.
I did not go swimming last week because of the snow, once you stop it is so easy to not carry on. I did force myself to go today so back in the swing even though it was pouring with rain. I suppose it did not matter as I was going to get wet anyway!
Have you had your vitamin D levels checked. Mine were very low and were causing me to feel exhausted most of the time. After a high dose and levels being in the normal range I feel back to my old self.
Wouldn't it make sense to test for deficiencies in general as the old topic re vit.D and B12 can contribute to pre-existing esp. amongst older people. A general blood test showed low ferritin in my case however the GP didn't address it. PMRPro says we can have fatigue even if levels ok. I have read here of cautioning re iron. There is a lot of fucus and inquiry regards diminshed gut health and a link with autoimmune disease/conditions. Not by my GPs though. It is interesting that you mention in the process of mobilizing and features that may need attention re lack of energy. Because i was told there is no test for PMR then my question was at the beginning what is my metabolism doing, are there deficiencies, what is missing and then what can i do to get going again. I would think this could be part of the picture by the time we are 70. While on Pred. someone offered that it softens the tendons ?? So would that create difficulties as muscles and tendons normally work together. I was very wobbly at the time, and i wanted to move as muscles benefit by being hydrated as circulation improves. Then of course being at rest I would have to start all over again. Thank you Omanian for bringing up these topics. 🙄
Although the condition itself is not much fun I must admit I am quite enjoying learning all this stuff about how the body works. On mad days I try explaining to my immune system that it has got it wrong, maybe one day it will listen!
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