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Just come off of prednisone after 16 months. This my second flare up

Posted , 4 users are following.

deliceclem
deliceclem

I first had  PR about 7 years ago my legs ceased up and it was painful walking. My GP was good recognised the problem and started me off on prednisone. The latest flare up was completely different and I didn't recognise it as the same problem. I was unwell tired with headaches daily my dr took bloods which showed an esr of 137. Worryingly I started to get a shade over my right eye which I now know to be one of the symptoms of GCA. I was immediately out on a high dose of prednisone which I have now just come off. I think the problem is you get used to no aches and pains so it is a struggle to get back to what you are like at 65 which is my age and get used to the everyday aches and pains. I do worry about flare ups.

0 likes, 6 replies

6 Replies

  • old_nanna
    old_nanna deliceclem

    Posted

    well i wrote a reply and then had to kill the pages , my laptop is playing up , but i also have had this polymi. 2 years , broke down the prednisone very slowly , from 1 mg , i stayed on that for a couple of months , then 1/2 , a bit the same length of time ,1/4  for a couple of weeks ,then every 2 nd day for a week , and now im off it completely , i will get a blood test in a week or two  , just wondering how did you come down off the stuff , its important to come down slowly , and im 85 too lol you can always go back on the prednisone but come down slow and long , good luck , im trying to build up my imune system  and think its my healthy eating that has got me through this too so again i hope your better soon too 
    • deliceclem
      deliceclem old_nanna

      Posted

      Thanks my dr gave me a chart to follow say you are on 10 mgs reducing to 9.

      10 9 10 10 9 10 10

      9 10 9 10 9 10 9

      10 9 9 10 9 9 10

      9 10 9 9 10 9 9

      9 9 9 9 9 9 9

      it didn't seem too difficult. I had and still have regular blood tests to make sure all is ok.

      good luck with yours

  • MrsO-UK_Surrey
    MrsO-UK_Surrey deliceclem

    Posted

    As you say you came off Prednisone after just 16 months the first time and following your latest "flare" you have now reduced from a high dose to zero, I'm wondering if you have reduced and come off steroids too quickly each time.  That is the main reason for the illness returning and flaring.  More and more patients are finding that the only way to reduce is slowly slowly in order to achieve long term control of the inflammation and keep it at bay.
    • deliceclem
      deliceclem MrsO-UK_Surrey

      Posted

      Many thanks for your input it didn't feel quick I followed my doctors advice. It isn't until you start taking to people you realise there are a lot of sufferers about with PR. 
    • old_nanna
      old_nanna deliceclem

      Posted

      yes ,i usually delete a lot now , i couldnt believe just how many people hasystem up xxcare , build your imune ed on enough , lol just take e ravcase of tell someone who cares hay lol im ok im on face book i do my banking on line aqnd have wonderful kids , x ok i havlol anyway ,everyone still puts a lot down to my OLD AGE , i just w2ont accept that lol ,,, but no iam old and the brain shrinks and short memory , but i also found the blood doesnt get to aqll parts of my brain , hence the un balance , ,,, but i know lol its a ve thie polym. im also in t5he group that has epilepsy , im not on medication (i got too many side affects ) i dont black out aqnd it just takes 2 days to get over the TURNS , i dont know anyone who has my sort of turns either but its arround 
  • old_nanna
    old_nanna deliceclem

    Posted

    dont you hate it when you look up and you have written all over what you have , its probably all my fault , or the mouse ,lol sorry , i cant retrieve and fix it up now , i will try again later , its 10 am in queensland , lol good luck out there 
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