Methotrexate

[Alliekat65]

Hello peeps

I appear to be having side effects from pred which now May include diabetes

I've had thrush innthe mouth . got moon face.. scalp tenderness headaches mood swings night sweats and I'm carrying my own rubber ring around my tum. so....my opthalmology lady thinks I MAY do better on mtx . I've read about it. talked to my lead nurse and opinion appears divided.

so ..is anyone on it. tried it..

I have...suddenly got a spare rheumatology appointment for Thursday so ANY help AS ALWAYS will be appreciated.

Hope you guys are well x

[DorsetLady PMRGCAuk volunteer]

Plenty on it… but not as a replacement for Pred [only to help reduce that more quickly]. There is a whole section in the FAQs about MTX - and now you have asked plenty of related posts.

Most of the side effects you describe are common and will recede as the Pred dose reduces… but I am concerned that you mention scalp tenderness - that isn’t normally a side effect of the drug , but it a symptom of GCA… please get that checked at appointment..

[Alliekat65 in reply to DorsetLady]

thank you she has said she thinks it's a flair

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

So are you treating it as such? Or waiting to see Rheumy?

Our advice is here - but Rheumy may think differently -

healthunlocked.com/pmrgcauk...

[Alliekat65 in reply to DorsetLady]

think I'll wait see rheumatology they trying get dose down but last time I started get urged vision

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Yes - wasn’t suggesting you tried -just so you were aware… and why are they rushing you down?

[Alliekat65 in reply to DorsetLady]

yhink cause its been 6 months and ive been as high as 65..never got down below 20 it's all so confusing. that's why I always want to havebthebhelp and advise on here

[DorsetLady PMRGCAuk volunteer in reply to Alliekat65]

Many have been at 60mg - and above! Difference circumstances I know, and I’m not wishing it on anyone, but I was at 60mg for 8 weeks following 2 weeks at 80mg.. never killed me off which some seem to think it will.

But I digress… and there is little point in rushing you down on Pred [unpleasant though side effects may be] especially in GCA - in the first 6 months flares are very likely..and potentially dangerous re your sight.

[Alliekat65 in reply to DorsetLady]

this is WHY I love this site lived experience

[PMRpro Ambassador in reply to Alliekat65]

Most people I have known with GCA took about 6 months to get to 20mg - and that was from a starting point of 60mg and a steady slow taper without flares because of rushing the taper.

This

rcpe.ac.uk/sites/default/fi...

takes 4 months minimum. The author is now Professor at Luton & Dunstable Hospital and specialises in GCA and is still using it.

GCA is actually very prone to flaring in the first 18 months - the first 6 months it is still going pretty full blast and many patients need more at that point.

[sidra1968 in reply to Alliekat65]

hmm, I was as high as 35 (even took 40 on a cruise), and now after over 1.5 years just down to 15 mg a few weeks ago. My point is it's only been 6 months for you? I think they should give you a little more time. I refused the methotrexate, for now anyway. He didn't even offer it again at the appt months later, like he plum forgot. I wasn't surprised, he doesn't seem very "into" PMR, and think he was surprised when after he tested me for everything else, that nothing showed up. Some of these rheumys appear to REALLY want it to be anything else other than PMR.

[SnazzyD]

What dose are you on?

[Alliekat65]

20mg

[SnazzyD in reply to Alliekat65]

I do remember being 6 months in and it felt never ending. It took 3 months to feel overwhelmingly ‘Preddy’ ; everything felt congested, my brain, neck ,midriff, eyes squiffy, sleep deprived, a bit mental and weak. 5 months in and my hair fell out almost entirely (illness trauma I think) just before a holiday during which I had a horrible wig in 40C in Rome, face looking like a polished apple. Those holiday pics have been mysteriously deleted. It was easy to feel that I had had enough. The only thing I could control was my carbs and blood sugar and I was damned well going to do it. It also helped thrush. It can be grim for the first year for sure and it is par for the course for most. You also need to give your body all the rest and good diet it needs whenever possible.

If you have been on 60mg for a bit, 20mg now doesn’t sound too far off the mark to be honest. The first year is a vulnerable time for flares with GCA and rushing down isn’t a good idea. It is easy to think Methotrexate will save you from the Pred cloud but it doesn’t mean Pred will be just stopped as it can’t be and it is also an immunosuppressant so it ain’t coming for free IF it works for you. This is a tough chapter for sure.

[Alliekat65 in reply to SnazzyD]

Thank You . it's the opthalmology clinic that keeps saying meth not rheumatology that has said methotrexate so. omnseeing them tomorrownl

[PMRpro Ambassador]

It doesn't replace pred - it MAY allow you to get to a lower dose of pred, for a small cohort it works brilliantly but for others it doesn't - I gathered recently that is a genetic thing, if you don't have the gene, tough! You have to try it to find out though.

For some it just makes them even more fatigued or even downright unwell. And for me it magnified pred adverse effects with me experiencing some I had never had with just pred, I was ravenously hungry, gaining a kilo in a month that took MONTHS to lose again! I ached all over and my hair was coming out in small clumps. I took it for a month and stopped, I couldn't cope with it.

[Alliekat65 in reply to PMRpro]

oh my love I'm so sorry..yes my lead nurse was explaining the side effects I guess I'll see what they say

[DijonMustatd]

Hi

I have been on methotrexate for about 9months, I believe it has enabled me to reduce my prednisone dose to 6.5mg, where as on three previous occasions I have experienced flares after reducing to 7mg on my taper journey. So, what I’m trying to say is, i believe its helped me taper to below 7mg without flaring.

So that is a great relief. I must say I was initially v reluctant to take it. But I’m glad I did.

But in terms of symptoms, initially I was on 10mg of Methotrexate without any symptoms, my rheumatoid spec then after a few months increased it to 20mg. I did start to get some symptoms then, not too bad, but kind of things that made me feel discomfort, so after reading some things on this site, I dropped it to 15mg - and generally all is ok. Just some burning in my throat a day or so after taking it - so not so bad. Otherwise no symptoms.

That’s my journey anyway. Best wishes for yours.

[agingfeminist]

Have you cut carbs? no bread, rice, potatoes , pasta, nothing with sugar (or sweetners), no fruits high in fructose berries are best). it stops weight gain and impending diabetes. I was on 50 mg. 5 years later now at zero (for a month) but still eat low carb diet (no diabetes) loads of vegetables, no sugar or sweetners, cakes or biscuits. Very little bread. A really healthy diet...I think it helps (or rather, I hope it helps). All the best!

[Alliekat65 in reply to agingfeminist]

Hello yes I've lost 8lb but went on holiday and gained 2. trying hard with cauliflower rice and stuff like that.. ibstruggle not to eat digestive biscuits but have cut down to 1 low sugar one a night. I also work 12 hour shifts so watching what I eat can be difficult

[agingfeminist]

you are doing well...strips of carrots, cucumbers, peppers, apples for snacking? It takes a few weeks to wean yourself totally off biscuits etc....some people say 3 weeks. Worth toughing it out. You have already done most of the hard work.

[Freshairfiend]

Very late, I know, but I have been in methotrexate for about two months now with no side effects. I had too many with preds and could nit reduce without flares. After prescription, i5 takes two months or more before reducing preds. I was ‘only’ on preds for six months before referral. I’m so glad I did. I trusted my instaincts. Wishing you well.

[Alliekat65 in reply to Freshairfiend]

they dropped me to 15mg pred and I'm now on methotrexate and no flare...so far ..I got awful side effects from pred so always hopeful methotrexate won't going down to 17.5 next weekfeels fast drop but I'm ok atm

[Freshairfiend in reply to Alliekat65]

Great news!

[Alliekat65]

SO..THE MTX pills after 3 weeks went straight through me literally. after taking them on a friday. i had diahorrea every sat sun and mon...called rheumy hotline and so next week I'm starting on weekly injections. I'm now down to 10mg of pred and will let ya know how I get on

[PMRpro Ambassador in reply to Alliekat65]

Hope it is an improvement. But personally - whatever the adverse effect, losing 2 days of your week to them is hardly a positive is it!!!

[Alliekat65 in reply to PMRpro]

no it wasn't I actually was think of stopping the MTX so..hopefully as its not going into my stomach it will have the positive without the negative.. but I can only wait and see. I couldn't have stayed on the pills like that