SED Rate Graph shows ups and downs

Posted , 10 users are following.

Hi all, I'm one of the many whose doctor is reluctant to up my prednisone.  But last time she said, yes I could take 20mg for 3 months, and then she's not going to prescribe it again.  So I started at 20, after being miserable at 15, and soon felt better, if not perfect.  After a month I took a blood test and found my SED rate was 45, down from 52 and 64 of my last tests. I thought I'd take 19mg the next month, 18 the next and so on.  Would that work?  I'm not sure because I still feel pretty crummy in my arms and legs.  Part of my problem is in my lower back, so I can't tell which is which PMR or back.  But why would my arms hurt from a bad back?  Thanks for any info.

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  • Posted

    ptolemy, and Eilleen, I was heavy from about age 45 due to a bad knee I kept putting off getting replaced plus fibromyalgia and some meds, but I was only Ha! 180.  Then another knee problem and back, but mostly I think the prednisone caused me to eat more.  I also have a lifetime of major depression.  A bad combo, I guess.  Now I am 64, and 5'6'' and embarrassed that I, the skinny kid who they said would never get fat, am so big and ugly like an old toad.  

    • Posted

      ptolemy, I am now at 300 pounds.  I would say maybe 100 of that I'd blame on the prednisone and all my other troubles and meds.

    • Posted

      Debbie, in reading your post my heart just Breaks for you!! Please don't be so cruel to yourself. There's enough stranger's to do that for you! You are dealing with all kinds if things most people will thankfully never have to. Be kind to yourself and get well. We're here for you.😉

  • Posted

    Wow  Debbie -  300 lbs and I’m moaning about 21 in 3 months! I was diagnosed with wedge fractures of the spine before I started on Pred! Yet my bone scans were ‘normal’ and no one has mentioned the fractures again! I have an appointment with my GP on 4th and will be armed with a list of questions....maybe I can throw some light on a few posts on here but don’t hold your breath! I don’t have much faith in my docs practice as they nearly all locums and you don’t be get any consistentancy! But you never know yer luck...! X
  • Posted

    ptolemy, we had a wonderful therapy pool here that I went to class two times a week, but they closed down and I haven't found another in Reno.  I would like to walk for exercise and maybe do chair yoga.  My will power or whatever it is that gets one going is poor.

    • Posted

      It is better to do things with other people usually as it is easy to give up by yourself. Is there a swimming pool around your area? Could you join a walking group?
    • Posted

      We have a recreational place that has classes weekly, and I've been thinking of doing Chair Yoga or Sit and Get Fit each week and build up to twice a week.  Their pool is not heated very high, but I might do that next summer.  Thanks for your interest.

    • Posted

      I hope it all goes well. I hope you get things sorted out with your doctor too.
  • Posted

    Yes Lynda, see below, I gained about 100 pounds since starting Prednisone and now weigh almost 300 pounds.  I was aghast to see the 300 on the scale at the dr's because just two weeks before or so I weighed in at 288 and planned to cut carbs and lose eight pounds for my next visit.  How could it be?

    • Posted

      i would say your doctor was negligent.  Rather than blaming you for the weight gain she should have done what she could to help you curb the gain, which is 50% more than you were at the beginning of this awful journey.  As the others have said there are things we can do.  It's that first step which is the hardest.  About eighteen months ago a gentleman in his eighties who sometimes posts here was virtually confined to a wheelchair because of his loss of fitness from PMR.  By starting with a very simple thing, one five minute walk a day, he surprisingly quickly began to recover his former fitness and the following winter was back teaching ski classes!  

      If you can steel yourself to give up all carbs from grains, and some would add root vegetables as well but let's not get carried away to start, just give up all grains, then you may find in a week or so your craving for the fattening foods like bread and sweets may diminish.  Add a short spell of exercise every day, rain or shine, hot or cold, a walk in the open air would be great.  What is that old saying?  A journey of a hundred miles begins with a single step.  And it continues with the second step the next day, and a third, until one day you realize you can do ever so many more steps every day!  You can do it.  Don't let an unhelpful doctor, who should be caring for you, get you down!

    • Posted

      Hi Debbie, I can completely relate to your weight gain of 12lbs as I too have gained 13lbs in 2+wks (maybe more now, not sure as I'm afraid to get on the scalesad ). I've never had a weight problem and have a fairly balanced diet so I've gotta believe this is 100% prednisone related. When I hear people say to cut my carbs, I kinda "bristle" as now I'm sposed to change my diet (along with cope with the pmr/side effects) as well?? JEEZ! I'm not diabetic (thankfully) I'm not a sugar freak, I just enjoy a normal amount of all food types. Cutting carbs I S NOT EASY....especially when that's not been a problem before! Hang in there deb as I will try to do as well!

    • Posted

      I know what you mean.  Some people say if you eat anti inflammatory foods you will feel better, but I don't think that's been proven???  Has it been proven, except for Eilleen, that no carbs helps pred. fat?  But I know people do lose weight on that diet.  One time a doctor, not this one I have now, told me to check the carb on whatever I eat and keep it below 15g for each single thing.  I did lose 30 pounds that time.

    • Posted

      Anhaga, I love the British saying of "ever so much more" or 'ever so many".  Sounds so cozy like a British mystery, ever so cozy.

       

    • Posted

      I don't have an answer for cutting the carbs (other than what I've read on this forum) as I've never had to worry about it before. I'm really struggling to wrap my head around a new life style. I'm afraid I'm going to fail miserably at it as eating great meals is such a social thing with my family/friends!

    • Posted

      There are a lot of people who have found it works. There are a few on this forum and a lot on the HealthUnlocked forum - go there and ask if you think it is just me. I assure you it isn't. If it were only me I wouldn't go on about it - I talk about it a lot BECAUSE I know loads of others it has helped. 

      I rarely eat more than 45g of utilisable carbs in a day in order to lose weight, not just 3 portions. I'm probably fairly extreme and that is, perhaps, my bad luck. But I don't crave carbs - I don't refuse to eat them, if I want an icecream I have one, I live in the land of the gelato after all. But I have ONE scoop and it is an occasional treat, not a daily indulgence.

      I suppose it may feel as if " now I'm sposed to change my diet (along with cope with the pmr/side effects) as well" as Lynda puts it. But the change in diet IS part of the coping with the pred side effects. It also helps reduce the risk of developing pred-induced diabetes - which is far more of a problem than just being overweight. And many people also find cutting the sugar and grains in their diet helps the inflammation and pain/stifffness of PMR. Not enough to stop the pred altogether but they are better able to reduce the dose - which in turn helps the side effects of pred.

      I do appreciate how difficult it is for people living in the USA - your diet, especially eating out, tends tto be very carb-based. But a hamburger without the bun is a massive amount of carbs saved. As a European I go out to eat great meals that are meat/fish (no carbs) with vegetables/salad (low carbs) and still have a great meal. :ast night I had mussels with a yoghurt sauce and used a small slice of bread, about the size of the palm of my hand to wipe the bowl clean. Then I had panna cotta as a treat - I wouldn't normally eat dessert. But it too was in a small jar about an inch and half square. It isn't just carbs - it is about learning portion control too.

    • Posted

      Hi Eilleen, sorry I said what I did before.  I guess I get upset at myself for being so sweet-toothed that I can't seem to say no.  I'm trying to eat veggies for my meals with some protein and very few carbs.  If I try to go without carbs, I feel sad.....haha.

    • Posted

      Dear Debbie, it is worth having a good diet for everyone with and without PMR. It has been shown that sugary diets can lead to diabetes which is even more likely if we are on steroids.
    • Posted

      No need to apologise - after all the years on the forums I know how difficult it is for many people to change the habits of a lifetime. I struggle too - but the nasty truth is we have a new normal however you want to look at it and a few more tweaks makes it better in the long run. 

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