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PMR catches me out again.

Posted , 12 users are following.

BillyP
BillyP

After a king sized flare 18 months ago, i have got down to a 6.5 MG dose of pred , using the DSNS,but modified to one quarter Mg per month. Then things went pearshape. and i was not feeling too good at all, thinking that PMR was returning, but mindful of once under 7Mg daily i am into the zone where the adrenal glands may be kicking in. With a back problem and torn ligaments in both shoulders , this can mask my PMR signals, also our summer has been really hot and humid , so all this sort of put me off course. Any way i went to see my GP to get a referral to see my rheumy. Told her my symptoms and straightaway she said that is not PMR , it is pred withdrawl , up your dose to 8Mg and come back in a week . I mentioned an adrenal test and she said too complicated. ( i dont know)....... She did say because i have been on pred for so many years that the glands may or may not kick in so just stay on 7Mg for a couple of months then slowly drop, but go back up if necessary, She didnt seem to think at my age (81) ,staying on 7Mg for ever was going to be a problem. just have a bone density test occasionally. So there you go, my first pred withdrawl problem, my symptoms have gone and i am back on track again. ............ i hope !!!

0 likes, 18 replies

18 Replies

  • BillyP
    BillyP

    Posted

    One thing i did forget, was, i had to get a blood test, just to see if any thing else was amiss ..........

    • BillyP
      BillyP Michdonn

      Posted

      GDay Michdonn, A general blood test that covers most common things. ESR was7.CRP was 10 .I think that was it.( to be truthful i dont really understand the result report. the doc just said the PMR bits were within limits. I should have learnt more about the blood figures over the years, but thats the way the mop flops.

      Yeah , exercise is a must if you dont want to sieze up. I ride a pushy about 50 Ks three or four times a week on average and i like that. Yeah, all the best..............

    • Michdonn
      Michdonn BillyP

      Posted

      Hi BillyP, the standard blood test CRP & ESR will show if you have inflammation. I had both test about a month ago. Both were high, the rheumy was upset. I told her PMR was fine I fell on my cellphone, hurt my ribs. My wife bought me a watch that I can talk on, no more falling on my cellphone. I normally ride a road bike 20 to 30 miles 3 or 4 times a week after ski season. I also been thinking of taking a senior class at the YMCA after ski season. Hard to stay in shape when you keep hurting yourself.

      Good luck on rest of your PMR journey stay positive, active and try to smile. 🙂

    • Michdonn
      Michdonn Silver49

      Posted

      Silver49, some days I really don't feel like an inspiration, more like a klutz. I have fallen on my cellphone skiing and always end up hurting my ribs. Thank God my wife bought me a watch to talk on. Now I leave my cellphone in the lodge most of the time. The ski hill Pajarito Mtn only open for a couple of more weekends. It getting warm here. Hang in there Silver49, good sailing on the rest of your journey. 🙂

    • Silver49
      Silver49 Michdonn

      Posted

      Thank you, Michdonn. I need to take a leaf out of your book. At least you're moving and exercising when you fall. That's something to be proud of though better if you don't fall and hurt your ribs. Enjoy the last of the season.

    • Michdonn
      Michdonn Silver49

      Posted

      Thank you Silver49, few more weeks of skiing and back on the bike. The is already getting warm here the mountains of NM. 🙂

    • RD_Swede
      RD_Swede Michdonn

      Posted

      Like you I am 81 and I envy you being able to ski. My wife tore a ligament several years ago while skiing, and after that we haven´t gone skiing. I have been free from pred more than 10 years but have a foot problem in my right foot that makes it hard to walk without pain. Just had a health checkup and everything was very good. I attend a so-called circle training in a gym. We have 10 stations and are up to 10 older persons and after 2 minutes, we go to the next station. After 30 min we take a brake and drink some water. It feels very good.

      Greetings from Sweden - Ragnar

  • EileenH
    EileenH BillyP

    Posted

    What a sensible doctor you have!!!

    Just one point though - the PMR has never gone away. You have been on enough pred to manage the symptoms until you got to 7mg. When you went lower there was some inflammation left over each day and it built up until there was enough to cause symptoms.

    I would be doubtful it is adrenal problems - and the test will really be the next time you try to get below 7mg. There is no point in doing a synacthen test until you manage to get to 5mg, preferably lower. And if she is happy with you at 7mg - accept that gratefully - I would!!

    • BillyP
      BillyP EileenH

      Posted

      Gday Eileen. Yep she is good,but.......took a fair bit to train her initially about PMR . I think she has put in a fair amount of homework on the subject since , Yep, i hear what you say ,,,Thanks.....

  • Michdonn
    Michdonn BillyP

    Posted

    BillyP, I am a 81 year old, had a bad flare increased from 5 to 20mg, 4 days on 20mg stabilized, felt good. Decreased in 4 day 5 mg steps to 5mg in 12 days. I will stay at 5mg till ski season is over then continue decreasing in half mg steps using a modified 38 day DSNS. Today I am having a second rest day in a very busy schedule.

    Try an stay active, positive with a smile. 🙂

    • missmagwumps
      missmagwumps Michdonn

      Posted

      Michdonn - now that did bring a smile to my face !!!

      You say...."I am 81.....I will stay at 5mg until Ski season is over......." 81 with PMR or needing to take Pred and still ski-ing ....remarkable....xxx

    • BettyE
      BettyE missmagwumps

      Posted

      Age is just a number. I'm going to be 87 next month and have eight years of PMR behind me. So far, so good. Zero pred. for almost six years now.

      My muscles and stamina are not what they were ten yeas ago and I do have to remind myself that that is probably inevitable but as long as I'm sensible ( family laughter in background ) and don't push too hard I can still do most of the things I enjoy. One of the advantages of old age is that we can give everything more time.

    • Michdonn
      Michdonn missmagwumps

      Posted

      missmagwump, I believe that a smile helps me to keep going. Yes, I am 81 years old with PMR for about three years. I take 5 mg prednisone to control my .inflammation. And will start my taper again when ski season is over and my actively slows down. I do not think it is remarkably. Couple of years ago when I could not walk, the help I got on this forum to get going, get moving; that was remarkable . Smiling 🙂

    • Michdonn
      Michdonn BettyE

      Posted

      I agree BettyE, age is just a number, I may have to rest more, but I am still instructing and skiing with a smile. 🙂

    • margaret22251
      margaret22251 Michdonn

      Posted

      Well Michdonn i love your outlook on life , and i love to hear your news.

    • Michdonn
      Michdonn margaret22251

      Posted

      Thanks Margaret22, enjoying the winter the snow has been great, was a little late getting started, a flare, but right back doing what I love to do ! Skiing with a smile 🙂

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