Hello, I just wondered of other's experience taking MTX & Prednisolone for GCA & PMR, how long before you knew it was actually helping your condition?
I have been on Pred since January, had lots of complications along the way, gastric issues, GI bleeds etc and GCA flares so it's been hard to taper, kept having to go back up to high dose. On MTX injections to bypass tummy since May to assist with reducing Pred and happy to say I'm successfully down to 22.5 finally, hoorah!
I know it's not been long since I started MTX and my body seems to be tolerating ok after a shaky start with side effects. The upset tummy not too bad and nausea better. Losing my hair in buckets but I also thing Lansoprazole did that and I've stopped those but hair loss still terrible. Not nice but least of my problems I know. My mobility is awful, my whole body is like a lead weight and I now only walk a few steps and legs too heavy and I'm breathless but I do have copd/asthma so other issues contributory.
I've started to find that my mobility bit better for the first couple of days after taking MTX but then it goes back. I also have arthritis so have pain from that and that has affected my mobility. I've had a few falls lately so not doing brilliantly.
We're all different of course but just wondered others experience with starting MTX and how you got along with it and how long before you noticed any difference?
Thanks for any input.
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Have a look at the Methotrexate information in FAQs on here. I think it takes about 3 months to kick in. You really are symptomatic, so sorry for you. 💐
Hi. Yes I've had a look at that thanks, I know they said about 3 months and I'm coming up to that timeframe. I just wondered how others felt and realised it was working for them. I'm just not sure!! Thank you for replying.
When l had MTX the first time l tapered by 1mg per month from 18mg to 10mg & then from 10mg to 7.5mg without any difficulty - so obviously the MTX was working……
Will finish reply later - Grandson has just woken up!
Thanks MrsNails, I'll read that post. I've been on such high doses Rheumy and I keen to get the Pred down and since MTX been tapering at 2.5mg and it's been ok, usual Pred withdrawal but no GCA flare so that's very good this time for me! I have had another GI bleed recently and ended up back in hospital so had to go back up to 30mg Pred but I'm now down to 22.5mg so happy with that. Be interested in how you felt physically on the MTX and any notable difference that it was working for you. Thanks so much for taking the time to respond. Enjoy time with your Grandson.
Hi, l was shattered last evening so didn’t get chance to reply, we had a lovely day with Theo - he’s an absolute delight!
I have a fair experience of coming off MTX so l know that it works for me (not the first time because of Chemo etc)
But the 2nd time they stopped it because of my liver levels - l carried on for about 6weeks, then it hit me & all PMR Symptoms returned - so from there it was a steady increase in Pred & l was off MTX well over a year - a year which set me back more than l could have imagined.
I’m now on Metoject Injections at 25mg & have no side effects from it at all - I’m back up at 12.5mg of Pred 🤦🏻 I was doing really well on 10mg & tapered to 9mg & it set the PMR off again.
Unfortunately, l injured my Brachial Plexus last year, l have had two recurrences & l now have an impingement in my other shoulder. You might have read about my spectacular fall - flying across the room, only stopping when l reached an oak unit! Boy, did l have some bruises! So l think all of that has impacted yet again on the PMR……
So it’s hard to say it’s working until you stop it & then you realise it was helping.
Are you on Coated Prednisolone & injectable MTX because of your GI issues?
Oh goodness, I didn’t see about your gymnastics!!! That’s not good, all these things set us back, I do hope you’re healing well. I’m going to take your suggestions to my Rheumy at my appt next week. I’m currently on 20mg metoject which after the initial settling I feel my body coping except odd nausea and the hair!! I’m on coated Pred down to 22.5mg which is lowest I’ve managed so I’m really pleased. Before the MTX that wasn’t possible so I guess that shows it’s helped me. My mobility on the other hand is awful so another conversation with Rheumy on that subject. I’m still waiting on couple of referrals as she always wanted to check if underlying cause that sparked GCA PMR etc. I’m 53 next week, feel like I’m 103 !!! Thanks very much for all your kind input. Much appreciated x
Glad you had a lovely time with Theo, they know how to wear you out!! We’ve 3 girls and our eldest expecting in January so we’ve that to look forward to x
I read your journey, goodness you've been through the mill, I'm so sorry! Thank you for sharing and all your very useful advice and tips. I do hope that you continue to be on an even keel and doing much better these days? x
Of course you are on high doses of pred - you have GCA and only 7 months in. GCA flares in the first 18 months if the pred isn't high enough.
The UK GCA guru Prof Dasgupta is of the opinion that MTX doesn't do much in GCA - although Chetan Mukhtyar at the Norfolk and Norwich hospital is very keen on using it and says it works well,
I think some people find it takes more than 3 months - in inflammatory arthritis it can take 6 months to make any difference. In PMR, a study done in Italy found it took a year to see a significant difference in the cumulative dose of pred. Whether either of these findings can be extrapolated to GCA is unknown.
I felt awful on MTX - so ill I wasn't prepared to put up with it in the long term and stopped after only a month. My hair fell out in chunks, not just thinning! How much folic acid are you on? Many rheumies only give 1x 5mg while others use up to 6x 5mg and it should improve the side effects due to replacing the folate in the body that is destroyed by MTX. I was desperately tired - could barely put one foot in front of the other - and ached worse than I did with untreated PMR.
Hi PMRpro. thank you for messaging. The plan for MTX is to try and get the Pred down as I've so many other issues, particularly gastric. So far I'm coping ok on the MTX it seems and my taper has been ok with no flares at present. The Rheumy wants to get me down to 20mg Pred if possible alongside the MTX at 20mg and stay there to stabilise before looking at tapering further on Pred. The folate I take 3 days a week and that seems ok. I've more bloods this week so will be interesting to see where I am. I think that supposedly from what I'm told the PMR should be under control at the med levels I'm on. I have arthritis in my cervical spine, hips, knees and ankle and my shoulder and hands. So I think that the pain I have is from the arthritis, but I'm not sure of course but imagine that seems correct. My body aches and is extremely heavy. I take a few steps and then my legs are like lead and I find it hard to lift them to walk. I had another fall couple of days ago when my hip just gave way suddenly, so not sure what that's all about. Awful spasms in my hand which changes shape and goes like a claw, it's so painful brought tears to my eyes. I'm the same as you were with the hair loss, not just thinning, it's massive chunks at a time, very upsetting too.
Hi, if you are still at 22.5mg Pred, I have doubts that your pains are OA, that level of steroids would still be masking other pains. Found that mine didn’t return until I was much lower….around half that dose.
Plus as PMRpro says at only 7 months in, much more likely to be GCA making you feel like you do …
Ah ok, so I was thinking must be OA as the Pred should have the PMR under control but you think the joint pain GCA related? I’ve only one eye same as you, my good eye shocking because of accelerated cataract but I’ve not had another GCA flare since starting the MTX and reducing. Getting cataract done later in the year as long as my GCA stable.
Knees are not usually affected by GCA - it’s usually head maybe shoulders if cranial - and torso if extra cranial - see picture. Knees could be PMR, but at the dose you are on would expect it to be high enough to keep it at bay. To be honest a bit flummoxed what is actually causing knee pain..but if your body aches then perhaps it is PMR….any chance of trying a small increase just to see if that makes any difference.
Alternatively you could try painkillers to see if they make any difference…..if they do it’s probably not GCA or PMR. But don’t try both options at same time…
Good luck with cataract replacement- had mine done 8 years ago when on around 9mg
Have you tried magnesium supplements for the hand cramps? And I would ask to up the folic acid, it might reduce the hair loss. I wouldn't say 3x weekly was OK if the hair loss is that bad!
I stopped all the supplements except vit d and I take Adcal with advice from Rheumy as i used to take quite a few. Had so many gastric problems was reducing my intake and interactions etc. I’ll speak to her about magnesium as read it can interfere with MTX and thanks for folic advice too, I’m sure they’ll up it. Thank you so much.
It is magnesium citrate which seems to be the problem - and not because of the magnesium but the citrate part - a few citrate salts are used to change the pH of the urine and it is advised not to mix them with MTX. So do speak to the doctor,
You can take Folic Acid 5mg x 6days per week - not on MTX days & that may help with your hair - also you can take a Biotin Supplement- just check with your Consultant that it’s OK
like PMRPro says, you can take folic acid up to 6x a week. I started on 1x and my hair fell out in clumps till I lost at least half of it, dose increased to 4x, wehich didn't help, then finally to 6x and the hair loss reduced dramatically. So if you're only on 3x, it's probably worth asking to increase it. Winter is cold without the usual amount of hair!
Not really any more tips. Apart from minor tummy troubles at first, like you, the only problem was the hair. But there was no obvious benefit either.I was only on it 8 months, but it'll take a lot longer than that for the hair to grow back. I was glad when a mistake by the chemist led to my being allowed to stop taking it.
Sorry to hear of all of your health woes…lots of things to juggle all at once! Hope some of the suggestions made provide you some relief.
I have had PMR for 4+ years and I started injectable MTX Jan. 3 this year to help reduce my pred dose (I was stuck at 9mg for 2 years). I take 25mg of MTX and 25mg of folic acid weekly.
Thus far I’ve not had many side effects at all and was able to start lowering my pred dose after one month on it. My first taper down to 8mg (over 6 weeks), was no problem. So I understood it was working from then.
I did have to stop it for 3 weeks while taking antibiotics for diverticulitis and having a raspy chest, and my PMR symptoms returned. This was another indication it was working. When I went back on it (around the 12 week mark), I definitely felt it “kick in” resulting in having a particularly great week physical wise.
Since then I’ve started to taper only .5mg every 6 weeks as getting below 7.5mg has resulted in mild return of symptoms (which may be pred withdrawal). I also have more muscle fatigue when walking and doing exercises in the pool and recently experienced DOMS a few times when overdoing it. As I lower my pred dose my pre-existing OA in my knees is returning which is to be expected. I am really listening to my body and hoping by lowering slowly, I can get down to 5mg, which feels like it was worth going/staying on MTX.
All in all I can’t complain thus far. The up side is that I’ve managed to lose more weight and stay somewhat active. Lowering my pred dose is also good with regard to my gastro issues (diverticulitis). One downside is the risk of infection and on-boarding another immunosuppressive medication during COVID. My hubby and I are currently recovering from it and I’m taking longer to get over it. It also means stopping the MTX for 7-14 days to help the body fight the virus, fingers crossed the PMR symptoms don’t return. If I choose to get another booster it’s recommended you hold the MTX for 14 days after to get a better response.
I do take biotin daily along with the 25mg of folic acid weekly and this has helped with hair thinning. I count myself fortunate that I’ve not experienced fatigue and other terrible side effects others have reported. It just seems that MTX seems works for some people, leaving the others suffering.
Here’s hoping you have “success” with it and some relief from the aches and pains. Sorry for the length of my response.
Thank you so much for your response. I really appreciate everything. So interesting to hear your path. I also have diverticulitis recently diagnosed after colonoscopy. I’m awaiting biopsy results for suspected IBD so that’s another factor. It’s all spiralled since the GCA in Jan. Yes fingers crossed I start to feel the benefits soon. Thanks affine and I wish you well on your continued journey 😀
Hi, I’m sorry you’ve been suffering.I’ve been on a journey with GCA since October 2019, where I wasn’t very successful reducing down pred, with numerous flares which took me back up to higher numbers. I would find this quite demoralising.
My rheumatologist decided to put me on mtx and to be honest I was sceptical. I’d managed to reduce back down to 15 mg of pred but hadn’t been able to reduce down without the GCA rumbling in the background.
Eventually it was agreed for me to orally take 20mg MTX and because of nausea take the folic acid 6 days a week. After that, to be honest, with the support of the Rheumy nurses and the change to an understanding specialist to reduce half a mg every month to 6 weeks or more if necessary, I’m now down to 2.5mg pred. I think for me MTX has, so far, done it’s job.
I did complain about severe pain and lack of movement in my shoulders which, after ultrasound was bursitis and injected. I have also been diagnosed with fibromyalgia.
Hi they say 12 weeks but for me it was about 8 or 9, can’t quite remember, but then I managed to reduce pred from 11mg to 6.5mg in 6 months which would have been impossible before. Prior to MTX I found it so hard to reduce and had real problems even on the slow taper.
My experience with it so far has been good. First few weeks lost a fair bit of hair, but went on folic acid 6 days a week and biotin and that sorted it. Still thinner than it should be at the front but it’s doing okay. Haven’t experienced (to date) any issues so far although I have an appointment this week about an issue which may or may not be related. I know everyone is different but it’s helped me get down on the pred quickly. Personally I’m pleased I went on it. I must admit I was very reluctant and anxious about taking it.
I was very anxious too but I do get overwhelmed these days since being ill. That’s encouraging thank you. I’m really hoping I stabilise too, so far so good with tapering and no GCA flares. Just need to sort my gastric issues and body aches!! You’re doing amazing, hope it continues for you 🙏
Hi, started MTX a year ago, diagnosed with PMR in 2015 and did well with low doses of Pred but couldn’t get off and stay off. Saw rheumie 18months ago after having bilateral stiff painful knees - a first for me. Now diagnosis changed to seronegative inflammatory arthritis with polymylagic onset so not exactly relevant to your GCA use. Have now been off Pred for almost three months and feeling fine, taking 15mg MTX weekly. Had hair loss after a couple of months but increasing folic acid to 6 days a week and starting biotin stopped that and hair regrown. Not sure when I felt MTX starting to work, I did stop it for two weeks after my Covid booster early December (four months after starting) and did begin to feel the achey shoulders and thighs again so presume it’s doing something. So far have been pleased I’m on methotrexate, I was very against trying it. Everyone is different and I’m well aware things can change.
I’m sorry that you’re suffering so much . I started MTX in July 2019 , having got stuck trying to reduce from 15 mg prednisone. My starting prednisone dose was 30 mg . When they increased my methotrexate from 10 mg to 15 mg I felt dreadful and wanted to stop , but they increased my folic acid from 1 x5 a week to 6x5 and it has made all the difference - I was able to tolerate it . I managed to get down to 8.5 mg prednisone and then I caught covid recently .I had to come off the MTX for three weeks and my PMR has come back with a vengeance . I’m back up to 15 mg prednisone but I’m really struggling . I saw my original NHS doctor privately last week and he’s told me to reintroduce the MTX now I’m covid free , slowly increasing it to 20 mg weekly , and reduce the prednisone as and when I can . He has suggested alternative drugs if I can’t cope with an increase in MTX.
With hindsight I think the MTX certainly helped me reduce my prednisone, and I think that a combination of covid and not taking the MTX has caused my flare .
On balance , I think MTX has definitely helped me . I hope all our posts are helping you make a decision !
I’m currently COVID positive for a week now with mild symptoms. I am stopping MTX for a week, but wondering if I should for a longer time period.
I’ve noted recommendations to stop it anywhere from 7-14 days (CDC), but also noted you stopped it for 3 weeks. Is it because your symptoms were more on the severe side? Did you increase your pred dose while sick with COVID? I did as instructed by my GP the first time I had it (Delta strain in May, 2020), but have not yet this time around as my symptoms are much milder. But I’ve also stopped tapering my pred dose while my body fights the virus.
Hiya ! I stopped the MTX for 3 doses but I was only Covid positive for 2 weeks ie I tested positive on the Monday so didn’t take my MTX , was positive the next Monday and also the following Monday , which is 3 Mondays but 2 weeks time wise . When I first rang the rheumy advice centre all they told me to do was to stop taking the MTX whilst I was testing positive . Then a few days later I experienced a massive flare - couldn’t turn over in bed or get out of bed flare - so they told me to increase my prednisone dose from 8.5 to 15 mg for a couple of weeks and then reduce ( drastically🙄) .I knew that I was never going to be able to do that which is why I’ve seen my old rheumy privately.
So from what I’ve learnt , stop the MTX whilst testing positive and if you have a flare , double your pred intake .
Mrs Nails has a good link link which you might find helpful . Sorry I don’t know how to forward it to you 🙄but if you message her she’ll give it to you .
Hi KatieYes definitely thank you, all of the posts and encouragement on here helps, I really appreciate it. Thank you so much for taking the time to reply. I do think that the MTX is helping with my taper especially after comparing with you all. I hope you continue in the right direction, so sorry about the Covid setback, hope you are feeling much better. Best wishes 😊
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