Caffeine GCA

[DesertDame]

I have GCA/PMR. I am 78 years old and have no other medical conditions at this time. I have been treated with prednisone for one year by my internist. I have an appointment to see a rheumatologist for any additional recommendations. Meanwhile, I follow all of the strictures on diet but once in a while I have a little too much caffeine, and I swear when I do, I feel better. Anyone else have this experience?

[DorsetLady PMRGCAuk volunteer]

Can’t say I noticed any discernible difference with my GCA whether I had caffeine or caffeine free drinks…

[winfong]

Well, it is a stimulant

[PMRpro Ambassador]

What do you mean by "all the strictures on diet"? The only thing we say is cut carbs to reduce the risk of weight gain and developing steroid induced diabetes. In terms of anything else, it seems clear everyone is different and some people can't deal with one food, another can eat it to their heart's content.

Someone else recently was worried about coffee - thought they shouldn't drink it, but felt better when they did. Sometimes the proof of the pudding really IS in the eating. Or drinking ...

[Lyndaki]

The only thing…in my experience…to be careful of with caffeine is how it affected my eyes! Not long after being diagnosed with GCA I had weird “movements” in my vision & started to panic a little. I was advised at that point by a medical friend not to drink too much a coffee…& then realised I’d recently had a strong one at Sainsbury’s cafe. I then changed to decaf whilst I was on high doses. No further problems.

[Perigrina]

Coffee is antiinflamatory so will be helpful for many people. Caffeine can mess up sleep, and lack of sleep is inflammatory! Recent research (sorry, did not keep a link) found the timing of coffee was crucial. So all good in the morning and all bad after lunch.

[Viveka]

I have found caffeine to be very helpful. If I have symptoms they improve temporarily - perhaps it expands the blood vessels. But it's most helpful for the element of GCA that makes me feel ill and shaky after exertion. For instance, I had a half-hour journey to a restaurant, nearly returned home, but stuck with it feeling so ill. Friends were very kind and ignored me as I sweated silently into three napkins, but after a coffee and a bit of food, I recovered and perked up amazingly. I only have two cups a day. Main problem is that the milk really spikes my blood sugar at the moment and black coffee is a bit too acid.