Currently on 20 mgs Methotrexate while also weaning my Prednisone . I am currently at 10 mgs of Pred tapering by 1 mg each month.I am wondering if I will have to be on Methotrexate for the rest of my life for my PMR. I certainly miss my wine as it was a very enjoyable end of the day ritual.. I realize I can have a glass here and there.
I check my liver values after blood work and they are doing well. Off to Ireland for 2 weeks ..that is going to test my will power😳
It seems to depend on the rheumy. Some people will get the patient to taper pred to zero if they can, stay on MTX for another year or two and then taper the MTX over time. Since PMR and GCA usually burn out after some years even without MTX, you would expect to be able to get off both eventually.
I was diagnosed with PMR with ‘likely’ LVV recently after a vague diagnosis of ‘unspecified inflammatory illness’ since early 2020.
I tapered off Prednisolone after 28 months but continued on 20mg of MTX which has just been reduced to 15mg thankfully so hope to get it down further eventually but at 62 I expect I will be taking it for the rest of my life.
I still drink moderately but as I am now only taking MTX I don’t have a drink for at least three days after taking my medication. Probably not recommended but I guess it’s a case of life balance and personal choice and I obviously keep a close eye on my liver function tests
Large vessel vasculitis sometimes turns into a life-long condition. PMR and GCA usually resolve after a few years. Is there a reason you are already pessimistic at 62?
Well I wouldn’t call repeating what I have been told by my Rheumatologist being pessimistic. Frankly I imagine she would know more than anyone else about my condition.
Frankly I imagine she would know more than anyone else about my condition.
One would hope so, but don’t bank on it…
Depends who she is… there are many that do, but not all.
Well yes but if I thought that way then I would be being pessimistic! 😂
But not the person asking the question at the top of this thread; nor other PMR/GCA sufferers looking for advice. I remain intrigued as to why your rheumatologist is so pessimistic.
Fair enough but in your original reply you suggested that I am pessimistic which is what I objected to. Firstly, you don’t know me and secondly I am actually a very positive person.
Also your latest reply doesn’t actually make any sense.
My primary concern is that the person who posted the question (and anyone in a similar position who is following the thread) does not get the mistaken impression that being put on methotrexate is an automatic life sentence. If your doctor thinks it is for you, from age 62, I suggest you ask them why. Whether you choose to share the reason with the Forum is 100% your choice.
I think you are missing the point entirely, I have given an insight into my experience only, I imagine that everyone using this forum except yourself would realise that.
I may or may not have to take MTX for the rest of my life but I certainly do not see it as a ‘life sentence’ and fail to see how you have read my post and interpreted it that way. I was just sharing my experience and in fact I am very grateful that MTX is making me feel relatively normal after initially being extremely unwell.
It’s a strange that you feel it necessary to try and score points by commenting on and criticising my post but if it makes you happy………
Have send you a chat message…
Thank you, I think! 😊
Thank you for clarifying matters. Your first post (above) said:
"... at 62 I expect I will be taking it for the rest of my life".
Now you say:
"I may or may not have to take MTX for the rest of my life..." and "I am very grateful that MTX is making me feel relatively normal after initially being extremely unwell."
We are all in agreement. We are all reassured.
I have PMR only and was told that I would be on MTX for around 2 years after finishing Pred - in line with previous reply from PMRpro.
Depending on what you read - on MTX you should either avoid alcohol or stick to maximum recommended unit guidelines per week. I decided to sort of split the difference- the nurse told me to take the MTX on a Wednesday to create a gap and then I have half a bottle of wine over the weekend.
Like you my blood liver results have remained normal so I think it’s fine and if they do get worse I’ll stop the alcohol.
I agree, this is exactly the approach I am taking.
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