GCA and an eye question.

[Aleish]

Cannot have biopsy. Had two field tests that appear normal. However, without my glasses on and only at a slight distance the images are stacked on top of each other. Isn't that a concern? Also get bad TMJ and scalp soreness. Headaches were more frequent before prednisone but better now. I am on 20 mgs. prednisone and headaches are not waking my sleep. Seeing a new rheumatologist next week and I feel it would be prudent to start my prednisone higher. I weigh 100 lbs. but then again my sed rates are dropping at 20 mgs. So, if this is vascular with the PMR and 20 mgs is dropping my rates , will it still be clearing the GIA, if I have it? Scalp has not flared either. Just TMJ and vision issue. Ophthalmologist is young and probably good but not sure how much of this she has seen. She thinks I don't need an increase. I have trouble with blood pressure and on med. I have the mthfr gene defect c677t and it is the gene causing me to have trouble regulating pressure. Scared that prednisone at high dose might be risky for me. Hopefully new rheumatologist will be more able to help me. Any input is appreciated from group. Thanks.

[PMRpro Ambassador]

Double vision, headache, TMJ-type soreness and scalp pain are all typical of GCA. If the symptoms are abating at 20mg then you are probably OK - but if the visual symptoms get worse rather than better you might well need more. Not being able to have the biopsy isn't critical - it is negative in more than half of patients anyway and decisions to treat should be on a clinical basis - the symptoms. Unmanaged GCA can also contribute to high BP.

It is a balancing act - a new batch of pro-inflammatory substances is shed in the body each day and the effect builds up like a tap dripping into a bucket eventually fills it and it overflows. Once you are put on pred it clears that out if it is a high dose and then you reduce to find the lowest dose that stops symptoms returning, i.e. the amount that is just enough to deal with each day's new inflammation. No-one wants to be on more than they need - but the side effects of pred are rarely worse than the ultimate side effect of GCA: blindness.

[SnazzyD]

Hello,

The vision issue you describe, you say it is without your glasses on. Is this a new feature you wouldn't expect without your vision correction? Also, has this feature occurred after starting Pred or was it there before and your eyes were checked by the Opthalmologist when it was present?

[Aleish in reply to SnazzyD]

Was there before prednisone but seems worse with the prednisone.

[SnazzyD in reply to Aleish]

Well, you have the second opinion next week which is good. If your eyes get worse in the meantime make sure you get emergency help. Two thoughts are that if it was GCA getting worse and affecting your eyes, putting your glasses back on probably wouldn't correct the problem unless by coincidence and they just happen to fix it at that prescription. It probably wouldn't stay like that for long though, but that is just a guess based on how quickly my eyes deteriorated. The other is that Pred does mess with your eyes. Since being on Pred, I can't get by without my glasses for close work like I could before if I really tried. My eyes also take longer to correct from one distance to another which I've been told by an eye person is ok for Pred as my eyes show no other problems.

[Aleish in reply to SnazzyD]

Thanks for telling me this. I am positive its vascular. I known my body better than the doc. Constant tmj was never an issue. The headaches that arrived in sleep were never an issue and are now not waking me up. The eyesight changed . All taken into the picture tells me it's GCA and PMR.