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?
Has your GP checked you for GCA?
Giant cell arteretis is fairly common problem with PMR. It is basically an effect on temporal arteries causing sight problems and terrible headaches. Can be confirmed by a biopsy of the temporal artery and needs a higher dose of prednisolone than PMR to prevent vision loss.If this sounds like you would definitely go back to GP
Get a new RA doctor, and have a test for GCA. Many RA doctors are unfamiliar with PMR. This forum is of great help but an accurate diagnosis is important. If it is, slow tapering is the key.
My sex rate was higher than normal but not high enough to receive the diagnosis.
Sorry about that, the sed rate
See you have trouble with predictive text like me;think you meant sed rate
Giant Cell Arteritis is a disease that seems to be related to Polymyalgia Rheumatica, and it can cause sudden vision loss. Others on the forum are more knowledgeable and will give you more information, but advice I have seen given to people with similar problems to yours is to hie you to an emergency department as GCA is treated with the same urgency as a stroke. Unfortunately it seems that treatment with prednisone makes subsequent diagnosis of GCA more difficult as many of the indicators are in remission from treatment for PMR. As your vision problems are somewhat chronic you may be all right to wait, but I would definitely seek some better response from medical people.
Do not worry.Made me smile thinking of how they could measure sex rate-laughter is good at reducing pain level.
Thank you for your advise. I'm feel so hesitate to seek further midical help due to there lack of interest and feeling like I'm not being believed, but I do appreciate your advice.
I'm still smiling at that one.
If you look up the symptoms of CGA on the internet you will see that they match your problems, so I would suggest you print off the info and take that to your doctor - your GP sounds pretty reasonable - and ask. It's your body, your eyes, your life. The doctors are there to help you maintain or regain your health. Good Luck!
You got my attention.....What???? ONly talking about
sed rate........oh well
Deb,
how long were you on Pred 15 mg?
i thought Pred can also effect our eyes if on too long at higher doses (don't know), but maybe go to real eye doctor verses just the perscription ones...I forget name and get it confused...
when end you say "pain", is it a 10 on pain scale like before Pred? Or about a 6-7? Uncomfortable but not make one fear for their lives type of pain?
I learned here some of us are stil feeling about 70% of pain and some have no pain and I know we all have different pain tolerance.
And my SED rate is back down to 6 verses 80 when I first was diagnosed.
deb dont despair as you get more used to pmr you can usually. adjust to the pain and pred, its a long road but just settle down and dont be panicing. that doesent help. you will get there in the end. i too get blury vision. maybe its because i spend too much time on my laptop. if i rub or blink my eyes it moves hope this helps
Hi Layne, thanks for responding. I have been on prednisone for about 18 months, 15mg. I have been to 2 different eye
specialist just recently and they found no reason for the blurred and double vision. It has gotten bad enough that I can no longer drive. I'm so frustrated with the doctors, if you don't have
something
that jumps out at them they chalk it up as nothing. Before I started on prednisone my pain was a 8or 9 it hurt to move. My life was an existence only.
Thanks Pauline, my fear is I'm going to lose my vision, and just want reassurance that that isn't going to happen