methotrexate: I have been on prednisolone since... - PMRGCAuk

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methotrexate

bookbear68 profile image
74 Replies

I have been on prednisolone since last August for GCA/PMR and am getting down to lower levels (10mg). Rheumy wants to add methotrexate as need to get off steroids due to osteoporosis.

I read all the leaflet last night and scared myself to death! Has anyone got experience to share of this drug particularly side effects.

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bookbear68
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DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

H,

Plenty of info in the FAQs - and now you have posted related posts to view--

healthunlocked.com/pmrgcauk...

SheffieldJane profile image
SheffieldJane

I wish there was a guarantee that Methotrexate would help. I agree that the side effects listed are scary but they will include those for Methotrexate used for chemotherapy in large doses. Dr Sarah Mackie believes in it for us and she knows more than most. She said she would rather take it than Pred as would other Rheumatologists. However, I declined and got down to 5 mgs with the help of Actemra/ Tocilizumab . Have they tried you with that? With Methotrexate you can come off it without tapering if it doesn’t suit you.

bookbear68 profile image
bookbear68 in reply toSheffieldJane

Thank you that’s useful info about Actemra they have not suggested that for me

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tobookbear68

You need to try other drugs before Actemra/TCZ is suggested.. there's a strict criteria for getting it.. so MTX and probably Leflunomide first.

bookbear68 profile image
bookbear68 in reply toDorsetLady

I thought there probably was an order and criteria thanks

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tobookbear68

Unfortunately yes -guidelines quote -

People with relapsing or refractory giant cell arteritis

So you have to jump through hoops and presently for only 1year -although charity and some prominent Rheumies are trying to change that…

Bennijax profile image
Bennijax in reply toSheffieldJane

Actemra is not give by the NHS in the UK unfortunately. Privatley is it about £1000 a month?

SheffieldJane profile image
SheffieldJane in reply toBennijax

I was given it on the NHS having been diagnosed with GCA and declined other steroid sparers. I was prescribed injections to last me approximately one year. I got down from 40 mgs of Pred to 10 mgs swiftly without issue. I thought that this was still policy.

It is not given for PMR. Is that what you mean?

Bennijax profile image
Bennijax in reply toSheffieldJane

yes, I meant that for PRM

PMRpro profile image
PMRproAmbassador in reply toBennijax

That isn't correct. It IS funded by the NHS for certain indications, unlimited in inflammatory arthritis, and for 1 year for restricted situations in GCA, It CAN be paid for privately but it is very complex and is arranged via the NHS. I am told the restrictions are more relaxed in Scotland.

Bennijax profile image
Bennijax in reply toPMRpro

Thank you - I knew is was given for inflammatory arthritis but I've seen two private London based rheumies, and asked the NHS rheumy, each told me I am not eligible for TCX just to taper for PMR despite osteoporosis and unable to tapler, now 4+ years on preds.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBennijax

It’s not been approved in UK for PMR - the initial trial pre 2018 only included GCA

PMRpro profile image
PMRproAmbassador in reply toBennijax

As DL says - not approved for PMR.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Forgot to ask - are you diagnosed with osteoporosis - or are you just assuming you will get it? Are you on bone meds ?

bookbear68 profile image
bookbear68

I have severe osteoporosis with multiple fractures currently 4 months into Romosozumab treatment

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply tobookbear68

Okay thanks - perhaps you like to put that and a bit more info on your bio please -stops us having to ask.

See this if not sure

healthunlocked.com/pmrgcauk...

tangocharlie profile image
tangocharlie in reply tobookbear68

I'd forgotten that even though you kindly responded to my post on spinal fractures, well done DL for realising that and now I can see whey they'd be so keen to try anything to get you off steroids quicker.

bookbear68 profile image
bookbear68 in reply totangocharlie

It does seem a race against time with me and the steroids were a definite factor in my recent back fractures. We are all so different and so complex but it is so useful to have others thoughts and views thank you

SnazzyD profile image
SnazzyD

It’s a tough one. Methotrexate is a bit like Pred when you read the essay that comes with the box which can be disconcerting! Remember it is also used in chemo in higher doses. As per usual people vary with their experience and you should get regular blood tests to check that your basics are ok. When we throw up our hands in horror here is when people are put on it when they are doing well but the doctor just doesn’t like the idea of Pred. As always with these things it’s a balance of risk and there is a good reason for you.

It may not work in your case but at least you are already at 10mg which is good going. The doctor won’t know if it it’ll work for you and if you find you can’t tolerate it you can just stop; it is up to you. It might be fine though.

One thing that might slow down your dose descent is if your adrenal function doesn’t recover at the speed that your consultant wants or assumes. That will remain to be seen once you get under 8mg or so. In that case you will have to slow down your reduction anyway, Methotrexate or not.

Lots of uncertainty that isn’t nice but all you can do is take the first step.

bookbear68 profile image
bookbear68 in reply toSnazzyD

Thanks this is all so helpful. It’s all about risks and benefits isn’t it and the steroids are the most negative thing for me because of the state of my bones. I can stop if it doesn’t suit. Living with uncertainty is always the challenge and as you say all you can do is take the first step. Today that has been seeking information and I feel much more prepared than I did this morning. Thank you

tangocharlie profile image
tangocharlie

Personally, I don't think MTX should be added into the mix at this stage as you may well be doing fine without it at this stage. 'if' the average time to have PMR is 2 years then to be on10 at this stage is OK unless you have other things going on or steroids are a particular danger eg osteoporosis and hat might be why they are worried about steroid levels. But my bones were fine for the first 10 years despite high steroids. There is no hard evidence that MTX does anything for PMR, a trial called PMR Sterling that is just startiing up aims to answer that question once and for all as the answer, as Dr Mackie says, is that we just don't dont know one way or ther other. Though she seems to think it can help many people. Just cos it works for some rheuamtology conditions doesn't mean it works for PMR. If it were me, and I have been in this position, I tried MTX a few times but for me, not everyone, the side effects were horrible adn I'd see how you get on with reducing steroids over the next year and then decide. I'm no medic, just my thoughts based on 12 years of PMR, being messed about too much and used as a guinea pig for various DMARDS. I think though that Hydroxychloraquine is helping me, that could be worth a try, though again there is no research on it

tangocharlie profile image
tangocharlie

Just another thought, if you are going to try MTX and can get to appointments in Leeds it would be worth you signing up for the PMR-Sterling trial to help research and as a bonus you'd be under the guidance of Dr Sarah Mackie, an amazing rheumatologist.

I dound the details: As above, she is looking for people who have PMR, don’t have GCA, and have had trouble tapering their steroids. And would be ok in principle to consider trying methotrexate. If they could come to Leeds then easiest to email her direct on s.l.mackie@leeds.ac.uk . If they are already on methotrexate then they would not be eligible to take part. More information about the study can be found at

fundingawards.nihr.ac.uk/aw...

Please respond direct to her if interested in helping research

Oxfordboy2 profile image
Oxfordboy2

Hi,You have had lots of useful information regarding PMR and Pred so I thought I would share my experience of methotrexate with you.I do not have pmr and am not on steroids so my condition it a little different to yours.My diagnosis was GCA and at the time I was on no meds.I was prescribed MTX and this was two and a half years ago approx.For the first 6 months I had no side effects and then some kicked in.I was very fatigued and the slightest effort made me tired.I felt very nauseous for the whole time between doses so no relief.My hair began to fall out and became finer and thinner.I suffered from mouth ulcers which were very frequent and had a very dry mouth.I developed very bad dry eyes and the MTX stripped my body of B12.For some reason I also developed spots on my neck and scalp.It has also made my skin sensitive to the sun.I started on 20mg MTX then after a year my rheumatologist allowed me to reduce to 15mg and the change it had on some side effects was miraculous.No more nausea or fatigue which makes life more bearable.Not everyone suffers from these side effects but my experience may help you decide if you want to try it.Good luck.

bookbear68 profile image
bookbear68 in reply toOxfordboy2

Thank you for this. You well describe all the side effects I fear and having already got mouth problems, hair loss, dry eyes, sun sensitivity and extreme fatigue without methotrexate I do wonder how much more I can take. However I have already taken on drugs I never thought I would and if this can work I will have to try it. I am getting lots of information which will help me decide. Thanks for replying and good luck with your journey

Bennijax profile image
Bennijax in reply tobookbear68

Bookbear, I sympathise greatly, I'm similar and not looking forward to Methotrexate ,i can't take any more fatique, might as well put me down like a dog in pain.

I did have a consultation in February 2023 with Professor Rodney Hughes - but I didn't take anything he offered up to me at the time.

May I share what he wrote to me? it is below.

March 5, 2023

Dear Mrs ......

Thank you for recent e-mails. Just to clarify, plan number one would involve an 80mg intra muscular Depo-Medrone injection and 2 days later reduce from 12mg to 11mg of Prednisolone for 2 weeks and then to 10mg for 2 weeks. Depending on how you got on you could then at a suitable interval (usually 3months between injections) rather doing them too close together. Too much intra muscular steroid then over faces you with steroids again.

The second plan would be to start Methotrexate as a steroid sparer. The wait between the first injection and the 2nd injection would normally be 3 months. I will write again to Dr ...... to make it clear that if possible the intra muscular Depo-Medrone injection would be given from the Surgery.

Yours sincerely,

Professor R A Hughes MA MD FRCP, Consultant Rheumatologist & Physician

.........He also sent me a much more detailed letter in February after the consultation. I didn't act on his recommendations as I was concerned about adding more preds in the form of depo-medrone to taper.....

Regarding the methotexate, he would start me at 15mg with Foic acid taken the day after.

My NHS rheumy whom I saw yesterday would start me on 10mg first, then bring me up to 15.

PMRpro profile image
PMRproAmbassador

No guarantees it will get you any lower than you are and doesn't replace pred, most people need some pred. It almost finished me - by week 3 I had half a day without overwhelming fatigue before the next dose was due. I was permanently hungry and gained a kilo in a month - more than with prednisone, and my hair fell out in chunks. That said - it does work brilliantly for a very small cohort of patients and you have to try it to find out if you are in it.

If they are that desperate - have they not submitted a request for funding for RoActemra? But even that isn't guaranteed to get you off pred - only 50% of patients in the clinical trials got off pred in the year it lasted. There are at least 3 different mechanisms creating the inflammation and RoActemra only works for one.

bookbear68 profile image
bookbear68 in reply toPMRpro

I have been told I am complex as there is so much going on. I think metho is the starting point but I have an excellent rheumy who is looking after me for the GCA/PMR and the osteoporosis and I know will do her best for me. I trust her judgement so when I’ve come to terms with it and cleared the diary I’ll have a go. I’m sure she will have alternatives if I struggle but I am making a note of all these other drugs for future reference. I’m sorry you had such a bad time with it I hope they have found something better for you.

PMRpro profile image
PMRproAmbassador in reply tobookbear68

I don't live in the UK and here in Italy my rheumy was able to use RoActemra for PMR that was taking 19mg to manage after being on pred for 13 years. It is one of the things keeping me here - my medical care here is unlikely to be matched by the NHS.

Noni71 profile image
Noni71

I have GCA and LVV not PMR so a little different from you but Methotrexate didn’t work for me in respect of I couldn’t tolerate it. It played havoc with my liver and even at lower doses my blood tests showed raised liver function results. I didn’t have many other side effects except fatigue but now I’ve stopped taking it I feel much better. I guess you need to try it to decide whether it’s for you or not.

Rimmy profile image
Rimmy

Hello I haven't been on HU for ages but have had PMR/GCA for several years. Symptoms are pretty minimal these days except for fatigue on and off. I have taken 10mg of Methotrexate a week for the last couple of years but still on 8.5mg Pred. I stopped the Methotrexate for a month or two to see if it was making any difference at all and I'm sure now it did with minimal (if any ?) side effects - but I still need that dose of Pred. But I now think it is a helpful medication and perhaps a steroid sparer if even more effective for some. Regards Rimmy

PMRpro profile image
PMRproAmbassador in reply toRimmy

Was wondering where you were the other day!!!!

Rimmy profile image
Rimmy in reply toPMRpro

Hello PMRpro - how kind of you to remember me. Yes I am still around but have not been looking at HU for awhile as trying to 'pretend' I guess that I have really 'recovered'. I say 'pretend' cos secretly I think I never really quite have with lingering symptoms - but actually not too bad and likely now blurred with general 'ageing' stuff at about 7 years later. I had relied on the disappearance or remission of PMR/GCA at around the 6-7 year mark - but that is silly of course as we are all individuals in the end. But I am grateful to not be beset now at 72 with too much else other than the kind of stuff which everyone likely eventually has and which can sometimes mimic PMR/GCA symptoms ha ha !! BUT how are YOU !!!??? you mentioned Actemra - which I have never tried - but which seemed to have worked well for you ? I would be interested to know. Nice to talk with you again I hope you are doing well. All the Best Rimmy

PMRpro profile image
PMRproAmbassador in reply toRimmy

After my husband died I had a massive flare about 6 months later - I'd needed 15mg pred to function while he was ill throughout the Covid lockdowns and it rose to 19mg and still a LOT of pain. I'd been on pred for 13 years by then and failed MTX - couldn't function on it at all and developed pred side effects I'd never had! So Christian my rheumy had seen excellent results in a study in France on resistant PMR so, because he could, he put me on it.

I have got to 7mg and TCZ injectsions now every second week - while still on weekly jabs I tried 6mg but after about 3 weeks I get awful bicep and forearm tendinitis and can't do anything with my hands and have persistent pain. I also find myself very wobbly in adrenal terms - I'm here alone and getting the tax stuff together or the like sends me into a complete funk! At 7mg pred and TCZ every 2 weeks I seem to be fine. I shall experiment to find out how long I can go between injections! The downside is that I would struggle to get it in the UK - and my daughters are quite keen I should return for obvious reasons. One has bought a new house - with the potential for a granny annexe for me. I will get the work done and see how long I can hang onto my medical cover here ...

Rimmy profile image
Rimmy in reply toPMRpro

That is quite a saga PMRpro - I remember when your husband passed and really felt for you - I guess it was almost inevitable the strain would manifest in a terrible flare - I am so sorry that all happened to you. I suppose now it would be a dilemma to move to the UK if you can't access the meds - so I hope you can find a way to do that as it sounds like it would be a great situation there with your family. I haven't investigated as I am not doing too badly here in OZ but last I checked TCZ wasn't available for GCA/PMR - but so pleased it has been helping you !!

PMRpro profile image
PMRproAmbassador in reply toRimmy

It is there in Oz for GCA and Lemonzest has done brilliantly with it to get off pred after another interesting saga to get it extended. If only they'd realise that it has a place for some of us! Good to hear the orchard is thriving!

Rimmy profile image
Rimmy in reply toPMRpro

Oh thanks for that - last I looked - awhile ago now though it wasn't available for GCA. At this point I'm not sure if I'd request it though - so far Pred doesn't seem to have done me much damage but I do have to have my bone density looked at again soon as I haven't for awhile - so if it looks ominous it may become more relevant again then.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRimmy

Nice to see you still around-how’s your garden/smallholding?

Rimmy profile image
Rimmy in reply toDorsetLady

Hi DL how kind of you to ask. We still have our wee orchard - well it doesn't feel so small these days we have continued to plant more and more over the years so usually end up with a decent surplus for sale/trade as well as our own needs. My partner is a decade younger and still very fit - at 72 now I am not so 'quick' any more but do my best ha ha !! Hope you are doing well yourself !

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRimmy

Yes thanks… 😊

SheffieldJane profile image
SheffieldJane in reply toRimmy

Hi Rimmy,

Good to have an update from you. I also have fond memories. Xx

Rimmy profile image
Rimmy in reply toSheffieldJane

Thanks SJ - it has been awhile but I will drop in more to see how you all are - hope things are going as well as they can for you !!!

Sukama profile image
Sukama

Yes, I have been on methotrexate since last autumn. At first, I found the day after etc I was really exhausted but after the first few weeks it settled down. I still find I get tired but not sure whether that's the P MR or the tablets. It has ment that I am no longer on steroids. Blood tests every fortnight then monthly. Now down to every three months. I was worried at first too.

Ozziedays profile image
Ozziedays

Hello, I was advised to take MTX to help me taper off pred. I took it for 2 years and had no noticeable side effects. I got to zero pred after the first year. During this time I moved from Australia back to UK and so had two different sets of GPs & rheumatologists all of whom seemed to be on the same page regarding the use of MTX. The side effects listed on the patient information leaflet are a bit scary, I read it through at the beginning and paid close attention but didn’t experience anything. The regular blood checks when I was taking MTX provided some reassurance. Hope this is of interest and best wishes

coralflux profile image
coralflux

it is the standard treatment for RA and many people take it. As with all these drugs it can be a marvel or a nightmare or anywhere in between. The usual side effects are nausea, fatigue and hair loss. Often your body becomes acclimatised and it will stay as your standard treatment. Many people opt for injecting it because of the nausea. It also takes a long time (3 months) to start working. The pills are tiny and easy to swallow, but there are at least two different brands of MTX and I found one brand significantly nastier in side effects than the other. (Nobody ever talks about this, so may be helpful) My long term aim is to come off all the drugs through diet and exercise.

Smithie49 profile image
Smithie49

Hi bookbear68. I was put on methotrexate (15 mg a week) last Dec as a dexa scan showed osteoporosis in my spine. I was taking 71/2 mg prednisolone for PMR. I too was terrified but it hasn't been too bad. The extreme tiredness, headache and dizziness the day after taking it was countered by folic acid which was increased to 5 mg on 6 days (not the day I take metho). I'm not sure if it is helping with anything though walking is a bit easier - I used to feel like I had a tight restraint around my thigh muscles. This past week I have reduced the pred to 7 mg and will stick at that for a while and see how things go. Good luck.

Saintmalo profile image
Saintmalo

Hi there - have been taking MTX for 8 years and doctors have refused my request to come off it. I can’t get a better answer than “it’s a sparing agent for my Pred !“ Reactions vary considerably - but sometimes there is nothing apart from a good nights sleep! Other nights are very weird! Eg. I produce a little squeaky voice and drunkenly wind my way to bed.! Basically, each time is different but I’m still here and grateful for that as my GCA was quite dramatic. My concerns centre around the weakness - particularly in my legs - that is impacting significantly on my lifestyle - so if you or anyone else has any ideas how to counteract that I (& I’m guessing many others) would be extremely grateful

Siena62 profile image
Siena62

Have any of these rheumatologists ever actually taken Methotrexate, I wonder. Clinically, in terms of serious side effects, MTX may be safer but side effects of nausea, fatigue, repeated infections and hair loss, whilst not clinically significant, have a significant effect on quality of life and are really not trivial as clinicians make them out to be. My rheumatologist has wanted to put me on MTX from two months in but I have always refused as I was tapering well. I have been referred to a different rheumatologist now as we never recovered from a bad start and I lost trust in her when she said, at our last appointment, that she wasn't concerned if I stayed on a low dose of Pred having previously said that even a low dose was harmful. I was actually considering MTX because I wasn't feeling quite as well and my markers had risen quite a lot but since that appointment I have been feeling much better. Why, I don't know.

Doublef profile image
Doublef

remember it is a cancer drug and like chemotherapy a toxic way of killing the problem. I was put on both tablets and injections and never been so ill, I did not eat, was constantly sick and in bed, so twice I have refused to take any more, I down to 12,5 pred, some people don't don't have side effects as bad

PMRpro profile image
PMRproAmbassador in reply toDoublef

It is a cancer drug at VERY different doses. It isn't the toxic effect that is used to combat the PMR symptoms but another one.

Doublef profile image
Doublef in reply toPMRpro

it certainly feels like it, never again. My wife was in bed next to me from chemotherapy feeling exactly the same.

PMRpro profile image
PMRproAmbassador in reply toDoublef

I felt awful on it - but never as bad as my husband was on it for chemo. The one side effect I never had was nausea!

Siena62 profile image
Siena62

And, as I understand it, there is general consensus that there is also a small increased risk of cancer from taking MTX for non-cancer treatment, certainly skin cancer. You are advised to take special precautions in the sun. My rheumatologist denies that there is an increased risk of lung damage.

It really is a question of balancing risks and benefits. If I had Osteoporosis I would probably take it if I couldn't taper down the Pred.

It would help if rheumatologists would prescribe Folic Acid more liberally at the start rather than letting patients suffer with side effects for weeks before increasing the dose from once or twice a week. By then, patients may have given up on MTX. Personally, if I started losing hair I wouldn't give MTX a second chance. I wouldn't risk further hair loss even if the Folic Acid dose was increased.

It's worth pointing out that the dose of MTX starts low and is increased over a number of weeks. Some people don't suffer as much from side effects from the lower doses but studies appear to show that the lower doses aren't very effective without being supported by Pred.

It has to be an individual decision based on your health profile and personal priorities.

Darcy2000 profile image
Darcy2000

I am at 12.5 Pred and Methotrexate was added about 4 weeks ago. If there are side effects they are very subtle . I am on a host of other pills so unless you are really looking for them the side effects are slight and worth the effort of getting off Pred . Of course this is my experience . I generally tolerate med well

PMRpro profile image
PMRproAmbassador in reply toDarcy2000

The side effects MAY be slight - and you MAY get off pred. In that case - win/win. But they can be awful and you may not get off pred. Two sides to every coin ...

Frewen1 profile image
Frewen1

can only say I was on it for a couple of years before I got my year of Tocilizumab ( now on the alternative, Leflunomide, and back to 9mgs Pred ) - I personally didn’t experience anything I could recognise as extra unpleasant alongside all the other symptoms of weakness, fatigue etc…but I understand some people do have a not good time…good luck

PMRpro profile image
PMRproAmbassador in reply toFrewen1

Not sure I'd term leflunomide an "alternative". "Substitute" maybe, and a poor one at that.

Frewen1 profile image
Frewen1 in reply toPMRpro

Yes, that’s more accurate… I meant they used that term when they substituted it. X

Kentish_Man profile image
Kentish_Man

If you read the leaflet included in just about any medication you will end up not taking them.They are obliged to put any possible interaction you might get. But consider that the positive effects of the medication will far outweigh the 'possible' side effects.

I gave up reading these leaflets sometime ago. I suggest, unless you are told otherwise, that you do too.

PMRpro profile image
PMRproAmbassador in reply toKentish_Man

I think that is a bit too far - there are adverse effects that are mentioned that are red flags for immediate medical opinion and sometimes discontinuation. If you haven't looked - you won't know. And you may also waste time asking the GP about something that is not anything to worry about.

GerriMc profile image
GerriMc

I found it very useful. I was stuck at 19.5 of pred for months and couldn’t get any lower. I came off it a couple of years ago , now at 2mgs Pred. Like you, I was scared reading the leaflet, but other than tiredness on the day following the dose and a small amount of hair loss, it was fine. One tip I found useful from a friend is to take it at night then you sleep through a lot of the side effects.

One thing though, if you are managing to reduce your pred without it, I’m not sure you need it. I’m no expert though. Best of luck!

krillemy profile image
krillemy

Hey - I am on 20 mg MTX ones weekly, and I have no side effects. It makes me less stiff and I just fell better. I still need 12.5 mg pred. so no wonder drug, I will try to taper after the summer. It is important to increase very slowly to 20 mg - to avoid ant side effctc lice nausia or fatigue. Give it a try :)

bookbear68 profile image
bookbear68 in reply tokrillemy

I am being started on 15mg for two weeks then 20mg for four weeks with monitoring blood tests every couple of weeks.

krillemy profile image
krillemy in reply tobookbear68

I would ask to start at 5-10 and then up 5 mg every 2 weeks.

bookbear68 profile image
bookbear68 in reply tokrillemy

Good idea thanks

Myfoe profile image
Myfoe

25mg of Methotrexate was added to my battle against PMR when I stalled at 12mg of prednisone but the pills tore my stomach up so we switched to weekly self injections once a week I highly recommend injections over the pills but methotrexate only helped a little I stalled at 10mg so Kevzara was added and it had really started to helpafter a few months I have had a few “normal feeling days” but I had to go through methotrexate to get approved for kevzara best of luck to you Bookbear

bookbear68 profile image
bookbear68 in reply toMyfoe

Thank you for this I am thinking of asking for injections as have had such a lot of stomach reactions to the rest of my drugs.

Janetknit profile image
Janetknit

my history is so close to Myfor’s. I too was switched very early in the game to 25 mgs of methotrexate injection once a week. I have started Kevzara for the last 8 weeks and have actually had some very good feeling days! Best reaction yet in 4 1/2 years of PMR. I am at 6 mgs of pred and will resume very slow taper next month as I am very sensitive to flares. Methotrexate was in my experience a very helpful drug but for me only in the injected form. I will continue methotrexate with Kevzara and pred and hope for best results. Best of luck with your decision.

DrRon profile image
DrRon

Hi Bookbear 68. I will comment with integrity. I am on Pred 5 yrs. Started @20mg, went up to 30, now 4mg/da. Resisted MTX for 2 yrs. after reading 3pgs possible side effects. Hands developed RA. Decided to take MTX for that & to reduce Pred. 4mg gave me a pain-free 2023. Rheumy asked me to reduce. Tried for 8 mo, slow incremental reductions. At 3&2mg alternate days, pain was returning; did 2mg for 5 wks, pain was hard. Decided on my own to go to 4mg. My body is happy there. Rheumy lets me monitor myself. I'll keep trying at my own pace. Your question: MTX gave me hands free of pain. No noticeable side effects. I am 81 yrs old. Driving a top down sportscar. --- Shockingly, my wife Christine was diagnosed with PMR 4 wks ago. She's one 15mg Pred. She's determined to be off of it in 6 mo. So, now our diet consists exclusively of anti-inflammatory foods, no salt, no sugar, no alcohol (boo hoo) etc. But I will drop pounds, reduce my blood pressure. It's all good. We function. With joy for the day. All the best as you make decisions.

PMRCanada profile image
PMRCanada

I have been on MTX for 2.5 years now. I started it because I got stuck at 9mg pred for 2 years. I flared 5 times in those two years each time I attempted to lower my pred dose down to 8.5mg. I take 5mg folic acid every day but injection day.

I was very hesitant to start MTX but can report I’ve only experienced a few side effects. I started at 25mg MTX and was able to lower my pred (slowly), but the first winter I was sick for 5 months on and off with every bug that was circulating. The next spring we lowered my MTX dose to 15 and much better since. Most rheumatologists start at 10 and work up.

I’ve also experienced some hair shedding/thinning, but that’s it for side effects. I did have to stop my weekly injection when on antibiotics. Once I held it for 3 weeks and PMR symptoms returned. Since this past Feb I’ve experienced weakened, tired, and sometimes sore quads which could be pred-induced or some breakthrough PMR symptoms, or pred withdrawal…who knows?

I’ve been able to drop my pred dose 8 times (.5mg increments), and in 2 more weeks I’ll be at 5. I’ve been on pred 6+ years. I’ve had bouts of fatigue, nausea and diarrhea in the last few months, but pretty sure that’s my adrenals starting to kick in again. The plan is to continue to try and taper very slowly (.5mg every 14 weeks as I have to double my 7-week taper at this dose), unless of course I can revert to my 7-week tapering plan along the way.

Of course this is only one MTX experience, mine. You won’t know how you make out unless you try….and you can stop MTX abruptly if need be. I was petrified to start pred but it gave me my life back. All the best with your decision and outcome!

Lillibet27 profile image
Lillibet27

I take my 10th dose tonight, and it’s been a rocky experience. Been told it could take 12 doses before it takes full effect. I vomitted, had diahorrea, constipation and its affected my IBS. I’ve been in so much pain I’ve been in tears. Have been on steroids for just over 2 years and had to start again a while ago. Now on 3mg - cannot reduce anymore at the moment as the pain in the joints on my left side is awful. I really hope for a miracle when I get to the 12th dose. Like you I scared myself when I read about the side effects. I hope it’s worth it for us both 🤞

PMRpro profile image
PMRproAmbassador in reply toLillibet27

Even then, it is not a sure bet that it will help you get off pred. And frankly, any doctor who persuades someone who is at under 5mg pred on their own to start on MTX on the grounds it will do so, needs to question what they are doing adding in such a potentially unpleasant drug which is, in your case, causing worse adverse effects than the low dose of pred.

I know a few top experts in PMR who are horrified at people on low doses being put on MTX,

Lillibet27 profile image
Lillibet27 in reply toPMRpro

I f I wasn’t scared before, I certainly am now. I feel that now I am retired elderly lay, even though I’m told I don’t look it, the medical profession don’t care anymore.

PMRpro profile image
PMRproAmbassador in reply toLillibet27

I don't think you need to be SCARED - but you should be upset at being misled that this is a magic answer to a low dose of pred that actually probably has few adverse effect, they tend to happens above 10mg for most people. The idea is Quality Of Life, and what you describe is not a good QOL. The rheumy isn't living it, you are and if you are in tears - it is time to say no, this isn't working.

lkcreedon profile image
lkcreedon

Hi bookbear68!Sorry for slow response. I have been exhausted this past week. MTX related? unsure!

I was put on methotrexate 4 months ago as a steroid sparing drug, 10mgs once a week.

I was stuck on 10mgs of pred for ages and unable to drop without aches. I resisted at first but then agreed as I'm very anxious to get off steroids or at least drop down to as low as I can go. I have dropped down from 10 mg Pred to 9 mg and now I'm on 8.5mg however. At 8.5mg I'm a bit iffy at times but persevering. I'm going to take it all very slowly in any case as recommended by the forum here.

I too have osteoarthritis so finding it difficult at times to manage my PMR and OA. I have osteopina T score - 2.3. -2.5 is osteoporosis..... scary! Two years ago my T Score was -1.7. Rapid enough deterioration Id say.

Up to my 11th dose of MTX I had no improvement. I had very bad nausea for a few days at that point and as I was going to Italy for a week I skipped a dose. This was OK'd by the Rheumatologist. So to Italy, lovely weather things improve quickly and my PMR went 'to sleep' so to speak. On my return to Ireland I remained well but continued with the methotrexate (dose12). That was a month ago now and recently I have been having some symptoms of PMR again from time to time. Now unsure if it was the good weather helped my symptoms or if the methotrexate kicked in. I'm going to give it a few more weeks to see if it improves again. As for symptoms, well not bad overall. I have some light cramping and loose stools a day or two after I take my dose. Just that one time of bad nausea. I do feel quite exhausted on occasion but it's infrequent. I know when you read those patient information leaflets it can be very scary for sure. The listed symptoms are there to cover the higher dose taken as well so you should bear this in mind when reading them.

For me it's still inconclusive as to wether or not the MTX is actually working fully for me. That is why I will continue for another while on it. Before the MTX I was on Hydroxychloroquine for about 4 months as a steroid sparing drug. Did nothing for me at all. From this site I have learned that MTX can work very well for some but not for for all.

Hope you have some luck with your own efforts.

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