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Questions for those who have successfully weaned medrol

Posted , 9 users are following.

philoso4
philoso4

For those who have "successfully" weaned down to 8mg of medrol a day - or so - what levels of pain/stiffness, low energy, chipmunk cheeks, belly fat, etc. are you tolerating? I realize that it's difficult to give an objective measure of any of those symptoms. Any attempt at describing the levels would be helpful.

I began medrol 9 weeks ago. At the initial 20mg per day my first few days were heavenly.  Absolutely no pain/stiffness, there was abundant energy, marvelous attitude. Then things gradually got worse. I especially noticed lowered energy levels and even much lower endurance level for aerobic exercise. Pain/stiffness, although increased, was not at all bad. As I have tried to lower the dosage, pain/stiffness has increased but is still not limiting my ordinary activities. I have developed the chipmunk cheeks and a round belly. I am on the verge of lowering dosage to 16mg.

I would really appreciate hearing others' experiences from this level onward. Again, are you having to tolerate difficulties in order to lower dosage? And what sort and level of difficulties? Is there any improvement of energy and endurance?

2 likes, 19 replies

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  • tina-uk_cwall
    tina-uk_cwall philoso4

    Posted

    Hello Phil, I'm somewhat confused, are you on 8mgs if medrol daily or 16mgs? Regards, tina
    • philoso4
      philoso4 tina-uk_cwall

      Posted

      Sorry, tina, that I was not clear. I am at 17mg going to 16 tomorrow. I want to get to 8 as soon as practical in order to lessen the ill effects of steroids. Especially the low energy/endurance. I am hoping to learn what to expect when weaning.
    • tina-uk_cwall
      tina-uk_cwall philoso4

      Posted

      Hello Phil, so you started on 20mgs 9 weeks ago and you are currently on 17mgs. Personally if I was still suffering pain especially after the pain went on the higher dose, I would not reduce further still. Not every pmr patient swims happily through the reduction doses, even the top ones, so whether you like it or not maybe you should return to the dose that you were comfortable at, because that is clearly the dose that controlled all the inflamation.

      you may find that if you rush to reduce through the doses just to "get off the higher doses" you may have a flare and have to up your dose in which case you'll be on the higher doses for longer, which is precisely what you don't want.

      you sound to me like someone who has not accepted pmr. Pmr is rubbish, we all hate having it, and we all hate the medication that is required to keep the inflamation at bay. But, the medication is necessary, so try not to fight it. You will get down through the doses, but remember pmr dictates the level of medication not the other way round.

      yes, some of the side effects of the medication and the pmr are horrible but remember as the dose reduces so will the side effects, but don't push it.

      lastly, light weight bearing exercise is highly recommended, walking, etc, but aerobic exercise us a no no!! You are over doing it and this over doing it could also be responsible for some of your increased pain. Regards, tina

    • philoso4
      philoso4 tina-uk_cwall

      Posted

      I had not heard that aerobic exercise is a no no, tina. Thanks for the info. But it is greatly disappointing to learn. Before PMR I could walk a thirteen minute mile. (I'm 81.) And after the first few days on medrol I could do even better. My pickleball playing was great. So I'll just have to take it slowly?
    • tina-uk_cwall
      tina-uk_cwall philoso4

      Posted

      Hello Phil, yes, pmr and preds (medrol) weakens our muscles and steroids cause our bones to lose density. But walking is excellent for helping to increase the bone density and gentle exercise helps to keep the muscles in shape. The auto immune condition causes inflamation of the large muscles and synovial fluid in between the joints and this inflamation causes if untreated damage to the muscle etc cells so over exercising these areas will cause pain as these areas will require longer to repair themselves and rejuvenate. Therefore keep to the gentle exercise until you get to the lower doses. Regards, tina
    • Anhaga
      Anhaga philoso4

      Posted

      I had spent a year before diagnosis working through the pain, thinking that if only I could do a bit more I would get better.  The miracle of pred enabled me to do everything again, and I did even more because I was so freaked out by the possibility of osteoporosis.  Well, I learned from this forum that I hadn't been cured, and that it might be a good idea if I paced myself a bit better.  I think when people warn against aerobic exercise they might be talking about the kind of aerobic classes you go to a gym to do.  Certainly if you can walk and enjoy it that is the best single exercise you can do, and it is "aerobic".  Just don't push yourself to every greater achievements.  The best we can aim for now is to let the body tissues heal, which will be helped by gentle exercise.  I'm starting to learn tai chi and can already feel how it works the body without stressing it.  And I walk a couple of times a day.  I have a pedometer and measure my distance (10,000 steps or more per day but that includes all my activity) not my speed!  
    • tina-uk_cwall
      tina-uk_cwall Anhaga

      Posted

      Anhaga, you are quite right. The gym aerobic class was exactly the sort of exercise that should be avoided in the early stages. But as you say walking is aerobic too. When I walk I walk at a speed that just raises my heart pulse, so I am also exercising my heart and lungs too. Hopefully on Wednesday I'll be out of this cast and I can start walking again, albeit very slowly to start off with. Regards, tina
  • barbara75814
    barbara75814 philoso4

    Posted

    I live in America and don't know the meaning of "medrol," but I'm assuming it's a kind of (prednisone) steroid? Hope that's correct--

    In something less than a year I have gone from 19 mg. to 4 mg., and have noticed on the way: yes, chipmunk cheeks (your description is perfect), large belly, and quite swollen legs and feet. Most everyday shoes I cannot wear. During each 1 mg. reduction, I did notice a few "kinks" and unwanted jabs of slight pain and/or emotional bothers. However, these disappeared after about two days, and I would continue on without the new, weirder symptoms. So I guess you can say I would answer yes, I have to tolerate difficulties in order to lower the dosage. It's just that they're not monumental and one gets accustomed..........

    At present I have decided to proceed with the "slower than slow" reduction method to get from 4 mg. to zero mg. So far, so good.

    Energy levels don't vacillate terribly--just a wee bit up and down, now and then. I tend to try to ignore it all as much as I can.........

    Best wishes to you-- Barbara

     

    • philoso4
      philoso4 barbara75814

      Posted

      Barbara, I'm also USA. Medrol is methyl prednisolone. 4mg is the equivalent of 5mg prednisone. Thanks for your input.
  • Flutterbie57
    Flutterbie57 philoso4

    Posted

    Good question- I too was wondering about this. I went thru  a few days of heaven too initially. As I reduce, the stiffness has not returned, but other health issues have appeared and lethargy has increased. I am currently tolerating other difficulties in order to lower my dose.
  • EileenH
    EileenH philoso4

    Posted

    For those who don't know, Medrol is the brand name for methyl prednisolone - prednisolone with an added methyl group. It is supposed to be more anti-inflammatory than simple prednisolone or prednisone.

    All I can say is, for me Medrol was the deveil incarnate! It didn't manage the symptoms and caused me more side-effects in 9 months than all the rest of theime I have been on corticosteroids - so I'm probably not the best person to ask about them going away! They did all go away when I was switched to a form of prednisone - it took a while but I have lost 18kg/38lbs in weight, and my hair/skin is back to normal. No chipmunk cheeks, not fat gut!!! All gone.

    Being on pred does not mean you can go back to normal activities, whatever doctors try to tell us. Your muscles remain intolerant of acute exercise and are no longer able to signal you are asking them to do too much nor can they recover after exercise as well as normal. You too have to do your part at the management and that means pacing yourself and reting appropriately. You probably felt so good you went back to doing your normal activities - and that made you feel worse.  The pred has no effect on the autoimmune disease that gives rise to the symptoms to which we give the name of PMR - it continues the same, damaging cells in the tissues and causing fatigue and the other PMR effects of weakness and stiffness. Google the Spoon Theory by Christina Miseriando for an allegory about living with a chronic autoimmune disorder.

    You can lower the dose of pred and that is what you are meant to do: find the lowest dose that gives you the same result as the starting dose of pred. If you reduce too far the symptoms will no longer be controlled and instead of how you feel now you will get the PMR symptoms back that sent you to the doctor in the first place. It is up to you to find the lowest dose that controls the inflammation - and also to manage your lifestyle to fit. If you try to do a lot you will need more pred, rearrange your expectations and you will manage with less pred. You have a new normal to adjust to and how you manage that is up to you. 

    You will in time be able to do more - providing you are sensible and don't try to do too much at once. If you increase what you do in very small amounts at a time you should get to a reasonable level - but it took me 2 years to go from managing about 200 yds on crutches to now being able to walk for a couple of hour. On the flat with gentle slopes that is - even now if I have steep slopes to manage it is really hard work.

    No-one can say how your side effects will recede - mine improved very quickly when I switched from Medrol to prednisone but it still took 2 years to lose the weight, even with a very strict diet. Everyone is different - some lose weight steadily right from the start. Others lose no weight as long as they are taking any steroid and then it all just melts away. There is no hard and fast rule.

    And however much you want to get to 8mg as fast as possible it isn't something you can govern or influence - other than restricting your activity to relatively gentle walking or other gentle exercise. PMR came when it wanted - and it will go when it feels like it, if you are lucky. If you reduce your pred dose too far for the activity of the underlying disorder then the symptoms will come back, sure as eggs is eggs. At some point it should burn out and go into remission, then you will need no pred. But I wouldn't hold my breath waiting if I were you - I've had PMR for over 10 years and have been on pred for about 6 years,

    • margo25238
      margo25238 EileenH

      Posted

      Your description squares up with mine for the most part.  It is very encouraging to hear that you have lost weight; I am struggling with that now (35lbs)and have been for about 5 months, fat cheeks, no waistline, bloated most of the time, you name it.  I am now at 5mg for over two months, my body tells me something is 'pending' and i have been considering going back to 6 or 7mgs, which is the dose at which i felt most comfortable so far. And, then reducing using the 'dead slow' method.  I really dread giving in to this horror although i realize it could be so much worse.  But it feels really good to complain to a source which will throw me back some sensible thoughts to carry me through.  My doctor tells me my CRP(CReactiveProtein) is higher than it should be, as well, something called eGFR is out of range, can someone comment on what these indicate in 'real time'?

       

    • EileenH
      EileenH margo25238

      Posted

      The CRP is an inflammatory marker which usually increases when there is inflammation somewhere in the body. It suggests that your feeling that something is "pending" is very probably correct. While it is disappointing to have to go back to a higher dose, going up a bit sooner is better than having to go up a lot more later. 

      The eGFR (estimated glomerular filtration rate) is a way of calculating how well your kidneys are working:

      "The calculation for eGFR is intended to be used when kidney function and creatinine production are stable. If a creatinine level is measured when the kidney function is changing rapidly, such as with acute kidney failure, then it will not give a useful estimate of the filtration rate."

      This figure is worked out using an equation and the creatinine level in your blood and was introduced to monitor patients for signs of early kidney damage without having to go to the effort of 24 hour collections of urine. It is only a guide and if the figure isn't "normal range" it may be due to illness or it may be simply normal aging - the figure isn't valid for someone over 75 anyway because of the loss of muscle bulk that occurs anyway as we age. I'm not sure whether we don't suffer loss of muscle bulk because of taking pred to be honest so that could affect it but you'd need to ask a renal expert there.

      Did your doctor tell you the figure? 

    • margo25238
      margo25238 EileenH

      Posted

      Thank you EileenH - actually, i have the lab report  which indicates:

      out of range - 50     L

      reference range units - >60

       

    • EileenH
      EileenH margo25238

      Posted

      Yes it is a bit low - so is the doctor doing any investigations?
    • margo25238
      margo25238 EileenH

      Posted

      no, not as yet...I will explore with her, thanks.

       

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