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 ...

[DesertDame in reply to PMRpro]

Thank you for your response. I have been struggling a bit and didn't get back online. I don't use alcohol at all which I understand is a restriction that is important. I try not to eat inflammatory foods although I don't know if that makes a difference. I have never been one to eat sugar and I strictly limit that. Actually alcohol and sugar are no problem for me to give up. It's starches I have a problem with but I strictly limit those because they are very quickly sugar. That's about it. Caffeine is my only guilty pleasure.

[PMRpro Ambassador in reply to DesertDame]

"I don't use alcohol at all which I understand is a restriction that is important."

Depends - I have drunk alcohol most of the way through my PMR because it is MY guilty pleasure. Going without it has never made much difference so if I want a glass of wine with dinner - I have a glass of wine with dinner.

[Rabbit090 in reply to PMRpro]

I’ve seen mention of possible impact on the liver from high dosages on some lists of potential side effects. I mostly gave up alcohol in January because I have been trying to simplify things with the vast number of meds I’m now on but like you, if it’s a nice meal that deserves a glass of wine, then a glass of wine it is!

[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.

[DesertDame in reply to Perigrina]

I believe I read something about caffeine timing. It makes sense considering circadian rhythm. I am going to stop indulging later in the day. I rarely do it, but I'm going to quit completely. Thank you for the reminder.

[HeronNS in reply to DesertDame]

If you have been in the habit of having caffeine regularly don't go cold turkey. But if it makes you feel better, why give it up? I drink three mugs of tea a day, not too strong, but still.... If I don't have afternoon tea more likely than not I'll develop a withdrawal headache overnight. Caffeine doesn't keep me awake (my cats do though 😼).

[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.

[RunnerJoe]

I enjoy a cup of Earl Gray tea every morning with my breakfast. The caffeine makes me feel sharper and more alert. I also enjoy a glass of wine or a beer a few times a week, just for the quality of life.