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What the dr said abt reduction of pred

Posted , 13 users are following.

DebbieHurts
DebbieHurts

I went to the rheumatologist a couple days ago, and he was desperate for me to reduce the steroid.  "I don't want to shorten your life," he said.  He said he had to be very stern with me.  His reduction is to go from 19 that I was taking to 17.5 for 2 weeks, then 15 for two weeks, then 12.5, then 10 before seeing him again.  He told me to go to the pain dr for more relief, since he thinks maybe my pain is not just Pmr but chronic pain.  But then he shook his head and said, "But your SED is a little high at 32."  Last time it was 35.  Then he put a cortisone shot in each shoulder, which hasn't helped too much, as I am now feeling that old firey pain coming back to arms and ankles.  I want to get well so much!  I know you all do, too!

2 likes, 16 replies

16 Replies

  • misdiagnose
    misdiagnose DebbieHurts

    Posted

    My GP did the same. She totally ignored the blood test results showing inflammation and totally ignored me stating I had painful and disabling symptoms. This is very bad practise! In fact, it is bullying behaviour. Take someone with you. Put your symptoms in writing. Record your consultation. Ask for a second opinion. Tell your doctor: if I don't have sufficient prednisolone, I can relapse, and this will require an even higher dose!

    What is your diagnosis Debbie? Steroid into the joints is usually for frozen shoulder. Painful? I have heard it is. If you have PMR, you need prednisolone. A rapid reduction might cause a flare. A flare is not your fault, it is the fault of too speedy reduction of prednisolone and pushes you into discomfort, pain and disability once again. Have you had a diagnosis for the ankle pain. Maybe what you need is a rub on anti-inflammatory that you can buy from the chemist. Many people with aching mucles and joints use this.

     

  • tina-uk_cwall
    tina-uk_cwall DebbieHurts

    Posted

    Hi Debbie, I believe your rheumatologist is reducing you too fast. The reduction doses do work, they worked for me although I started on 15mgs not 20mgs. However, my rheumatologist had me on each dose for 6 weeks as per the Bristol PMR plan and I was ok until I suffered a flare attempting to reduce from 9to 8mgs.

    he says that you have multiple pain conditions which may be true, however, the only medication to relieve PMR pain is preds, so maybe the pain clinic will help you out with other medication for your non related PMR pain, but as I say only preds will help with the PMR pain.

    how long have you been on preds and what was the starting dose. Also have you seen a real reduction in pain since starting preds? Regards, christina 

  • constance.de
    constance.de DebbieHurts

    Posted

    These rheumatologists!!!!   The daft thing is if someone has RA they are on Pred for years, if not for life!!!!  How do they deal with that one?  Nefret has been on Pred for years, and will probably be on it for life.

    Sorry you are still suffering so much.  But you know 32 isn't that bad.  I started at 132 - that was 3+ years ago - and I'm not dead yet!

    Of course we all have our bad days, and we all want to get well asap - and you know, we all DO in the end!  Take heart.  Try to be happy.

    Regards and best wishes from Constance. 💐

  • pam7653
    pam7653 DebbieHurts

    Posted

    If you read some of the earlier posts most of us stay on Pred for 6 wk intervals. I took 15mg for 6wks, then 12.5 for 6 wks and so on. Your sed rate is still

    high. What's his rush? Also what's with the shots?

    I don't react well to shots, I usually feel worse. Perhaps a new doctor is in order. More tests taken to rule out other problems. Seems like he's guessing and unsure to me.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada DebbieHurts

    Posted

    Hi Debbie,

    I went to my rhuemy this week as well and he is concerned that I have been on prednisone for so long (2 1/2  years) and at a higher dose since January (only 10mg, 9mg and now trying 8mg) due to a flare.  His concern seems more related to bone loss than anything else and he said he would like me to take Paquinal (sp??) as a prednisone "sparer" and also Fosomax (sp??) for the bone loss.  I declined both and told him I would see how my reduction goes over the next 6 months.  He's sort of OK with that.  I also told him I hadn't had a DEXA scan to see how my bones were doing on the prednisone but that I would have one and if it shows that I have significant bone loss I'll take something at that point.  I do take lots of calcium, Vit D and magnesium regularly. 

    The reduction plan your Dr. has suggested is to fast and it's obvious he doesn't really  understand PMR.  You might want to send him the Bristol paper and other info you can get from the NE website.  With every flare you have a more difficult time decreasing so it's important that you go slow and easy. 

    I had successfully decreased to 4mg, stayed there for months and felt great.  Tried to reduce to 3 1/2mg on the DSNS plan and in the 3rd week had a bad flare. I went back to 4mg, then 5mg and finally 10mg before I got relief.  Have been able to get to 9mg and was OK except for extreme fatigue many days.  Started 8mg this week and even just one day at that does has had an affect on me.  I'll be going very, very slowly.  I think I have become more sensitive to decreasing and don't want to take any chances on having yet another flare.

    I hope you can sort things out with your rhuemy but if you can't I'd see if I can find someone that knows more about PMR.  Maybe some of the other members can suggest one in your area.  I am in Canada so that won't help you muchsmile

    Hugs,  Diana

    • GM70
      GM70 Mrs.Mac-Canada

      Posted

      Could you please tell me what the DSNS plan is. I am following Eileen's very slow reduction plan which I believe to be like the Bristol plan and then I stay on my reduced dose for a month to make sure I'm ok before I go down further. I have successfully reduced to 12 from 15 and I am just about to go slowly to 11. I try and follow the posts regularly but just haven't seen DSNS mentioned before. Also could someone please advice about bloods. On my last test my ESR was within normal range but my CRP was double what it should be. It was 20 and I understand it should be 10. Should I be worried about this. My GP seems to think I doing OK.
    • Mrs.Mac-Canada
      Mrs.Mac-Canada GM70

      Posted

      Hi,

      Sorry, the Dead Slow Nearly Stop method is Eileen's plan.  There is a general rule that you don't reduce more than 10% at a time but when you get to 10mg the Bristol plan even says to stay there for a year and by doing that the chances of having a flare are greatly reduced.  Most of us are too impatient to do that so use Eileens plan once we get to 10mg or sometimes at 8mg (where your adrenals have to start kicking in again).

      I'm sorry, I don't know about blood levels as I don't have them checked often.  I think most people will know by their symptoms if the prednisone is managing the inflammation but there are many on this forum that use their counts to determine if they should be decreasing their pred or not.

      I also don't think 20 is really high.  I know that when I started out mine was 64.

      Someone more knowledgable than me will be along to give you more info on that.

      Don't worry.... PMR hates it when you worrysmile.  You'll be fine.  Just read as much as you can from the discussions and you'll learn alot that will ease your mind.

      Hugs,  Diana

    • GM70
      GM70 Mrs.Mac-Canada

      Posted

      Thanks for replying. I have been fine, so far, following Eileen's method and I have read the Bristol study for GP's and I gave it to my GP and he has been really good. I plan to stay at 10mg for twelve months, when I get there. I am determined not to be impatient as I went from 15 to 12.5 at the beginning on my doctor's advice and was really poorly and don't want to feel like that again. Since he read the Bristol plan he has been really good. I know it is going to be a long journey. Thanks again.
  • Guest
    Guest DebbieHurts

    Posted

    From lots of reading, the normal sed rate for men is between 0-15 and for women 0-20. Any # above that is out of the normal range. Inflammation is our enemy since it impedes blood flow period. The CRP # also shows inflammation..,must watch carefully and adjust steroid based on blood work results or I missing something? Nap time! Ann11195
    • lodgerUK_NE
      lodgerUK_NE Guest

      Posted

      Just in case, the 'normal'  crp rate and esr rate, depends on which hospital trust area you are in and what scale they use.  It varies.

      Also some people's ESR and CRP rate never show any movement at all.

      Both are just guidelines to alert medics, something is going on.

  • LayneTX
    LayneTX DebbieHurts

    Posted

    My taper was same as Debbie.  

    I've always still been in pain since off Pred 20 mg, SED was 80, but dropped fast to 6 maybe 4-6 weeks later (trying to see my notes), but as Mrs. O said I think...70% better is a normal feeling to live with...afternoons I feel 50% better.

    so...the curious question is...what amount of pain to put up with or is considered "normal" for PMR which allows us to taper???

    does that question make sense?  I'm wondering if those who are tapering and still feel pain, is it the 100% that made us want to scream, cry outloud, yell, not be able to get out of bed, roll over, ... Or is it the pain that just makes us depressed, tired, struggle,mbut can give someone a smile if need be???

    I'm understanding from this forum that a flare is 100%.

     

    • misdiagnose
      misdiagnose LayneTX

      Posted

      You can ask to see your notes, usually about £10. Your entire history can be photocopied for you for £50.
    • EileenH
      EileenH LayneTX

      Posted

      When you are on the first highest dose after diagnosis you should remain there for at least several weeks until the symptoms have resolved as much as they are going to. Then you start to reduce in small steps to identify the lowest dose that will give you the same result. There should be at least a global 70% improvement in your symptoms if it is PMR - so that doesn't mean pain-free, it means that much less pain and stiffness. If you have synovitis and/or tendonitis it will take a lot longer for the pain to resolve - it may never do so entirely. It also means that if the improvement is only 20% you have to question whether this is just PMR, or even PMR at all. Late or elderly onset RA can present in an identical manner - it doesn't respond anything like as well to pred alone.

      The primary cause of flares is recognised in the medical literature as reducing too fast or too far - when you reduce in big steps you are likely to miss the desired end-point: the lowest dose that manages the symptoms acceptably, and overshoot. If you reduce in big steps you are also very likely to suffer from withdrawal pain - and that often manifests as the same symptoms you were taking the pred for in the first place. How do you tell which it is? Not that difficult by reducing in tiny steps and being sure you were fine at the new lower dose before going further.

      Reducing in big chunks gets no-one anywhere - the patient is in pain and the doctor is mislead as to the cause. If you can get the pain under control to start with you then look for a much lower dose to get the same effect - and by reducing very slowly many people have got down to single figures with few problems where previously they got stuck at about 10mg.

  • DebbieHurts
    DebbieHurts

    Posted

    LayneTX, that's a good point.  I know right now I have discomfort, but not too awful.  But when I had a flare, my legs felt like they were encased in heavy metal that I could hardly move for the pain.

    Misdiagnose, fibromyalgia came first, then osteoarthritis in joints, then the strange pain of what turned out to be PMR, a very different pain from the first two.  I believe the firey pain in my shoulders and down my arms is PMR, and the dr. gave me shots there to see if it would help while I reduce the pills.  So far, I think it did help a little.

    christina, I did see a radical improvement the first time I took the preds.  Oh, I was so NORMAL I couldn't believe it!  I think it was a big dose of 60 that first time, and right away had to go down to 20.  That was a year and a half ago, and I've been up and down, up and down, but never so wonderful as that first two weeks.

    Thank you all.

  • patricia59727
    patricia59727 DebbieHurts

    Posted

    Hi Debbiehurts after getting down to 8mg of Pred and trying to stick there for 6 weeks because I am realy over weight,ended up on 40mg of Pred,Think am Learning now the Pain I get from taking Pred is a lot more Bearable than the Pain from PMR-GCA which is more of a Burning Pain,But Hay Ho just went shopping for Clothes to suit my fuller figure.
    • DebbieHurts
      DebbieHurts patricia59727

      Posted

      Ha patricia, that's what I need to do, clothewise!  Thanks for your experience.  That's what happened to me, too, except I went up to 20. 40 might have been cool.  I've been on 17.5 now for a week.  I can tell, but not too bad.
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