Methotrexate alternative

[Petertaffy]

Hi everyone, have anyone out there have tried an alternative to Methotrexate, because there too many side effects like can't sit in the sun, can't drink any alcohol etc.

[piglette]

If you think Methotrexate has side effects have you looked at the side effects of pred? There are potentially over eighty of them requiring you to change your life style or are you complaining that you should not lie out in the sun and drink if on Methotrexate?

[PMRpro Ambassador]

None that don't have similar restrictions and potential adverse effects. Personally I found coping with pred preferable.

[Velofan]

I haven’t tried it but was told by my rheumatologist that Tocilizumab is an alternative but only available privately at the cost of around £6000 a year.

[DorsetLady PMRGCAuk volunteer in reply to Velofan]

Not sure that’s strictly correct . It is available through NHS -but only for 12 months (that’s the period was trialled) and only if you have relapsing or refractory GCA -and have already tried MTX or similar.

It might be different if you live in Scotland or NI -do you?

[Velofan in reply to DorsetLady]

I am under the impression that it is possible to have it privately in England without trying MTX but I haven’t looked into in depth… I was sounding out options when I spoke to my rheumatologist as I don’t like the sound of the MTX side effects.

[DorsetLady PMRGCAuk volunteer in reply to Velofan]

There are a few posts on similar- this is one of two from same member [but it’s mainly because NHS time has run out] but there might be something useful in them…. Plus you can always send a private message via Chat function to find out more..

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to Velofan]

Serious underestimate of cost there - more like double that still. It is also extremely difficult to set up a supply privately as someone DOES get it but has to pay via the NHS I think and it wasn't easy.

[Hightower62]

Hi, if you are only taking MTX for your condition as I am then it is generally ok to drink moderate amounts of alcohol.

I drink what I would consider a sensible amount each week at or below recommended guidelines for the general public and only at least 2 days after taking MTX. I don’t experience any adverse effects in terms of how I feel and blood test results have always been fine but I obviously keep a close eye in particular on liver function.

This is my personal experience and I would stress is not intended to be advice as it is personal choice and every person’s experience and reactions can differ.

[Alebeau]

I unfortunately tried Lefunomide and way too many side effects - this set me back about 2 years in my reduction process and now I have permanent numb feet.

I will stay with just prednisone from here on and I don't care how long it takes to reduce to a reasonable level - currently 8.5 mg after almost 6 years of PMR

[krillemy]

I assume you mean an alternative to MTX as a prednisolone-sparing drug? Anyway, I am on 20 mg weekly, and I have been sunbathing all summer, even in Greece in May, so not everyone experiences all the side effects. I am also allowed to drink 10 drinks a week, but I don't drink at all—just that I could if I wanted to. All that said, it's no miracle, but I do have some benefit, and I think I would need more prednisolone if I weren't on MTX.😄