Hurrah- at Zero!

Have finally got to zero Pred.! Decided not to take the last couple of tablets last week - 1/2 mg per day - as I was feeling so good. Have continued to feel well and hope that my PMR has finally gone ( but not forgotten!!!). It started in April 2012, was not treated with Pred until Dec 2012 so I'd been on it for almost 3 years. Felt really ill at times along the way, tired, lacking in energy, faint,dizzy, found it hard to get up in the mornings etc etc. Had several setbacks and had to stick at doses for periods to stabilise, had to increase a couple of times too which was upsetting but necessary.

Now feeling "normal" . I have said thank you for support before, but am saying it again as you all helped me so much.

Hopefully my post will give hope to others who are still suffering - don't give up hope of getting better. It may take longer than you want it to but it is possible.

29 Replies

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  • Suzie, you must be thrilled. Some people say that they suddenly feel that the PMR has gone away, did you get this feeling at any point?

  • Yes, I started to feel it had gone about a month ago whilst still on the pred ( 1 mg some days, 1/2 mg others) I used the very slow method of reducing throughout

  • I met someone in the changing rooms at the swimming pool and her mother had had PMR when she was 68 years old. Apparently it just arrived overnight, then two years later she said she suddenly felt it had gone away again.

  • Hi Suzie and a very big welcome to the Zero Club! It's the most wonderful feeling isn't it - a sort of feeling of freedom. After 3 years of being Pred-free, I still get out of bed every morning feeling so blessed to be able to move freely. Your post is going to be such a morale boost for others.. Stay well and enjoy your new-found freedom!

  • How Wondeful! Take it Steady!

    And, Keep Well xx

  • So pleased for you and hope you will continue to feel so well. It is such an encouragement to those of us who are on the beginning of our journey. All the best wishes to you. x Jackie

  • Hi Suzieh Its so great to hear your story. It is a difficult journey so congratulations and stay "normal" xx

  • Well done Suziah I am down to 3.5 and keeping my fingers crossed good luck to everyone.

  • That's fantastic to read Suzie. Congratulations, you give hope to us all. Clearly, patience has been rewarded!

  • Very interested to know that you feel so well after stopping Pred. You are one of the lucky ones, because I stopped one year ago and still have not recovered fully. I still have pains and stiffness and unable to walk more than a few yards. Hope you continue to feel well but I was told that it sometimes takes a year or more to recover fully.

  • Sorry to hear you still have pain. My blood tests did show the inflammation had gone- do yours? Maybe see Dr again? No one should have to feel pain and stiffness every day. Hope you feel better soon

  • Well done I am so happy for you,gives us all hope that one day we will be there to.Keep well.xx

  • Congratulations, would be interested to know how long you took 10mg for, I have been on 10 since February, never seen a Doc since then, just keep taking the pills, I am thinking of starting to reduce soon, the slow way. Keep Healthy, given me some hope.

  • Daisy, it may be a good idea to have your blood markers checked before reducing although if you feel OK you could probably start to reduce. I have been having blood checks every month but am now going for every three months. I have not seen my GP since last October but have spoken to her on the phone. I think if my blood markers are OK and I feel OK she thinks that is fine.

  • Thanks Piglette

    My Doc doesn't seem that interested, I was diagnosed last September my GP went on maternity leave and the new one has never recalled me and I just keep getting repeat prescriptions , maybe I should go back for another blood test ...thanks for your reply

  • I must admit my GP is not very interested either. I have not actually seen her since last October although I have talked to her on the phone in May. I just book my blood tests when I feel I should have them, but probably it is a good idea to give your GP a phone and ask if it is OK.

  • I think Piglette is right- only reduce after having a blood check, and then only if you feel ok. I was on 10mg for a couple of months but did try to reduce very slowly after this using the very slow method. I stopped if I felt pains returning, and then stabilised for a while before reducing again. I think you should have your blood checked then if Dr says ok start your reduction..... Slowly!

  • Thanks Suzieh, will go back to the docs

  • I agree, I think a blood test every 4 months is important! I am at 4-5 praying it won't be another rough ride. Was down to 2 felt great for months but at 1, all the pain and felt horrible so went back to 5, up and down since then, I gave had it for yrs but my blood work is always fine!

  • Well done. nice to hear of some one getting to the Big Zero.I dont want to put a damper on your parade, but try to take things steady for a while.Best Wishes for your new lease of life.Dave.

  • Thanks Dave, also trying Gluten free at present - feeling good so far

    Have been looking at the other support group "gluten free guerillas " thanks for that info- very interesting. Have asked Dr today to have a blood test to ascertain intolerance? Yes I can, but have to eat at least one portion of gluten every day for 6 weeks before the test. Am going to do this ( only one thing though) to get an accurate result! I know I can tolerate a little without bad effects

  • Evening suzieh. glad to see things are going well for you,as we all know pmrgca journey can have all sorts of problems & set backs so it is good to hear when people are getting good input from good Drs etc. have you looked on gluten free guerillas , for the tests for Gluten apart from bloods. just to add if you are going back onto gluten spoil your self with stuff that tastes yacky gluten free. my choice would be Fresh Brown Seeded Bread. best wishes. Dave

  • Comgatulations Suzie! Wonderful news to see those of us dropping dosages. And those who are so challenged, hope and thoughts are w/ you.

    From 60mg in March on hospitalization 4 days to get GCA (biopsy positive) am at 2.5. Reduced from 10mg by 10% increments at least 4 weeks on each drop. Next drop 2 weeks. I cheat by in March started gluten-free and dairy-free on advice of pharmacist friend/nutritionist. Lost 10 pounds and have remained at that weight without trying too hard, no moon face. But all the other side effects have been with me but alleviating little by little. Good luck to you Suzie and to everyone with GCA/PMR and anyone on pred! Pred is like falling off a boat, someone please throw me a life ring. "but it has maggots, bees, and biting ants on it" - just please throw it!!!

  • Interesting to hear about gluten/ dairy free info. See my reply to Dave!

    I have been gluten free for 2 weeks and feel well

  • Congratulations Suzieh. I have a long way to go, but it's so motivating to read of your success, and know that it CAN be done.

  • Wow that is amazing well done, sounds like you have traveled a tough road , its amazing and inspiring to hear your great news. All the best for the future, enjoy have fun x

  • Suzieh, wondering if you took supplements during your time on Pred. Have always taken certain ones, but while working through GCA flare and Pred I have taken D-3, Krill Oil, Cal-Mag-Zinc, some B's and a multidophilus religiously. Pharmacist advised not to take supplements the same time as Pred, which I took in the mornings.

    After reading more posts today going to stick with the 2.5 longer than 4 weeks and then do 10% drop and then 10% and then . . . thank goodness for pill cutters, not sure how to cut the lower drops but will figure it out. Your post means a lot to many of us. This forum has been more to me than my physician, I know what to ask for and what to expect. Thanks to everyone.

  • A sharp knife is the best way to cut pills...you lose a few but hey? Use the good ones. Yes I took multi vits and vit c every day, couple of times a week omega 3 and vit D. Daily pro biotic yogurt too. Always eat lots of veg. And some fruit. Restrict carbs where I can. Currently trying Gluten free but Dr says I need to eat one portion of gluten food each day for 6 weeks before she can get an accurate reading for blood test to see if I am " intolerant " to gluten . Starting tomorrow on this. I've been gluten free for 2 weeks and feeling better. ( is it this or lack of Pred?)

  • Acquaintance whom started gluten free eating month ago feels wonderful. She has no med/health issues. Friend with RA off Pred for 3 mos feels like a new person so likely a bit of both. Just keep feeling good!

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