Question about PMR taper and Methotrexate

[Darcy2000]

Here is an odd question. 5 years with PMR and a stint with GCA . Wonderful rheumy has put me once again on a tapering regimen 20 mg 👇And introduced Methotrexate . Hers ‘s the thing … is it likely I can get off both eventually . With Methotrexate he is adamant that 4 alcoholic drinks PER WEEK is the limit . ..no stock piling for weekends. I agreed because health is number one and I appreciate the damage on the liver with the Methotrexate and aclohol combination. We do enjoy our wine and have many social engagements . I am hopeful that there is a light at the end of the Methotrexate tunnel,. Would it be likely that I will be on this drug forever ? How boring is that …. Only wine and spirits lovers need respond as you will feel my pain 😂

[PMRpro Ambassador]

Plenty of people with GCA get off pred - that we can say. Having MTX in the mix is a lot less common but if the GCA goes into remission - which it tends to sooner and (dare I say) more easily than PMR, you will also be off the MTX.

Personally, I find less attraction to alcohol as I get older anyway.

[Darcy2000 in reply to PMRpro]

Actually my GCA is not an issue but my PMR just hangs around . ..

[PMRpro Ambassador in reply to Darcy2000]

It does. And according to the opinions in the meeting I'm currently at online - this phenotype is harder to manage and potentially more resistant. Sorry.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Agree about GCA being easier re remission [once diagnosed of course, which may be the difficult bit!😳].. and alcohol - or at least more selective… 😂

[Oxfordboy2]

Hi Darcy,I can sympathise with your dilemma as I too enjoy the odd glass.I did only drink moderately before my diagnosis enjoying a Jameson or single malt whiskey and went weeks between drinks but the thing I find harder now is I sometimes enjoy the first drink that I would like a second but do refrain.Like you I am on MTX and that only for GCA/LVV and my rheumatologist said the odd drink is no problem.He also thought I may need it for 4 years.Perhaps I can celebrate then with 2 drinks on the same night.I’m not sure if 4 years in total is light at the end of the tunnel but hope so.

[Darcy2000 in reply to Oxfordboy2]

Thanks for your input…I will survive but I do miss it🙁

[Llewellington]

Hi I am about to start MTX on 3rd June with the reason for the day being that we are having a few days away next week… and I want to be able to have wine!

The warnings about alcohol has been my biggest barrier. We like to enjoy a drink or 2 on some evenings and I know I will miss the option to drink what & when I want (in moderation of course)

I’ve heard conflicting information. Rheumy gave me a link to the medication and it says no more than 14 units per week with no binging. However, hospital pharmacist said alcohol will make me very sick I’ve also got 2 weekly blood tests to check liver function as this is the area most affected.

That said, I’m in a pickle and need to try to help myself. Both my rheumy & GP think I will see a difference on MTX and I am hopeful that I can start to once again enjoy the simple things in life, pain and virtually alcohol free!

I hope you have some success too.

[Darcy2000 in reply to Llewellington]

I hear you loud and clear … … I have been very dilligent about Alcohol intake but admittedly it’s been a bit tough. My Rheumy says 10 units per week 🙁. We have a wedding this summer and a 2 week trip to Ireland ( we are Canadian).. so that will be a bit challenging . I also have bi weekly blood work which is coming up soon.Hopefully the Methotrexate will agree with me and I can put this PMR journey to bed once and for all

[Noni71]

I was on both Methotrexate and Tocilizumab for GCA and LVV but had to cease the Methotrexate as it played havoc with my liver function. My rheumatologist said as long as I stuck to the government guidelines for units consumption then that was fine and definitely not to binge drink. I cut the wine down considerably and only had the occasional glass. It was difficult but necessary. My husband thought it was wonderful as I always drove to every social engagement! Good luck.

[Darcy2000 in reply to Noni71]

yes!!!..that is where I am right now someone always wins and this time it’s my husband …. I am the new chauffeur for our social engagements

[Noni71 in reply to Darcy2000]

Bugger!

[Maisie1958]

Hello, I’ve been on MTX for two and half years with no problems so far. I came off Prednisolone exactly two years ago after seven years on low doses to treat PMR. Just be aware of adrenals catching up and don’t reduce pred too quickly.

Rheumatology here says can drink up to the maximum UK guidelines ie 14 units a week -though if used for PA treatment lower limits apply I think. Different countries have different ideas. When I first started taking 15mg MTX weekly I rarely drank, now have become a bit more “relaxed” about my alcohol consumption, but still have booze free days and will try to substitute sparkling water/ low cal tonic - half pints of diet cola are a bit dismal I agree. The husband has recently started to regulate his lager consumption too ( high BP) , any chance your partner would show solidarity and have a few days “off” ? Tbf, my blood tests have always been absolutely fine, not just the liver tests. By the way, I found taking folic acid 6 days a week (not on MTX day) helped rather than once weekly, again different ideas on that dosage. I had a little hair loss initially and felt slight nausea. MTX seems to suit some people only and I’m not sure I would be so lucky if I needed to be on 20 or 25mg weekly. I’m now taking 10mg a week. It’s more the thought of feeling “tired” the next morning and the calories consumed that make me limit the wine intake I’m ashamed to say rather than my next blood test results.

As for being able to stop taking MTX I don’t know, I was on tiny doses of pred for years but could never get off for more than a few weeks before the stiffness and fatigue would return. Is 10mg of MTX weekly any better than 1 or 2mg of pred daily, I don’t know, but at least you have proper monitoring and none of the pressure to reduce?

I’ve missed a couple of doses of MTX after vaccines with no problems. Last year I did miss 4 consecutive doses and into the 5th week I started feeling stiff with achey biceps and thighs plus waking up sweating at 3.50 am and was happy to restart my MTX. I will continue to try reducing the dose to 7. 5 mg, Rheumy nurses can’t see why I’d want to do that when ok as I am- completely different attitude to Prednisolone!

Sorry about the length and it’s just my experience(PMRonly) but MTX has been a positive for me. You can always stop it if problems. All good wishes.

[Darcy2000 in reply to Maisie1958]

wow …so much great information…thanks for such a great response …really appreciate you taking the time

[PMRpro Ambassador in reply to Maisie1958]

PA???

[Maisie1958 in reply to PMRpro]

Sorry should be PsA - Psoriatic Arthritis!

[PMRpro Ambassador in reply to Maisie1958]

I assume because then the dose is almost always 22.5mg - double what you are on. It think it depends very much on the doctor - they used to be paranoid about MTX and alcohol.

[Maisie1958 in reply to PMRpro]

I’ve just checked the patient info in my latest box of tablets and says alcohol should be avoided during MTX therapy, sure it wasn’t as definitive when I started in ‘21. Oh no! Thought it was more of a caution. I remember lamenting about no alcohol to the rheumie nurse before commencing the treatment and he said “you can have a drink, just don’t go mad! “ Hopefully I haven’t.

Don’t want to be responsible for promoting irresponsible drinking. Think it’s such an individual thing if you get on ok with mtx, dosage and other drugs and Co morbidities etc. Can’t say I had problems that I knew of being on tiny doses of Pred for years either. MTX or Pred seemed to work well to give me a vg quality of life. Very lucky.

[Maisie1958 in reply to Maisie1958]

creakyjoints.org/living-wit...

This is an 2018 US based patient info report- not so keen on alcohol and also says a bit about PsA lower limits but doesn’t say why.

Forgot to say that the last rheumie nurse I saw was more concerned about the effects of wine on my old bones than liver. My rheumatologist never bothers about asking about units of alcohol. Sorry didn’t mean to get excited and write so much on a Saturday afternoon 💐

[PMRpro Ambassador in reply to Maisie1958]

"A type of liver disease called nonalcoholic fatty liver disease has been associated with psoriasis. Having psoriatic arthritis increases this risk. Some drugs, such as methotrexate and NSAIDs used to manage psoriatic arthritis, can also affect the liver, so your doctor will monitor your liver function regularly."

arthritis.org/diseases/more...

With MTX there is a double whammy - both sorts of liver disease.

[PMRpro Ambassador in reply to Maisie1958]

I suspect it depends on the person a lot - some people have to come off MTX because of liver effects even when they didn't drink at all.

[KASHMIRI1 in reply to PMRpro]

I think mine still is and there is a warning on the information sheet in the packet.

[Rynn33]

Hi I was told by my Rheumy that once I taper to zero on Pred I will still be on MTX for a further 2 years most likely- depending on how the PMR reacts.

[Darcy2000 in reply to Rynn33]

Thanks so much for your input