So confused at the moment: I was diagnosed with GCA... - PMRGCAuk

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So confused at the moment

MavisEllen profile image
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I was diagnosed with GCA in February 2017 and started on 60mgs Prednisolone. Regular blood tests and consultant rheumatology visits followed. A year later I was diagnosed with PMR. In January 2018 I was told I had steroid induced Diabetes and commenced on Metformin. I have frequent chest infections that require antibiotics and continuous cellulitis of lower legs. I become unwell every time my prednisolone reduces to less than 5mgs. I recently got down to 4mgs and became so unwell with breathlessness and headache my GP put me on 10mgs which helped but 3 days later told me to drop to 5mgs which I did. The neuropathy in my feet makes walking increasingly difficult as I can't feel where I am putting my feet. When I refused to take Methotrexate my consultant said he could do no more for me and handed my care back to my GP. I am on pregabalin for nerve pain and that has helped but now my sight is blurred most of the time and even typing this is more difficult than usual. I have a 'muzziness' in my head all the time. Any advice would be helpful. Does my situation resonate with anyone. I am waiting for the result of a chest x-ray which I had last Friday.

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MavisEllen
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SnazzyD profile image
SnazzyD

Oh dear, how well controlled is your diabetes?

PMRpro profile image
PMRproAmbassador

Metformin is implicated in worsening diabetic neuropathy - so I would ask to discuss this with the doctor to see if you could manage without it and adjust your diet (many on the forum have reversed steroid-induced diabetes just by cutting carbs in their diet) or even try the new low calorie dietary approaches for diabetes. Or there are alternatives to metformin.

podiatrytoday.com/blogged/m....

If you already have chest problems the rheumatologist was being a bit cavalier in saying you MUST take methotrexate or he wouldn't care for you - methotrexate can also have lung effects, even at the low doses used in rheumatology. And there are alternatives to it.

But being at 5mg after less than 4 years having had both GCA and PMR is actually not a bad result by anyone here's standards, The other question is as to whether the unwellness below 5mg is due to PMR still being active or because your adrenal function is impaired after the time on pred.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

Looking at previous post you seem to have been struggling for a long time - poor you.

Have to say, I do wonder whether you have something else going on - probably not want you want to hear with GCA, PMR, Diabetes etc already in the mix....either that, or that 5mg is your optimum dose for the moment.

If the latter, then there is no point trying to reduce - until your illness is ready to let you.

How do feel physically now at 5mg after a very quick increase to 10mg? Anything else besides the muzziness and blurred sight? And how long have you had that? Before or since pregabalin? This is a side effect -

“Dizziness and drowsiness warning: This drug can cause dizziness, drowsiness, and blurry vision. It may affect your ability to think, see, or move. You shouldn’t drive, use machinery, or do other tasks that require alertness until you know how this drug affects you” .

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