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I'm at a loss as to what I should do.

Posted , 14 users are following.

deb88821
deb88821

Was diagnosed with pmr a year ago by my family doctor, was put on 15mg prednisone and my entire life changed, the pain was gone and my quality of life restored. Was sent to a rheumatologist to confirm diagnosis and was

Told there was nothing wrong with me and to discontinue prednisone. My

gp agreed to keep me on it.Here's the problem, my gp now wants me to

taper down to 5mg. About the same time as the pmr diagnosis I also started having problems with my eyes, blurred and double vision, this condition

has gotten quite badand I'm really struggling with my vision. I have been

checked out by eye specialist and mri and told nothing is wrong. I'm at the end of my rope and just don't know what to do. The tapering of the prednisone is not going well as the pain is all coming back again, and I just can't

keep going through this. I feel like the doctors don't believe me and have no where to turn. I know that I can not go back to living a life of existence

only. Is there any one out there that can help me?

1 like, 50 replies

50 Replies

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  • tina-uk_cwall
    tina-uk_cwall deb88821

    Posted

    Debbie, first of all you need to know why your GP wants you to reduce. What are we taking about here? Reducing your dose or getting you off the preds all together?

    if you have been on preds for a year, what has your tapering regime been like till now and what sort of response have you had to each dose. 

    You say that the pain is all coming back? At what dose and how long has this return of pain been going on for?

    have you had regular blood tests? If so what have any of these bloods revealed. 

    i assume your GP referred you to an eye specialist and they ordered the Mri scan that has revealed nothing. Obviously this is worrying because in spite of the all clear you are still suffering blurred and double vision. Have you considered visiting a high street optometrist? They perform many tests and take a photo of the back if your eye which can reveal if there is any pressure. My optometrist knows all about gca, hopefully if you did pay yours a visit they may have some suggestions for you.

    as you have been on preds for so long a biopsy is pointless so perhaps you could ask your GP for a referral with a different rheumatologist.

    currently you sound very scared, confused and anxious and quite frankly so would I be. Fir a year you thought you had one medical condition only now to be left in limbo and a diagnosis is now up in the air.

    if you cannot get any positive response from your normal GP book an appointment to see another at the surgery.

    i wish you all the best, tina

    • tina-uk_cwall
      tina-uk_cwall

      Posted

      Debbie, I've just read your reply to layne. Are you saying that you have been on the starting dose of 15mgs all this time? Why? Regards tina
    • deb88821
      deb88821 tina-uk_cwall

      Posted

      Thanks for you replyTina.I tapered down from the prednisone in January to 2.5, but was in the same condition before I started so was put back on to the 15mg. I'm now down to 7.5 and experiencing pain. His goal is to have me down to 5mg.
    • tina-uk_cwall
      tina-uk_cwall deb88821

      Posted

      So Debbie, you have been treated for pmr for 18months now. The same length of time for me also. I started on 15mgs and I've suffered 1 flare, but that aside I am still at 7.5mgs.

      your reduction regime has been far too severe - down to 2.5mgs in January!! So no wonder you experienced pain and stiffness because you were experiencing a flare.

      your Dr did right by upping your preds to 15mgs to get the flare under control , then the subsequent reduction should have been a slow reduction until you reached the dose that still controlled the inflammation by keeping the pain and stiffness at bay.

      his goal may very well be to get you back down to 5mgs but that is only his goal. In the meantime you must up your dose to the level that controls the inflammation and slowly reduce down. I use the dead slow and almost stop method and only reduce by .5 perhaps you could try this method.

      in the meantime sort out this business with your eyes. Regards, tina

  • lodgerUK_NE
    lodgerUK_NE deb88821

    Posted

    Go to A&E as soon as possible, explain the situation and ask to see the Consultant in Charge of A&E.

    Your ESR and CRP do not need to be high for a GCA diagnosis.

    Tell them everything and I mean everything.  GCA is not to be messed around with and you need medical attention asap.

    If it all proves wrong, that does not matter, if it is GCA and it is not treated timeously you can lose partial or total vision.  No I don't want to scare you, just make you aware of your situation.   Get Cracking and take someone strong minded with you to help you fight your corner.

  • FlipDover_Aust
    FlipDover_Aust deb88821

    Posted

    Don't let them tell you everything is fine - it's clearly not!

    Be loud and vocal - don't hold back with them - cry if necessary - don't give up!

    • margaret22251
      margaret22251 FlipDover_Aust

      Posted

      Debs i agree with FlipDover i was cryibg and saying i dont want to loose my sight i think they thought they had a mad women on there hands but i got treated , waited fours hours  but i was there  so was not worried because if my situation had got worse i would have marched in, i was never like this always quite but we cannot mess around with our sight, dont worry love this needs attention
  • heather39822
    heather39822 deb88821

    Posted

    Hi Deb. My PMR was diagnosed in June last year. I was started on 40mg (to the horror of many on this forum who believe 15mg is the norm). My vision too has not been good over the past year. An eye test last September showed no problem other than a new prescription for my glasses. However, with new glasses there was no improvement, so had another eye test in April. The optician said I had "fast developing" cataracts as a result of the prednisolone. I have now had both cataracts removed and while my sight is not perfect (slight blur in one eye) I think it is generally improved. Perhaps it is a route you could explore in sorting out your eyes. By the way in the past three months, four different opticians/ophthalmologists have assured me no sign of GCA. Heather
    • tina-uk_cwall
      tina-uk_cwall heather39822

      Posted

      Hello all, sometimes I get blurry eyes, but it's because when in a rush I put too much moisturiser round my eyes and I guess some of it must get into my eyes producing a thin layer of grease. Regards, tina
    • lodgerUK_NE
      lodgerUK_NE heather39822

      Posted

      Heather, we don't believe that 15mg is the norm, 15mg to 20mg is the normal recommended dose in the Diagnosis and Treatrment Guidlines issued by the BSR.

      40mg onwards is the recommended dose for GCA.

    • FlipDover_Aust
      FlipDover_Aust heather39822

      Posted

      My GP started me off on 50mg for a week, then 5mg reductions to 25mg. Worked a treat. I guess it all depends on the experience your Dr has with treating it. My GP knew exactly what it was as I described it to her.

      My eyes were blury for a few months at the three and four month mark of treatment but have improved significantly as the dose has gone down - no idea if the two are related though.

    • FlipDover_Aust
      FlipDover_Aust

      Posted

      should have said I'm still reducing - now on 12.5mg and reducing .5mg every month or so on the DSNS regime.
  • Mrs.Mac-Canada
    Mrs.Mac-Canada deb88821

    Posted

    Hi Deb,

    I have blurry vision, some days worse than others.  I was recently at my eye specialist as I have glaucoma and mentioned it to him.  Ahhhh, that's the prednisone he said.   There were no other problems with my eyes.

    That being said, I totally agree with everyone that suggested going to A & E and insisting that your eyes be checked out.  The potential for losing your sight isn't anything to mess with.

    Best of luck and hugs, Diana🌸

  • pauline36422
    pauline36422 deb88821

    Posted

    debbie i got down to 5mg ,  and  the pain  strated  coming back ,so i took  the  advice of my lovely  friends on the   forum    and   tried bowen treatment.     after my  first  last  wed i  started  to feel  loads better,   i would advise you to give it a  go.

    for £35,   its well worth it.   how it works i will never  know  but it does,,  all the best

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