Here's another. Methotrexate is now used routinel... - PMRGCAuk

PMRGCAuk

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Here's another. Methotrexate is now used routinely to replace or reduce steroids in RA. Have you ever had the choice of MTX for PMR or GCA?

Polywotsit profile imagePolywotsitPMRGCAuk team member137 Voters
91
I have PMR
69
My doctor has never discussed methotrexate with me.
43
I have GCA
33
Yes, I am taking methotrexate as well as steroids.
24
I was taking methotrexate but it didn't suit me.
3
I was told that I can't take methotrexate because of other conditions.
2
Yes, I am taking methotrexate instead of steroids
1
I was refused methotrexate.
30 Replies
sara4 profile image
sara4

I was offered and encouraged to take methotrexate by rheumatology but chose not to take it.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply tosara4

Thanks for this - this was a scenario that I didn't think of when I set the poll. Rather than delete the poll and start again, can I please ask everybody that this applies to to add a comment below like Sara4 has here? That way we can capture an idea. Thanks.

in reply toPolywotsit

I had been on high doses of steroids for approx 18 mths, took Methotrexate for approx 6 months but It did not help me to reduce the steroids very much and it was for that reason that it was stopped.

hege profile image
hege

I have had PMR for 9 years,I also had GCA,and I took Methotrexate to help me reduce my steroids for about 5 years,without any problems,I am now taking 2mgs of steroids daily.

Green_girl profile image
Green_girl

I'm on mtx to try to completely replace steroid, due to the discovery of osteoporosis. Apparently mtx will not affect my bones. I take it very reluctantly and am not sure it is doing very much (maybe slightly more movement?), considering the side-effects to be endured by taking it. My Rheumy has said that there is no research on how to come off mtx, so at the stage I can come off, which will be once I am no longer on steroid and am OK, I will be in no-man's land!! I desperately want to be off all chemicals.

trish29 profile image
trish29

I have had PMR for 9 years . I took Methotrexate for a long time I think for about 3 years. It gave me lots of side effects and I felt quite nauseous most of the time. I was taken off of it because it affected my liver. I'm still on the PMR journey of steroid reduction and hope that one day my medical team will find the right medication for me trish 29

cezzie5 profile image
cezzie5

I have had PMR for several years but only diagnosed with GCA sept this year and have hit a brick wall coming down from 60mgs of pred to 35mgs. My GP has mentioned Methotrexate as the next step but wants to do this via a referral to Rheumatologist.

Polywotsit profile image
PolywotsitPMRGCAuk team member in reply tocezzie5

Good grief! It's about time you had that referral!

Faygirl profile image
Faygirl

I was offered methrotrexate but decline it

Dorene profile image
Dorene

I have PMR/GCA for three years now, Temporal arteritis confirmed by biopsy. I was put on Methotrexate to help wean me off Prednisolone but it caused stomach pains and nausea, I stopped taking it, I was also worried about other side effects.

Narducci profile image
Narducci

I was put on Methotrexate in order to cut down on my prednisolone. It has helped me do that. Regular blood tests needed though to check whether affecting the liver.

Worth giving a try I think if it means you can cut down on the pred as it is so harmful to bones and lowers your immune system so drastically, makes you bruise easily and makes you slow to heal.

Whittlesey profile image
Whittlesey

Hi, I was on medrol, high levels due to GCA. Have had three flares. I began to show symptoms of steroid induced Cushing's syndrome. They reduced the medrol and gave me methatextrate. The combination seems to deal with the GCA. I am taking something for my bones. I have many reactions to medrol, red neck, cheeks, nausea. As the levels are tapered, I have become extremely fatigued. By using both, the Cushing syndrome has been reduced. Am using the anti inflammatory diet.

mickt profile image
mickt

im been started on azathioprine to reduce steroids got gca ,been on steroids 6 mth ,hoping for success ,methotrexate never been mentioned ,suppose its trail and error.

tomasina profile image
tomasina in reply tomickt

Hi mickt, Please ensure you have regular blood tests, fortnightly or at least once a month, as I developed liver problems quite rapidly on Azathioprine and had to come off it. Tomasina x

mickt profile image
mickt in reply tomickt

Aza gave me a rash ,starting MTX on Monday ,still on 20mg pred for next 2 mth.Hope Mtx does the trick.

mollymandy profile image
mollymandy

I have had PMR for 3 years. My GP has never mentioned methotrexate to me, indeed I would never have heard of it were it not for this forum. A couple of weeks ago I saw a rheumatologist for the first time since being diagnosed. He mentioned methotrexate in passing as a future possibility once I get down to below 5mg pred daily.....again!

I was offered it and refused as it is a steroid sparing agent and it comes with more side effects as all medicines do. That meant, to me, I was upping the side effects,which meant that my body which already had enough to cope was being asked to cope with more.

The answer would have been completely different if any of the steroid sparing agents were a cure.

Metho is brilliant for LORA and other forms of arthritis. It was also developed for certain cancers.

GCA Five years and in remission for 2 years. (Remission because no-one can say it is cured).

nordic profile image
nordic

As I am taking Prednisone 5 mg a day because I have PMR. I asked the Rheumatologist whether I could have Methotrexate and his reply was: "It's too early for that."

pandr profile image
pandr

It may not have been mentioned as I have Heart Problems. I have only heard of Methotrexate on this site. I have had GCA PMR for 2 years

AkselOlsen profile image
AkselOlsen

Methotrexate 6 weeks. The worst 6 weeks in my life. Very depressed and badfeeling overall. Never again!!

Sorry, I am not on Methotrexate ,never been offerred it,neither real advice from Rhemy or

Doc. come to that,but she does listen,offerred me counselling when my wife was ill as well,

I just listen to PMRGCAuk,they have offerred advice which I have heeded,listened to fellow sufferes and know whatever I feel is par for the course - thank you friends.I have reduced the Pred from 20 to15 at 1/2 per 2 wks, some times for a little longer,once 34 days when my wife was ill.PMR does not like stress-physical and mental.keep up gentle exercise and swimm 2xwk. thank you all. John

missretired profile image
missretired

Hi, I'm on 25 mg meth (started on 12.5mg) and trying to taper down from 10mg steriods (initially 20 mg) again after yet another flare-up. Been on meth nearly 9 months and feel nauseous and fatigued most of the time now, worse after taking the meth - I doze Sunday away. Also have osteoporosis and take 70 mg Alendronic acid once a week and for good luck, Calecos twice a day. Have upped my folic acid intake to see if that makes a dent in the nausea/fatigue, but not working yet. I seem to have problems getting below 10 mg steriods. Once I get to 9/8 a flare up or at the very least severe pain in the big muscles occur whatever reduction pattern I use. Just need to fool my body!!

nellie78 profile image
nellie78

nellie78. I was put on mtx by Professor Dasgupta and took it along with Prednisolone for about 3 years - but then started to find it gave me a lot of acid burning feeling so came off it (with Rheumatologists agreement). Now down to 1mg after having PMR for nearly 9 years.

mickt profile image
mickt

Yes ive pmrgca start methotrexate on monday

lyndyloo2 profile image
lyndyloo2

I was diagnosed with PMR in 2004 (aged 43) treated with pred, but was unable to reduce below 5mg without relapse. Eventually saw a rheumatologist in 2009 who suggested methotrexate, I was able to cease the pred and now take a low maintenance dose of MTX.

paah profile image
paah

I had a bit of a shaky start when I stared Methotrexate due to a bladder infection that required anti-biotics, as you are probably aware Metho and anti-biotics don't work to-gether so had to stop taking Metho. Now we are back on track and have been for 5 weeks and I think the dose of 7 1/2 mg's/wk have allowed me to reduce Preds from 11 mg's to 10 mg's per day and I don't think I could have done that with out the aid of Methotraxate.

Vpankhurst profile image
Vpankhurst

I was on methotrexate but stopped by rheumy as not being effective and put on Leflunomide for last 2 months

5lupins profile image
5lupins

I have been on 20mg of methotrexate for four years, I was give it after 6months of mycophenolate. I am always tired , worse as I have reduced steroids to 2.5. Will not let me reduce metho aand has given me antriplyne. These make me very tired, so don't know what I will do now. Have just done a session of physio with people with knee replacements!!!!

maria40 profile image
maria40

I was offered methotrexate but declined after reading up about it and decided to stick with the devil I knew.

Deb61 profile image
Deb61

It was a horrible experience I felt terrible and lost most of my hair

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