1/2 mg decrease!

Posted , 14 users are following.

I am amazed how 1/2 mg decrease can make so much difference.  I was on 3 1/2 mg for three weeks so I decided to go down to 3 mg - wow!  Something has hit me big time, terrific fatigue, weak, more pain - I can't believe it.

?????

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  • Posted

    I was on a "fast track" reducing pred from 15mg in Dec 2015 to 5mg in Sep 2016 when I hit the wall, when I tried to reduce from 5 to 4.5.  I went back to 5mg and stay there for next 6 months. At first I did not feel as good as before attempting to reduce to 4.5, but over time it seems that I got better. So in May this year I reduced from 5 to 4.5 with no issues. Now I am just starting 4.5 to 4.0 reduction.

    The key is to keep in mind that prednisone is only managing PMR symptoms and it is reduction in PMR activity that enables reduction in pred dose, not the other way around. There is no point to force reduction in prednisone. One can easily get ahead of PMR and reduce too fast, which will result in flair. Every time we reduce, we really test if new dose is sufficient to manage PMR. If it is - great. If not, hey it is a simply message that body is not ready yet  and PMR is still active and requires us to stay on higher dose.

    • Posted

      Would it be great to understand what the PMR activity actually is! Is it caused by a lack of blood to the muscles? By a virus hiding in the muscles. Is it a form of vasculitis? Too many unknowns at this point, hopefully at some point we might get some answers. Till then I will take my Phred, put a smile on my face and keep moving forward. 🙂

    • Posted

      It is an autoimmune disorder that makes your immune system unable to recognise your body as self and causes it to attack your body and damage tissues. The tissue damage breaks down cells - causing inflammation, swelling and pain as a result. What we call PMR is just the symptoms of that.

      It is almost certainly a vasculitis. They haven't been able to identify a viral cause of any autoimmune disease other than probably a viral infection was possibly the final insult to the immune system that - like the proverbial straw - broke the camel's back. In vasculitis some of the symptoms ARE due to a lack of blood supply to the tissues - claudication for example is solely due to reduced blood supply for various reasons. 

    • Posted

      I tend to think of vasculitis as one of many symptoms of the immune system attacking various body tissues.  I don't know that bursa/synovia are supplied by blood vessels, but are targets of attack none the less.

      I just read that "synovial joints are highly innervated but vascularized indirectly by nearby tissues", and fromHilton in 1863(!) that "The same trunks of nerves, whose branches supply the groups of muscles moving a joint, furnish also a distribution of nerves to the skin over the insertions of the same muscles; and what at this moment more especially merits our attention-the interior of the joint receives its nerves from the same source.", but I really do need to study up further on just how the synovial tissues get by, as they seem to be the locus of nearly all of my remaining symptoms, currently affecting my arm-to-shoulder joint regions (variously on either or both sides of my body).

      Where vasculitis itself has been most evident to me was the muscle cramping near my lower legs, something that I am still occasionally afflicted with, during sleep, after taking my twice-per-week, 5-mile run during the day.  Just last night I awoke with severe cramping of both leg's shin muscles, which as usual took at least five minutes to begin to subside after I got up and somewhat writhed as usual while standing on one or two feet. It literally takes over five minutes to get the blood circulating again, but relief is then almost sudden over just the last couple of minutes of the cramping episode.

      Unlike cramping due to severe over-exertion, I wake up just hours later in the morning with no physical symptom at all of the night time severe cramping episode, no pain or stiffness at all in my shins! I note also that this affliction began only after my initial, severe pmr symptoms were well underway, so I consider this almost certainly to be a part of my greater pmr syndrome.

    • Posted

      Well yes - you're quite right. I think GCA itself is purely vasculitis - and there is now evidence it seems that it is in the tiny arteries supplying the walls of the larger arteries. PMR seems to be a bit of a bastardised effort with tenovitis, synovitis and bursitis added in. But there is some thought that there are a few varying versions of PMR - hence the varying lengths and presentations. All foully complicated - like almost all autoimmune disease I fear.

      Did your night cramps start post pred? Could it be magnesium depletion?

    • Posted

      I've had a painful shoulder, or more accurately upper arm for several months.  My physiotherapist now tells me it's rotator cuff although initially she didn't think so.  Says because tendons are involved healing is slower because there is less blood supply than you'd get to muscles.  As I've not been prone to injuries like this in the past I don't know whether to blame PMR, pred or old age!  But it isn't from my not trying to maintain fitness throughout my adult life.

    • Posted

      After this year's springtime yard work made my right shoulder so painful that I/ had to more than triple my pred dosage from 1.75 to 7mg, I was really thinking that it might be an injury, such is the way that irritated synovial tissues start to act like injuries in response to usage of the afflicted joint.

      But since then, I've had my right arm/shoulder joint flare up even at the higher dosages of pred!

      So even though I HAVE had a previous injury to my right shoulder, I believe it is the pmr that is causing all of my discomfort, which varies depending on usage and on the time of day.

      I noticed in my reading that the shoulder and hip socket joints are of the ball-and-socket variety (other joints in the body are of many other descriptions), and that the hip socket is said to be hardened to sustain the more-continuous support of body weight.  So how this relates to 1) the hip and shoulder joints being the ones most afflicted by pmr, and 2) the hip socket having become cleared of symptoms first, remains an interesting mystery to me.

      Since my last post, I also read that "Numerous vessels from this plexus pierce the fibrous capsule and form a rich vascular plexus in the deeper part of the synovial membrane. The blood vessels of the synovial membrane terminate around the articular margins in a fringe of looped anastomoses termed the circulus vasculosus (circulus articularis vasculosus). It supplies the capsule, synovial membrane and the epiphyses. The articular cartilage is avascular." More food for thought.

      And Eileen, I'm awaiting the discovery of what seems likely to be more links to good literature, so thanks in advance!

    • Posted

      I mis-typed in my last post above, I meant to write that BOTH shoulder joints had recently been more or less alternatingly afflicted.

      Like any Drill Sargeant could perhaps be quoted, "left, left, left-right-left", or some such!

    • Posted

      Thank you for the great information. Once again jump in to help us out! Keep smiling Lady and giving us great knowledge.

      🙂

    • Posted

      It's a bit of all three, I think.  I used to blame everything on PMR and Pred, but Polyarthritis then set in, followed by tendonitis in arms, knees and ankles.  But what would have come in old age anyway?

    • Posted

      I had cramps early in PMR cycle.  Most of them were gone after I started to pay attention on what I eat. I do take prednisone twice a day with about 100 gr of yogurt and banana. This seems to replenish magnesium and potassium needed to prevent cramps.

      For the shin muscles, which were so tight that were impacting alignment in my knee, I do stretching. I will attempt to describe the method: while sitting, take the socks off, place the leg you are stretching over the other knee.  Grab the tows with your hand, best to put your fingers in between the tows and stretch the shin muscle. Within a day or so, shin muscle should be much softer and relaxed.

    • Posted

      Da, on the second thought, whenever I had shin problem, it was related to the surface that I was running on. Any chance that you are running on hard surface, like concrete? If so, that will cause shin problems. Solution is to either change the path or change running shoes that would be more suitable for hard surface.
    • Posted

      Dan, I don't believe my shoulder issue is PMR related, other than that PMR/pred made me more vulnerable to this kind of injury and may possibly be affecting recovery.  

    • Posted

      Not prescribed, but I was getting awful cramps in feet and hands. Take magnesium now. 
    • Posted

      Does the magnesium help.?

      I cannot tolerate more than 100mg without getting intestinal cramps.

    • Posted

      karenjaninaz, funny how different are bodies are, I have been taking 1200 mg a day for years with no side effects.
    • Posted

      Magnesium comes in different forms.  I get mine from Epsom salts bath.  There is a kind you can get to put on your skin but I didn't find it when I looked.  

    • Posted

      Oh yes. But since I'm on so many pills, easy to pop in another!! (Just can't believe I said this. After going decades without seeing a doctor, never had any pills, can't even remember the last antibiotic! Now it's a mindset.)

      Have a good weekend - looks nice in Auckland after a night of rain. Hardly winter-ish.

       

    • Posted

      Replying to Karenjaninaz who can't take more than 100 mg at a time.  Although come to think of it maybe that's all she needs. wink

    • Posted

      I too have cramping in my hands in feet. Never tried Magnesium. I have bottles with different formulations and am wondering which is best. Magnesium Malate, Magn. Glycinate, or Magn. oxide + Magn. gluconate
    • Posted

      sandy08116, I have a friend who goes to NZ to ski, another friend and I were talking and wonder where in NZ, and the length of the ski season. Do you know? Thanks
    • Posted

      In the North Island, there is Whakapapa in the central highlands. Others are in the South Island in the southern alps. Season is on. Great snow for skiing. Born 8 deg above the Equator, I'm not a skier, but visited several. I saw my first snow in Queenstown, on the Wakatipu Ranges. Went crazy, opened car door and ran into the snow and disappeared in a soft snow drift! 

    • Posted

      mine says "banana" biggrin.  Never liked pills, especially when the natural alternative is available.

    • Posted

      Dark greens and dark chocolate have more... ;-)
    • Posted

      Guilty as charged !... Love chocolate... Always try to find one that have high percent of cocoa (70% or more). And certainly taste better then any magnesium pills biggrin
    • Posted

      Yes, I was on a diet few years back glass red wine and 2 squares of 90% chocolate. Great diet, but did not work! 🙂🙂

    • Posted

      Did you enjoy it? Did you feel good afterwards? 

      It works for me - even if it didn't cure PMR.

    • Posted

      Hi EileenH, the diet was for my diabetes it didn't work, but I did enjoy it. Now I am on this diet to knock down viruses, who knows maybe it will be good for the diabetes. Still in there pushing forward with a smile on my face. 🙂

    • Posted

      How can anyone not love a diet with 2 squares of 90% plus Chocolate and a glass of red wine. I wished it worked. Did work gave the books away. My friends thought it might affect my bike riding, it did not! 🙂

    • Posted

      you got the recipe wrong... it was one square of chocolate  and two glasses of red wine... cheesygrin.
    • Posted

      I guess that was what was wrong with the diet. Yours does sound better. I hope my virus diet works, although I use to it now no cravings. A cold beer would be nice. 🙂

    • Posted

      Thanks sandy08116, skiing is not for everyone, but I love to ski and have enjoyed winter sports since I was little. Enjoy skating on frozen pond with my mother when I was about five. My father thought we were crazy. 🙂

    • Posted

      I asked the doctors (GP and hospital) if there were any foods I should be eating, or not eating. Was told fibre, fruits, milk (for calcium) were important. Nothing was off the menu. Not even alcohol, though this was self-imposed abstinence. I love beer (especially craft beer) but it was a waste of money - my sense of taste was so altered. But now, with reduction of prednisone, true taste is coming back and yesterday, at lunch, I had my first beer in months!!
    • Posted

      I am still waiting for my taste to come back, then having some local craft beer!
    • Posted

      My taste did not really come back until I reduced below 5mg. All of a sudden I noticed that wine I used to like did not taste that great.  Food is also delicious... and I gain a bit of weight too ( just a couple of lb) nothing to worry about.
    • Posted

      Once I got under 10 mg I felt much better and my wife said I was much easier to live with. Now after breakfast I go for an hour or so walking and couple hours after dinner. Get the blood sugar better under control plus build my strength and endurance back up. Working to get back on my bike and get ready for ski season, want to stay active, not ready for old age.

      SMILING! 🙂

    • Posted

      Impressed! I would walk, but (my excuse) I live among hills. It's either pant or fear rolling. 

    • Posted

      Sandy08116, I lived at sea level Narragansett, RI before moving to the mountains of New Mexico at 7,500 ft. So now I exercise at over 7,000 ft instead of sea level. Up and down the hills in town or climbing the roads on my bicycle. My dad always told no excuses, do it! Come on Sandy, let's get out there with a smile on your face and start doing it. Set a goal, 10 minutes, half hour and try to increase it a bit each day. Think positive! 🙂🙂

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