UP AND DOWN?? GOOD OR BAD??

Posted , 12 users are following.

Hi everyone.

Most of you know all my health issues at the moment.

As far as the PMR goes, I've decided to turn to this forum for advice as I've just got TOO MANY DOCTORS, all with different info on what to do. So I'm asking the "experts" for opinions/advice!

As I've said a gazillion times, I've been trying to get off prednisone from almost the beginning. A few months ago, I was on 3.5mg and tapering. Then, my world imploded, and I started having alot more pain...(shoulders, knees, elbows,etc).

So with the advise of you'll, I went up 5mg until I saw my doc. a wk later. She wasn't happy with me and wanted me to start an immediate taper. it's NOT working. the last few days, I've started taking 4mg one day and 6mg the next....not as a taper, but something to do for awhile..???

anyway, has anyone else done this? is it a "dumb" thing to do?

sorry guy's....I know I'm pulling at straws......I'm just not coping well with my life as it is right now😕.

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  • Posted

    First of all, I am starting my fourth year of PMR and am currently reducing from 5 1/2 to 5 mgs for the first time. It will take me 35 days to completely take 5 mgs all week using the Dorset Lady's reducing plan. During my second year of PMR I took 6 mgs for one year with steroid shots in addition because of a knee replacement during that time. I had a flare after that because I no longer had the steroid shots, upped to 10 with a quick taper to 7 mgs where I stayed for many months. The following year I was hospitalized for a bleeding ulcer and after had another flare, went up to 15 mgs and dropped back to 8. I reduce in 1/2 mg segments using the 35 day plan and then stay there for a couple of months or until I feel it is safe to go lower.PMR has a lifetime of almost 6 (5.9) years before remission for many people. There is no point in reducing pred doses until PMR is ready to leave. Pred is your friend, the only medication that can relieve the pain.

  • Posted

    I wouldn't toggle by 2 mg.You are at such a low dose this is a very large percentage. You could try 5 or 6 mg for a week and see if that helps, then re-evaluate. I think if you do decide to carry on with alternating days it would be better to stick with .5 mg if you can cut your tablets.

    And I've just read somewhere today that the real experts on chronic illness are the patients. Trust your intuition.

    • Posted

      I should add that I have used the dead slow method and in order to get below 2 I've had to repeat each step of the taper. This means it takes about three months to reduce by .5 mg. But the thing is, it's working. Partly because I seem to be ready, but also because doing it so slowly is what I need to do.

    • Posted

      o.k.....I'm starting to get a couple of feedbacks that I'm not making a smart decision. I'm just so dang frustrated with everything right now. and what I seem to be getting from the doctor's is that my numbers are always going to be skewed due to lymphoma along with the PMR. Ughhhh

      it seems all I do lately is cry😢.

      I'm thinking I'll go back to 5mg and just stay put for awhile.

      thanks for your input.

    • Posted

      The numbers are meaningless anyway for many patients. Symptoms ALWAYS rule - and as I said, if 5mg pred helps your pain, where's her problem?

    • Posted

      I don't know, but I'm about to find out as I just put a call in to her!😕

    • Posted

      "The real experts on chronic illness are the patients."

      I really like that line. The more you think about it, the deeper the meaning.

      Sometimes I think how much I know about PMR (from this forum and one other) may be a little intimidating to my MD. I don't want to be intimidating... I want to be "repaired."

    • Posted

      I've just found a report on medscape which says glucocorticoids 5 mg and lower are generally safe for long term treatment.

  • Posted

    I also follow the dead slow method. However, sometimes if I feel I will be doing something very stressful, or really exerting myself, or I feel pain ratcheting up a bit, then I might up it by .5 mg for that day or two, then drop back to the lower dose. I am currently at 5 mg. prednisone split into taking 3 in the morning and 2 at night just before bed. Usually that is the most I vary between a dose when at the low range of dosage. By trial and error I have found that works for me. You can get the 1 mg size pills and cut them in half. My rheumy checks my blood levels regularly and is happy the readings are fine. Good luck!

  • Posted

    Hello Linda....... i am in my fourth year with PMR, and I manage it myself. GP writes prescriptions when needed.I am currently tapering from 4.5mg to 4mg with the DSNS method. It is all positive at the moment providing I take it slowly. I have over the last couple of years relapsed, and had to increase my doses. Good luck Linda.

  • Posted

    When I had a bad flair of PMR and GCA after being off prednisone for 3 monthsin 2018 I went back to 5 mg prednisone once daily on my own. My JOHNS HOPKINS DR AND MY UNC DRBI had me stay at that level for 8 months. Now on the advice of both DR's I am on ACTEMERA weekly and began tapering Prednisone very slowly. Down 1 mg per month and the first 5 days I alternate the dose. I have been on these 2 meds for 5 months and looking forward to getting off prednisone by the end of the year. I exercise moderately and try to keep the stress level down. SO GOOD SO FAR.

  • Posted

    You'd be much better doing 5mg every day - 6 to 4 is a big change day to day.

    Did 5mg help your pain and other symptoms? If so, where is the lady's problem? Why is she so determined to get you off pred? Quality of life should be the major aim at any point - and 5mg is a low and safe dose for longer periods.

    • Posted

      yes, I've already made that decision and started 5mg yesterday. I'm going to call her today.....not looking forward to that.....but I'm tired of messing around with this!

      right now, I've got Bigger fish to fry, i.e., my daughter (who's still in the hospital), and the lymphoma diagnosis.

    • Posted

      Is your daughter continuing to recover? You sure have a lot on your plate and I think we all agree that using a helpful dose of pred will be your best option. In your position I don't think I would even consider another taper for a few weeks. Hugs.

    • Posted

      thank you for asking Anhaga.....yes, my daughter is continuing to recover.

      it's been a VERY slow process tho'.

      she actually came home 2wks ago for a few hours visit, (lol.....she misses her dog!), but had to go back.

      she's just not physically (or emotionally) ready for the "real world" yet.

      her body's been thru hell and back.

      Ahhh, life! You gotta love it!😵

    • Posted

      That reminds me of when my father was in hospital after one of the crises during his final illness. Once he was out of ICU and in a private room my stepmother used to smuggle their (fortunately quite small) poodle in for illicit visits as often as she could.

    • Posted

      Lol, lol......I can TOTALLY relate to that!😁🐕

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