GCA Treatment and Wine

[montebello]

Well, although I'm very familiar with PMR (had it for 6 years, ending 2 years ago), I have just been diagnosed with GCA. I'm on 60 MG PRED right now. I have not yet seen a rheumatologist, or even spoken to my GP yet (will do so next week), but I'm already reading about alternative treatments instead of high doses of PRED.

My only "known" vice is my daily glass of wine with dinner, and I'm wondering if I'll have to stop that -- either because of the high dosage of PRED or any of the alternative treatments.

Are any of you fellow "sufferers" wine drinkers? Have you had to stop?

Thanks

[DorsetLady PMRGCAuk volunteer]

I did stop for first 6months or so -starting dose 80mg for a couple of weeks then 60mg for another 8 weeks and coping with sight loss in one eye.

Thought it was probably sensible -but once all that lot was over, did go back to occasional drink, not every day, and can’t say I noticed any particular difference in symptoms or me whether I had a drink or not…

There’s nothing in the Pred info leaflet about not drinking alcohol, not sure on other treatments, never had anything else.

[jinasc]

I am assuming it was the opthamologist who diagnosed GCA and put you on 60mg of pred.

If I am correct............then all I can tell you, is whilst I was on 60mg .............I did not drink any alcohol. I did resume once down to 40mg.

I had so many highs and lows when on that high dose. I reckoned I had enough to deal with at that time.

[montebello in reply to jinasc]

Yes, it was the ophthalmologist that diagnosed me after doing the temporal artery biopsy and getting the pathologist report.

[PMRpro Ambassador]

Hard luck - how unfair!

"Alternative treatments"? There is only one: tocilizumab/Actemra and since you are in the USA you may get offered it if your insurance plays ball. Wouldn't be first line in the UK, probably would in the rest of Europe.

I'm on tocilizumab - I still have my small glass of wine every night, 110ml max, 200ml if I have prosecco as that is the size of the mini-bottle. No problems noted so far.

[2013mayo]

Hi montebello. Well I drink wine, maybe not every day. I don’t think it affects GCA , I did stop for a while when I was on high dose pred as I found it made me hold a lot of fluid, but that may have been the high dose pred.

[KASHMIRI1]

I wouldn't touch alcohol while l have such an unpleasant illness as GCA and the corresponding drug regime. I felt that it is was just not worth giving my body anything else to cope with that wasn't essential.

[Sophiestree]

I am not a regular drinker but am partial to the odd glass of wine or prosecco. I did not drink at all at high doses of Pred as I was so wired and all over the place. When I did it was only one glass, on one occasion when I had two glasses of prosecco I did wake up with a swollen face and so decided that was not to be repeated.I think when you start to lower you deserve your glass of wine and sit there and enjoy it.

Sorry to hear you are back on pred though, but good that your opthalmologist sorted you out as the result could have been nasty.

[Harrywogan]

Hi,montebello ,I have to admit to having some wine at weekends and have never had a problem except I want to open another bottle but I do share with other my other half and never had a problem, and when on holiday have half a bottle most nights,so enjoy ,take care x

[Broseley]

I've always found that I feel more energetic the next day after drinking wine. I carried on while on 40mg and tapering. It also was the only thing that helped with the PMR and GCA pain before diagnosis.

[PMRpro Ambassador in reply to Broseley]

Same here! Best part of the day when not on pred was the time after the evening glass of wine with dinner!

[pog165g]

I have had GCA for 18 months never stopped drinking red wine made no difference to symptoms even on mtx can still have up. to 14 units a week.But what works for me may not be the same for you.

[Blackcat1M in reply to pog165g]

I thought when you were taking mtx you could not drink, my chemist advised me not too.There are times when I would like to have a glass of wine.

Do you drink on the you take mtx ?

[Blackcat1M in reply to Blackcat1M]

Sorry I meant to say do you take mtx on the day you take your dose of mtx.

[pog165g in reply to Blackcat1M]

My rhumy said it was fine she even gave me a leaflet on mtx and even on that it said you could up to 14 units a week

[PMRpro Ambassador in reply to pog165g]

Though preferably not all at once ...

[Blackcat1M in reply to PMRpro]

🤣

[winfong]

I used to be a good drinker (wine, whisky/gin) before GCA. I felt so ill at the time, though, that I totally gave it up. After getting stabilized somewhat, I tried going back to an abbreviated version of my old routine, but it simply didn't work out - just made me tired, woozy-headed. Have since pretty much totally given it up (I might indulge at Christmas, say) and, honestly, don't miss it at all.

[Temoral in reply to winfong]

Same with me...and I don't miss it either.

[Exflex]

I suspect the issue with wine is sugar. Some wines have a lot, others less. Compensate by reducing carbs.

[SunriseHope]

My docs both said “ if you have to have a drink, drink a little red wine” I have done so with no bad effects that I can tell.

[Poshdog]

Love my wine and have continued to enjoy it through PMR journey (started 15mgs pred 5 years ago, now down to 4mgs). Have changed from white to red as taste now prefers red. A small(ish) glass in the evening seems to help any residual pains from the day.

[Dochaz]

Red, red wine... living in France (and probably most of the Mediterranean parts of Europe, maybe not the beer-drinking bits further north and east) it's just part of everyday life having a glass of wine with a meal. I have felt no ill effects and haven't changed anything since I started on Prednisone 5 months ago. My OH was advised to stick to red as opposed to white or rosé by the urologist (prostate issues) and a friend who suffers from type 2 diabetes finds that red wine actually lowers her blood sugar levels.

[PMRpro Ambassador in reply to Dochaz]

They start with the paper after breakfast here - down to the village pizzeria/bar, paper and a glass at about 9am ...

[Dochaz in reply to PMRpro]

Not there yet 😂

[PMRpro Ambassador in reply to Dochaz]

Maybe you have to be about 80 ...

There is a small village near Lake Garda where someone took over the village bar to turn it into an up-market wine shop (enoteca). But he kept the bar on. Some international wine buff was amazed at seeing little elderly men in there at 9am with their glass of plonk and asked why - "Because it is part of the tradition here. Just like wine ..."

[HeronNS]

I think if it were me on a very high dose of pred my main concern would be additional strain on the liver. There are supposed to be some very excellent non-alcoholic wines and beers now, ones which actually taste like and have the mouth feel of the real thing, but haven't had a chance to try any yet.

[Grammy80]

I'd say you have received clear guidelines .....a green light ahead!💕