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catherine34621
catherine34621

I have been treated for gca since Nov.2015, I started on 40gms. of prednisolone and after ups and downs, elevated blood levels for what seems like forever, the lowest dose I reached was 15mgs.in May this year. I reduced by sometimes 10mgs other times by 5mgs, the longest time I was on a dose 6 weeks ,the shortest 10 days. I have now been on 20mgs. since May. My bloods were still high and I was sent for a PET/CT scan in June which showe no signs of further inflammation. My last Rheum.appointment was in July whrn I was told to keep on 20mgs. I have never felt better since Nov. than I do now. My G.P. recently took blood and has now referred me to a Haematologist because my white blood cells have risen, he says they are 19 and should be 12, I was wondering if anyone else has has had this.

0 likes, 17 replies

17 Replies

  • ChelseaLouise33
    ChelseaLouise33 catherine34621

    Posted

    Hello im new too al this and havent actually been diagnosed with anything but ima  23 yr old female and have had pain and aches for over 2 mionths and have elevated esr results. Could i just ask what your esr results were please? Im juyst wondering if mine are okay as one doctor has told me high when another doctor has said they are nothing too worry about. Thanks xx
    • catherine34621
      catherine34621 ChelseaLouise33

      Posted

      Hi ChelseaLouise33, my results were over 100 at the start, but went down to 30 then up again. I don't know whar they are now.

       

    • ChelseaLouise33
      ChelseaLouise33 catherine34621

      Posted

      Hello mine are 29 and im 23 yrs old one doctor scared me a locumdoctor and said oh very high for your age never seen anyone your age with that high then I see the head gp at my surgery and he said the complete opposite he said its fine nothing too worry about then started going on about my weight can be a factor to it aswell so I wasnt sure what too think. Hope all goes okay and ou get the answerts you need. smile THANKS FOR REPLYING TOO ME X

  • tina-uk_cwall
    tina-uk_cwall catherine34621

    Posted

    Hello Catherine, I'm sorry but I can't help you on this other than to say both an autoimmune condition and cortisone as a treatment can increase the white cell count. All the best, tina.

  • iellen32
    iellen32 catherine34621

    Posted

    The temperings were not what you were in need at the moment they were prescribed.

    Observe your symptoms.

    We feel when we are taking the right amount of Pred.

    I have CGA and throug experience I may say I got to my my system ....fairly.

    Hope you find the amount to take which will make you feel comfortable the best is possible.

    Nobody knows us better than ourselves.

    • ChelseaLouise33
      ChelseaLouise33 iellen32

      Posted

      i am not on any meds nor have i been diagnosed with anything apart from bad postrure and tension in neck and back 
    • ChelseaLouise33
      ChelseaLouise33

      Posted

      sorry that comment from above was for a different post just ignore me lol, sorry x
  • masonc
    masonc catherine34621

    Posted

    I started GCA January 2008, now take 4 1/2 mg of prednisone and this is normal.

    I have attached a graph showing Univ of Iowa withdrawal experience. All one can say is "Have patience."

  • dboza
    dboza catherine34621

    Posted

    I too was diagnosed w/ PMR in Nov. 2016. I had recently recovered from strep throat. I had my first flare up 24 years before. Neither my regular doctor or reuhmatism doctor knew what I had. My sed rates were very high. My was given a strong ansaid, that helped a little. My pain finally completely went away when I caught the chicken pox and spiked a 103 F fever. I think I burned it out. Never had another flare up until last year. Now, my doctors know what this is. I went to doctor and she immediately put me on prednisone and it worked like a miracle. I started on 40mgs. I am lucky that my only real side effects were things tasted different. I did not get the voracious appetite. I did gain water weight as I started to taper the med. I am completely off the meds right now. I took off all the additional weight. I do get a little stiff sometimes and I was fearful it was flaring again. My sed rates were fine, nice and low. I take Aleve (naproxin sodium) if I get a little sore and it works fine. I am 59 years old and very active. I had my 1st flare up at 34 years of age. So far, so good. I am just a little amazed on how some of the members of this forum do their own self adusting of their steroids. I eat a pretty healthy diet and do love my coffee, at least 4 cups a day, no problems. I live in the States.
    • catherine34621
      catherine34621 dboza

      Posted

      Hi dboza, I had the different taste thing, I am also very active (or was). Thanks for the reply.
    • Anhaga
      Anhaga dboza

      Posted

      "I am just a little amazed on how some of the members of this forum do their own self adusting of their steroids. "

      My doctor told me at the very beginning that I would have a lot to say about the weaning process went.  I started out following her directions, and then switched to DSNS after checking with her.  So we aren't all quite the free spirits you imply!  I think most of us keep in touch with the doctors, although some medics are more reluctant than others to relinquish control to the patient. 

  • dea13
    dea13 catherine34621

    Posted

    Hi, My white blood cells went high and they sent me to a oncologist as they thought it could be Leukaemia  : He took blood but told me it was the Preds doing it, other things came up also... I was on 40mg a day Preds, so my body was not being happy. In the end they did find the reason my tests didn't settle, which was breast cancer, very lucky contained in my milk duct only, just had my op. So start ticking some boxs : Of course we are all different on Preds : Good Luck 

    • catherine34621
      catherine34621 dea13

      Posted

      Hi dea13, I had a PET/CT scan which showed no other inflammation and no sign of anything nasty, I have since had an appointment withmy Rheum. who says it could be the pred.  the innflammation has gone slightly iower so she has lowered my dose to 17.5mgs, so we'll see.

       

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