Diagnosed one year ago 1/7/15. Grateful for such generous response/advice to "hair thinning" and the depressing wt gain. I am researching the Amazon products mentioned.
I notice many people mention their blood test results and the med adjustments made relative to those numbers. My esr was 98 but my doctor said in reality none of the tests should determine ones dose of meds because its highly individual. (Just sayin )
I have newly experienced very high intra occular (eye pressure) . Had eye pain but hard to distinguish from a basic headache. Pressure was 35 and 34! I think I read that someone else had increased cataracts and glaucoma. My ophthalmologist decided it was from the combination of prednisone and pmr. He prescribed special eye drops and in 7 weeks I'm within normal pressure!! Just thought I'd mention it in case anyone else is feeling that eye pain (other than gca). I will need to continue those drops while on the prednisone evidently.
Happy New Year to everyone. I appreciate each and every one of you. Your generosity of information and kind support are important and in some cases sort of a lifeline. Now, if only the medical community were as knowledgeable. Lol
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PMRpixie
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I developed glaucoma and cataracts whilst on higher doses of Pred. Fortunately, my pressures weren't as high as yours, in the low twenties so I didn't require drops. The pressures were monitored for a year to 18 months, and they decreased back down to normal levels as I decreased the Pred. So hopefully yours should as well without having to continue with the drops.
I had a cataract replacement on my "good" eye in August 2014 - such a difference! Obviously don't need one on my " lost" eye! So saved the NHS some money there then!
No, your doctor is quite right that blood markers should never be the single basis for altering dose - but for many people they know that seeing a rising ESR or CRP means the inflammation is rising and if they have twinges it is likely to be the PMR. Anyone who is seeing a trend of rising levels shouldn't be considering reducing - but also waiting for symptoms before increasing the dose. There are doctors who will tell a patient to reduce regardless - and that is sometimes a bit silly!
Thank you for that information about eye pan - someone was asking about that the other day, concerned it might be GCA. It didn't sound GCA-ish but I wasn't aware raised eye pressures can be painful. Pred will raise eye pressures in some patients and left untreated it can progress to glaucoma. It is recommended that eye pressures be checked annually - but of course it is rarely adhered to because now you might have to pay for the eye test yourself in the UK and other places. But it is very good value for money given what they can see going on!
It is so short sighted (no pun intended) for the health care authorities not to keep vision (and dental) care as part of global preventative measures, especially with an aging population. I agree that even having to pay for it, a good eye check up is good value, priceless one might say. Here's to better health for all of us this year!
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blurry eyes
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