SED Rate Graph shows ups and downs

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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

    Hi, Debbie

      I’ve been on prednisone since July, 2017.  I was diagnosed by my family doctor and he too was reluctant to give me a large dose. Completely understandable given the nastiness of it, but the horrific pain in my upper arms, hips and front of my thighs was more than I could bear.  Since Prednisone is the only thing that will relieve PMR pain, what else are we supposed to do? It want long until I had a Rheumatologist. He is amazing! He immediately started me on 80mg. Almost overnight my pain was completely gone. Yes, I have a severe moon face, my hair is falling out,  I’ve gained 60lbs, and for awhile I had trouble sleeping, but I was pain free.  I’ve tapered down to 7.5mg and my pain exploded again, so back up I went! I go back up to 20mg until the pain subsides again. It’s been a yo-yo situation for the past few months.  Since I also have GCA, My Rheumatologist is very mindful of my symptoms. Last month he decided to start me on a biologic injection once a week. “Actemra” it helps with the dangerous aspect of this awful disease. Starting tomorrow I taper down to 10mg of prednisone. My fingers are crossed that I’ll be able to manage.

     Ask your doctor to refer you to a Rheumatologist. I adore mine.

     Best of luck to you♥️

     

    • Posted

      Hi Kathy, Wow! It's so hard to comprehend the variance of dosages for prednisone. 80mg seems very high to me, but if that's what it took to get your pmr under control....I'm happy that worked! Be very careful of your tapering down. I went from 16.5mg to 15, and within 2 days I had excruciating pain in my shoulder (literally couldn't move my arm!). However, I also think I may be super sensitive to steroids.

      I feel for your side effects as I've had Many of my own. I think we all do!

      Please keep us posted...we're all in this together!

    • Posted

      80mg would never be used for "just" PMR - it is the dose used to start for many patients with GCA because the inflammation with that puts your vision at risk if it is slowing the blood flow to the optic nerve. So a very high dose - and sometimes even higher than 80mg - is used in attempt to reduce the swelling in the arteries as quickly as possible. 

    • Posted

      Hi, Lynda

       Yes, 80mg is extremely large, but I was suffering the dangerous symptoms of GCA. Having a stroke or losing my sight was a very real threat. I was only on that dose for a few days as a “pulse dose”

        Once my temple stopped  throbbing, the dose dropped in half. I was on the 40mg  for ten days, then dropped to 20mg.  Once I was at 15mg, I was stabilized.  Getting down from 15mg has proven to be difficult. I have only one adrenal gland, so when I taper below 15mg, my lone adrenal gland has a very difficult time trying to balance.

       Now I hat I’ve been on the Actemra injection once a week, for a month, I tapered to 7.5mg of prednisone and here I sit in a horrendous flare.  Tomorrow I will go back up to 15mg and wait another month.😔

    • Posted

      Thank you Kathy for your Very understandable and sensitive reply to my post. I apologize. It seems I overlooked the fact you had GCA in addition to pmr. That certainly explains the high dosage of prednisone!

      I'm also sorry to hear of all the problems you've had with prednisone side effects. Have you noticed any improvement since you started your taper or is it still WAY to early? I'm beginning to think 15mg may be the "magic number" for many people,(myself included), as it seems that's often when symptoms start to return!😢 Best wishes to you and please keep us informed!

  • Posted

    I was in terrible pain in all my muscles including my back.  All caused by the PMR.   I was diagnosed in the hospital and put on 30mg with very high SED rates.  Stayed there for 6 weeks, then reduced to 25 for a month and reduced slowly from there.  If you still have pain, you shouldn't be reducing.

  • Posted

    I think you need a different doctor who has a better idea of what they are doing. If your sed rate was 64 that was actually pretty high, 45 is still pretty high. No wonder you feel crummy - you still have rampant inflammation that is just slowly being relieved by the pred. You probably needed to start at 25mg (the top level for staritng dose in PMR according to the international recommendations:

    https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

    Unmanaged inflammation in your body is also doing damage - and the need for more pred is balanced by that.

    And does she mean you have to stop pred altogether after 3 months at 20mg? Because THAT would be medical negligence in my book.

  • Posted

    Is your doctor worried because you have been on pred at 20mg for over six months? Or have I misunderstood? Your SED rate is quite high but more importantly is how you feel. I have a very high SED rate all the time and feel fine, so I ignore the SED rate. Going down 1mg a month sounds fine. Stop if you start to get pain. Then reduce when you feel comfortable. 
    • Posted

      I've been on Pred. for years now, up and down.  I keep getting flares that send me up the scale and the dr is now unsure if I really have PMR.  I've taken one test after another, all OK,, except the SED and CRP ones are high.  Who knows.  Days I feel like I may die pretty soon.  Other days I feel almost normal inside.

       

    • Posted

      Could someone explain to me what a normal SED andCRP rate are supposed to be? I keep reading about everyone's rates being high, and it doesn't make sense to me as I don't know what the norm's are. Also, are blood tests and how you react to pred. (along w/your initial complaints) the mainstay in how doc's deduce if you do, indeed indeed have pmr??

    • Posted

      On the printout I get with my test results it says normal CRP should be 0 to 5 and ESR 0 to 20. I think as you get older normal increases a little, so these figures may vary slightly.

      To diagnose PMR doctors really have to discount everything else it might be such as rheumatoid arthritis for example. There is not really a straightforward diagnosis, but after discounting other things and the patient has bilateral pain in shoulders and/or hips and has an extremely good reaction to 12.5mg to 25mg of pred fairly quickly, the chances are it is PMR. 

    • Posted

      Thank you so much! That helps alot. I actually don't know what my rates were, I was only told they were high. I go in 4 new blood work on Wed. which now I will be sure to ask about. As I've said before, I had an amazingly quick response to pred.--within hours of my 1st dosage! I've been virtually pain free for a few months (except when I started to taper, then got excruciating pain in my shoulder in 2 days! The only thing I'm somewhat confused about is my pain seemed to be mostly in my hands, fingers, wrists, forearms and one shoulder. Any input will be greatly appreciated!

    • Posted

      I had a lot of hand and forearm pain - if there is also swelling it may be something called RS3PE syndrome which is often found alongside PMR and also responds to moderate dose pred. But it does vary from person to person. It is normally bilateral but may start in one hip or shoulder considerably before it appears in the other. It isn't unusual for patients to be diagnosed with a frozen shoulder when it is really PMR.

  • Posted

    DebbieHurts, haven't you posted in the past about difficulties getting a definitive diagnosis?  Has your doctor finally ruled out everything else and agreed you have PMR?  In which case she should be prepared to treat it correctly, with the right amount of pred to stop the inflammation from building up and reduce your pain by no less than 70%, hopefully even more effectively.  Then sufficient pred should be prescribed to allow you to taper very slowly so your pain doesn't flare up again.  Flares caused by too rapid tapering, or in too big steps, lead to a higher lifetime intake of pred, so it's counterproductive to taper too quickly and too soon.  

    Good Luck! 🍀

    • Posted

      You put it very succinctly.  I think I'll print out your message to show her.  No, she still doesn't believe it is PMR.  Her reasons are: I've had it too long; my SED rate doesn't go down far enough with 20mg; and my ankles are swollen, meaning what, I don't know.  The swelling went down a bit with the increase in Pred this past month.  Anyway, she hates for me to be on pred.  I've had two fractures in my back, which she associates with the pred.  Plus I've gained way way too much weight, 300 pounds.  I don't know what will happen next.

    • Posted

      Better doctor - the "too long" is a red herring and she needs to get up-to-date:

      https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

      Your sed rate isn't going down enough because at 300 lbs it probably isn't enough - the range is 12.5-25mg/day in the latest recommendations and a study found there is a relationship between response and weight. And the overweight also causes inflammation - and may be stopping the sed rate falling.

      Maybe she does hate you being on pred, maybe it is the problem with the fractures, or maybe it isn't. but there are ways of dealing with that and leaving you in pain and restricted in movement doesn't help either. It isn't her pain and I would tell her that - if it isn't PMR, then she needs to work out what it is. If you presented with the same symptoms but weighed only 120lbs - what would she diagnose then?

      You CAN lose weight while on pred - cutting carbs drastically does work for most people.

    • Posted

      Has your doctor suggested what it could be? If you are in pain surely she wants to help and should not just be negative. Are you saying the pred caused you to put on 300 pounds or it got you up to 300 pounds? That is an awful increase in weight to have to cope with. 
    • Posted

      Yes, I was wondering the same thing about weight. Is this a 300lb gain or your present weight? If it's a Gain, then in my humble opinion that needs to be addressed asap!

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