Lupus and caffeine in the news

[lupime]

On the front page of the Times this morning is a story about a study in the journal Rheumatology where 31 people with Lupus were studied. It suggests that caffeine may be protective for the heart in people with Lupus because of its anti inflammatory properties, promoting the growth and regeneration of endothelial cells which line the inside of blood vessels and the heart. Small sample of people but interesting nonetheless.

[lupime]

academic.oup.com/rheumatolo...

[marypw]

That’s a shame - I avoid caffeine because I don’t want to exacerbate my energy peaks and troughs!

[Breavheart in reply to marypw]

that’s exactly why I don’t drink it I’d love to but I’ve just started prednisolone four days ago. I’m finding it very difficult, after months of tests and MRI scans and I have vascular loops in my brain so they are thinking it is GCA but not sure They started me off on 40 mg and I am having a lot of problems with it. My body is boiling hot and I haven’t slept only every other night. Any advice would be fantastic friends hunt here thought I should’ve been on it months ago but the doctor insisted until I had all the tests they wouldn’t give them me when I got to the hospital the other day my body nearly crashed because of the fog and the bad weather, I was a couple of minutes getting late into the hospital and I hate to miss appointment so my blood pressure was sky high and my heartbeat was off the scale so the machines wouldn’t take it. It was a bit scary. Any thoughts about it anyone? Thank you.

[marypw in reply to Breavheart]

Sorry but that’s way beyond my knowledge - hope somebody else can give you some info

[lupime in reply to Breavheart]

Sorry to hear of this. Suggest you start your own thread where your question will get the attention it deserves. Sorry I cant be of more help. All the best to you. x

[DorsetLady in reply to Breavheart]

Not quite sure what you mean by vascular loops - but maybe have a look at the PMRGCAuk forum on HU - there is lots of info on GCA there. See this link for starters-

healthunlocked.com/pmrgcauk....

Sleep disturbances are very common - especially on higher doses of Pred… but they should improve as get lower - see this for some tips that might help until that happens -

healthunlocked.com/pmrgcauk...

By boiling hot, do you mean sweating or just feeling hot to touch?

If you ask your question on the PMRGCAuk forum - you’ll probably get more replies if it is GCA

[Charley33 in reply to Breavheart]

Having to take higher dose steroids is tough going ! I found that taking the steroid dose very early in the morning - 5-6 am worked much better for me . Also advisable to be covered with some gastro protection whilst taking a higher dose . I went on a calcium & Vit D for bone protection too.

Best to avoid Caffeine and sugar whilst on higher doses of steroids .

[Treetop33]

Terrible shame. Avoid caffeine as well as it makes me itchy. I love coffee though and constantly feel cheated.

[StriatedCaracara]

Thanks, I have just started to have a caffeinated drink - before 12 noon only, as feeling benefits. Had been only having non-caffeinated drinks until recently.

Think my body is appreciating a little bit of caffeine if well timed 😁🍵

[lupime in reply to StriatedCaracara]

Thats what I plan to try SC.

[StriatedCaracara in reply to lupime]

I try to have my once a day caffeinated drink before 10 am. Not too strong or large drink though.

If later in day then sleep affected the following night.

Find gives energy and makes me feel happier. Hope works well. A simple joy too.

[lupime in reply to StriatedCaracara]

And we could all do with some of those. All the best to you.

[Redlady9]

Hurrah! I love my coffee in the morning and was afraid that little pleasure might have been discouraged too. 🥰

[KnitSewPurl]

Cannot hv caffeinated coffee as it effects my body-also hv benefited not taking it and switch to de caff because of my constant migraines.

[Gizmok9]

Phew! I’m sorted I function on coffee I average 10 cups on a work day 😳

[lupime]

I don't usually have caffeine but shall maybe try a couple of cups and see how I feel.

[Savosa]

Hi I love caffeine I drink diet coke to function properly I've had Lupus for 14 years and had all sorts of combinations of treatment from high dose pred to iv infusions I believe my pred is too low at 6mg and should I now have to give up caffeine I would literally be in bed for most if not all the day everyday. I eat as healthy as I can and due to extreme fatigue I do not have capacity to exercise.. yes I know you need to exercise to get more energy but as a side issue I also have myositis and I've had that for 16 + years and lost a lot of muscle over the years plus fybro and other Autoimmune stuff but hey, caffeine I couldn't give, up, Ive given up alcohol and nicotine up so fingers crossed that article is true and I'll tell my grown up children I'm looking after my heart when they look in my fridge.

[soul22]

That's very interesting,they should do a bigger study always thought it was the opposite though that was in non lupus patients

[Porridge5]

it sounds promising, I gave up caffeine many yrs ago due to very high levels of anxiety and sleepless nights despite being ridiculously tired.

I now sleep most nights and don’t have to keep going to the loo during the night.

I get an energy boost from exercise

My choice is cycling or cross trainer both give me energy and alertness which can be a struggle. If I’ve done a big cycle or hard going one with friends I can suffer a high all night not wonderful but I think the exercise is very heart healthy.

I was given caffeinated coffe in Starbucks I had a migraine for the whole of the day and was unable to sleep so I avoid it.

I push myself out the door to cycle or go to the gym. As I feel just as tired if I don’t I have that lovely buzz after and often find people to chat to what could be more uplifting.

I’ll keep an eye on that study, it was tiny though.

[Paprika60]

I love my double espresso (3 cups!) in the morning but never after 11 am as it affects my sleep. Without my coffee in the morning, I wouldn't have my daily movement! It is an absolute necessity. 😅