Methotrexate : Hi all Rheumatologist wants to put... - PMRGCAuk

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Methotrexate

Coffeebeans
Coffeebeans

Hi all

Rheumatologist wants to put me on methotrexate becuase I'm struggling to taper - currently on 17mg. I'm reluctant, it's another nasty in my view and the increased monitoring is an additional stress. But getting the pred down is important too especially as I'm developing the chubby cheeks.

I've been very low carb for just over a week now and feel pretty good. Hoping this will make the difference and I would really like to give it another 4 weeks and attempt a drop to 16mg before considering Methotrexate....daft idea or not?

Grateful for any thoughts you have. Thanks all.

73 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Think Rheumy is a bit premature - you haven’t been on Pred that long. I’m afraid chubby cheeks are par for the course for most people, so although you might not like them, it’s not a reason to reduce the dosage. You need what your illness needs.

Stick to your guns and reduce 1mg per month, very sensible - and reject the MTX - if pressed, say you’d rather not at the moment but might consider in future if necessary.

I had the same with Rheumy, but I politely declined and told them I was slowing tapering down to see how it went. I started Dorset Ladys 5 week taper and went down slowly from 20mg, I'm now in 4th week of taper to 17.5mg and feeling pretty good, probably better than I have in a couple of years. Also cut my working week down to 4 days, healthy eating, low carb, low salt. Hopefully, I can carry on the same, slowly does it and let my body tell me when it's the right time to taper again. Personally Methotrexate would be a last resort.

Hi, about chubby cheeks, I don't think I had them so you may say it's easy for me to talk, but my strategy was to find out about every unpleasant side effect, adjust to the possibility that it may happen to me and carry on with humour, so I made fun of it and it lost the power it had over me.

Low carb sounds like a good more, persevere.

PMRpro
PMRproAmbassador

My view is just say no! I think you have to have a go at doing it yourself before trying a drug for which there is only limited evidence of benefit. The one study that did find it appeared to result in a reduction in cumulative dose after a year did a follow-up at 5 years - and established that there was no difference in pred-related adverse effects. Which for me begs the question as to why you would add the risk of a second lot of adverse effects!

We have a lady on the forum at present who has lung problems due to mtx - I know that there are rheumies who think it only happens with the cancer doses. It doesn't, it also happens at low doses. For some people it doesn't cause problems - but over the years I have heard of quite a few people who struggled with it with little apparent benefit.

I'm not saying it doesn't have a role to play - but it is NOT in the first few months which are well known to be the hardest to get the dose down because the disease seems still to be quite active and so needs the pred at that stage. If it weren't active you would be able to reduce relatively easily.

Well I think that confirms it for me. Thanks for the thoughts everyone, I'm going to decline for now and go with the low carb and slower taper.

When I read the letter back again, she mentions using methotrexate long term to prevent recurrence once off pred which I don't understand. Methotrexate doesn't treat PMR so I can only surmise she thinks it is something else.

I have too many questions and no appointments to ask them!

PMRpro
PMRproAmbassador in reply to Coffeebeans

I know of no proof that mtx reduces relapses of PMR - and since the incidence of relapse is really not that high I'm darned if I would take it "just in case". They ask us to take a lot of "just in case" medication and frankly, since polypharmacy is a risk factor, especially in older patients, I think that really needs looking at.

Should add - in over 12 years on all the forums in the UK I have come across maybe a dozen people who have had PMR a second time. Properly a second time with years between episodes - lots who were forced off pred by their doctors when 1 or 2 mg was doing the job nicely and the symptoms were back in a couple of months. Prof Dasgupta has said recently he keeps patients on 2-3mg long term as it avoids relapses and is not a problem. I'd far rather take 3mg, even 5mg, pred than mtx long term if I don't need it for inflammatory arthritis. That is a different matter altogether. But methotrexate "just in case" - no way.

Coffeebeans
Coffeebeans in reply to PMRpro

I agree. Never been one for taking tablets - I like to understand the why's and wherefore's first and what I can do myself before committing.

You get to a point where you take more and more tablets just to manage side effects ....

PMRpro
PMRproAmbassador in reply to Coffeebeans

PS - just added to the comment, you probably won't have seen the new paragraph.

Coffeebeans
Coffeebeans in reply to PMRpro

Seen it thanks. Yes, must he absolutely devastating to have a flare up and be back on 15/20mg after ticking along happily on a few mg's.

More than happy to challenge this latest thinking. I'm sure she thinks I have RA. I have no joint issues or swelling. Pain is all text book PMR locations. Pet scan confirmed too... I know she is trying to help but I don't feel I completely trust her view.

I agree with all the very smart answers you have received so far. I spent my first year with PMR being unable to get below 15mg of Prednisone. My rheumatologist added Methotrexate starting at 20mg once a week. It made me so sick! I struggled with that awful drug and stayed with it for almost a year. Even after tapering to 7.5mg of Methotrexate I was no better than I was when starting on it. I was still having flares and my liver function suffered. It never helped me reduce my Prednisone. My doctor even apologized for ever having prescribed Methotrexate. I’m into third year with PMR and down to 4.5mg of Prednisone because of adding the drug Actemra. Good luck with your journey.

Sounds awful and im sorry you went through that. I will stick to my guns i think!

I was the same as you I Had been on mtx And AA for months then ended up so Ill which I am recovering from slowly I’ve had a endoscopy found hernia, holes in oesophagus And nodule in lung I have the rigours every day on 25 mg prednisone for months now goinG to try me onAnother sparing drug which I am apprehensive to try due to fact I am beginning to feel a little more comfortable with my breathing. My rhuemy consultant was embarrassed at how ill I was I could tell he let his post in hospital now I have a rhuemy nurse lookinG after me alonG with my Own gp what a mess I remixed a letter yesterday about a dexa test appointment Bit late in the day this should hav3 been done way before they put me on mtx I hope I don’t suffer long term with mtx as it’s been a journey to hell and back Sitting here shaking and breathless. 🙏🏽 Hospital appt for details 2 august. 🤞🏼

Coffeebeans
Coffeebeans in reply to Tamtan2

Oh that's absolutely awful, I'm so sorry. I hope you manage to get back to good health soon x

So sorry! Wishing you the best. This journey can be so hard. Most of the time I don’t let it get to me but damn it, some days I just feel mad or sad and give myself the time to go with those feelings. I think burying them all the time can cause more problems than a day here and there to just let the feelings out. Be well!

Hildalew
Hildalew in reply to Tamtan2

Are you still taking the AA?

Tamtan2
Tamtan2 in reply to Hildalew

Hi there. No I stopped that too as I felt awful and got to the stage I was scared of the side effects. Don’t miss taking it. Details rest nex5 month whic( should have been done before they put me on AA.

Hildalew
Hildalew in reply to Tamtan2

Oh good! (that you stopped AA) Let's hope they don't find cause (in the Dexa scan results) to press you to take it again and you don't have to waste energy on having to refuse - assuming that that is what you would prefer to do.

I was offered MTX after being unable to get below 10mg. after 4 years. I researched past posts here and declined it. My brother also had PMR, he took MTX and ended up in hospital twice as a result, as it caused him to black out.

It has helped some as you will find out but we are all different and you must make your own decision. Personally I would say it is too early in your journey to start considering it. I have only managed to reduce another 1mg over the last year, so I will soon be offered it again no doubt. I prepare for battle!

Coffeebeans
Coffeebeans in reply to scats

I have to admit to hearing more negative than positive although I do know colleagues on it for RA and they are ok.

Very scary for your brother. I agree, it's too early for me and I will continue on a v slow taper and diet modification.

Blackcatlover
Blackcatlover in reply to scats

Is there a chance you could try Actemra? It’s the only way I was able to reduce my Prednisone. I do have to admit, part of the reason I was approved for Actemra is because I had tried Methotrexate and it had failed to help me at all.

I have no idea but a quick Google tells me that you should have tried another DMARD first. It must be expensive!

I'm still pretty new to this having had symptoms since October 2019, Pred since Jan with a fast taper in Feb/March. Still early days and I really think they want me off the pred partly because of covid too.

PMRpro
PMRproAmbassador in reply to Coffeebeans

IRO £12K per year.

Getting you off pred in the context of Covid is wrong - it does appear to have a protective effect with dexamethasone being used to manage it.

Coffeebeans
Coffeebeans in reply to PMRpro

That explains it!

Blossom20
Blossom20 in reply to PMRpro

Interesting...is dexamethasone similar to Pred? I'm worried about having no immunity due to Pred and getting ill in the winter.

PMRpro
PMRproAmbassador in reply to Blossom20

It is a longer acting corticosteroid - and much stronger. For example, 40mg pred is the same as 6mg dexamethasone. Tapering would be a nightmare.

Lack of immunity is variable. I - and lots of others - actually have had fewer infections while on pred. All corticosteroids have similar side effects so they use the most convenient. and pred can be taken once a day, easy to remember and helps compliance.

PMRpro
PMRproAmbassador in reply to Blackcatlover

In the UK the guidelines are very strict: for relapsing or difficult to manage GCA only and you must have failed DMARDs as steroid sparers first. Even when approved you only get it for a year. And not available for PMR at all at present.

You can't get in the UK unless you are on one of the trials for it and have GCA as it is so expensive.

So sorry to hear that.

I'll see what my rheumy says, my appointment isn't until October, I'll see how things are by then. I seem to be able to reduce now, if slowly.

I never worried about my chubby face. I called it my Prednisone facelift. The lines around my mouth that I always called puppet mouth totally disappeared. My face was very smooth! 😏

Lol same as me lines gone as I am a thin person but my grandchildren don5 like my face bless them.🤗🙏🏽

Thelmarina
Thelmarina in reply to Tamtan2

I have a collection of fun earrings- legomen, ice creams, muffins, eggs on toast, you name it. The grandchildren so enjoy spotting them that they don’t bother with the rest of my face! 😅

Look at Mrs Nails’ post for the other side of the Methotrexate argument. You might be lucky too. If not you can come straight off it, without tapering. I share your reluctance to take more heavy meds but after 4 years ( PMR then GCA), Pred has taken its toll and I have collected side effects such as steroid induced diabetes and I really want to come off it. I am taking Tocilizumab in the hope that I can achieve this.

Thanks for the balance, I will check it out.

I wish we could see the future- it would make the decisions so much easier in terms of these drugs!

I hadn’t realised that you haven’t had PMR for very long, as other posters have pointed out. I think that is another argument against resorting to another heavy duty drug. My Rheumatologist was pretty keen on Methotrexate latterly and did say “ ask any Rheumatologist, they would much rather be on Methotrexate than Prednisalone”. I have to admit, that did give me pause for thought.

Jane my lovely Dr Lim always said the same, she’d rather take MTX than Pred......

Interesting?

How’s the TCZ going? Or should l say say how are you? x

I have been prescribed Metformin and now the slow release version ( fewer side effects). This is a pity because I would have liked to concentrate on Tocilizumab and it’s effects alone. I administered my second injection yesterday. I was fine all day - slightly more energy. Out of sorts in the evening with significant stomach pain. I couldn’t remember which drug we weren’t supposed to take over the counter indigestion remedies with and couldn’t find guidance on-line. Eventually I took Gaviscon and this soothed the pain. Can’t help wondering if these pains indicate damage being done. My husband is a great cheerleader for Tocilizumab ( fed up) and this helps. Down to 15 mgs of Pred from 40 mg already - so feel that kind of rough too.

Thanks for asking! Sorry for chapter and verse. Xx

Sounds like you need a look after yourself day today! X

It’s the lack of a crystal ball that you mentioned that causes the anxiety. Good luck!

Hi I’m think I’m going to be put on tocilizumab Soon as I’ve been on mtx AA which made me so ill (noT the same for everyone) Been on prednisone for Pmr 7 1/2 mg then Gca diagnosed March on 25 Mg at present January February on 60 mg Which are causing some not very nice side effects Love to get off preds but if my body needs them then so be it but would love to do it without soarers.🙏🏽

Good luck! I administered my second injection today ( Tocilizumab).

I was persauded to try Azathiprine and then when that didn't work MTX, all because I couldn't get below 5 Pred. I can't remember which was which now but one gave me breathing problems and the other I totally lost my appetite so both were stopped abruptly when I reported the side effects. I really didn't feel comfortable taking something that could harm my liver and other things - I was suspicious of any drug that needed such close monitoring too. I've been on Pred for 7 out of the 8 years I've had PMR and am now in a worse state than ever in terms of the steroid dose needed - if I ever get down to 5 or even 10 again I will stick there and not try and rock the boat. But I don't have any other side efects, no osteoporosis and heart problems. Blood sugar did creep up but with low carb eating it's now back well in the normal range (was 51 in Jan now 41) I agree with all the comments you have been given, it really is early days for you and there's no need to change the plan at this stage. Hopefully you will have a 'normal' straightforward PMR journey so see where you are in a few years if it hasn't already gone by then.

PMRpro
PMRproAmbassador in reply to tangocharlie

I was only on it a month but I haven't felt as well since trying the mtx and need more pred!

tangocharlie
tangocharlie in reply to PMRpro

I have no idea why I still need so much Pred after all these years. Things were going so well on the injections until I was forced to reduce the dose, I knew no good would come of it. From my post on long-timers and the replies I got, there are some correlations with us long-timers: usually younger when we got it (generally 50s) and longer to diagnose and also probably under-treated in the early days, and for many frozen shoulders and bursitis type things before PMR. Of course correlation does no imply causation as the maths teachers drummed into us at school, but it warrants further research

That's what bother me too, I'm 46 and fully believe that had I been able to stay on the initial dose of 15mg and taper from there it would have been smoother. Ive never felt like i have the flare under as good control from the fast taper back in Feb.

So frustrating!

That's probably another reason the rheumy is trying to steer you towards MTX, at your age they probably doubt you have PMR and think it is something else more on the arthritis spectrum, for which MTX is standard treatment.

What was the fast taper they made you do?

PMRpro
PMRproAmbassador in reply to Coffeebeans

I tapered quite quickly in March to have a PET-CT but I don't think it found anything - haven't seen the rheumy because of Covid. And since that I'm probably worse.

No fear

Hi there,

I have PMR and my daughter has RA.

I have found the best method is drop 1/2 a tablet every 4 weeks

When l tried to do it faster it was to painful.

Even though doctors try and drop you quite significantly every time

That just didn’t work for me or my mum who also has PMR.

Patient is definitely a virtue with pred!

Bev

Hi Coffeebeans

I didn’t see your post until after l’d posted my update yesterday. I’ll attach a couple of my Posts for you to read, more from the other side of the coin, there are a lot of people on here who take MTX

My advice is read up, listen to what people who have taken it, have to say......

It’s not an easy drug but it is extremely well monitored, mine was stopped immediately when my blood markers rose & believe me l have suffered more in the past two years than l ever want to again but l’m now six weeks back at my previous dose of 20mg MTX weekly & it is making a difference 🙏🏼

healthunlocked.com/pmrgcauk...

Thanks Mrs Nails. I did read your post this morning and it has given me food for thought. I don't suppose there's any hurry and I can make up my mind in time. I'm very torn.

I have booked in at the GP for the initial blood tests in 10 days though as I haven't had bloods drawn since March.

Fingers crossed your journey gets easier now and continues to be positive!

Hi Coffeebeans, my rheumatologist has been trying to get me to take it too, I've declined because of the side effects, the main ones I am worried about are hair loss, headaches, digestive problems, and breathing problems. I already have headaches, ibs, ulcerative colitis and asthma so I don't think it's a good idea, also my hair has just started growing back after thinning from the pred . I'm on 11mg at the moment,due to go down 1 mg tomorrow for six weeks. Regarding the chubby cheeks, I got them and hated them but they do go, mine started going when I got down to about 13 mg, they are almost back to normal now.

Coffeebeans
Coffeebeans in reply to Poppylop

I can see why you are reluctant given the existing conditions but you seem to be reducing ok?

I'm certainly not discounting it, it just seems a little.early and I'm wanting to see the effect of low carb first too. I would prefer to alter my diet rather than take additional medication.

I wl/look forawrd to the cheeks going if I ever manage to get near to 13mg!

The decisions we are asked to make!

I, like many in this group, am reluctant to take other drugs. Many of us were were well and active before PMR struck and were not taking any medication into our 70s. Being asked/advised to take anything now that might cause horrible side effects is anathema to us.

I developed sixth nerve palsy around Christmas 2019 when Pred was increased to 15mg and have been on 5mg since lockdown. I have refused Alendronic Acid because my Dexa Scan was not too bad - thank you PMRpro and others for your advice - but know that my forthcoming telephone consultation will include Leflunomide which I don't want to take.

As others have said, go with your gut feelings. Your idea is by no means daft.

Good luck.

Coffeebeans
Coffeebeans in reply to 123-go

Thankyou.

I'm 46 and 18 months ago was running half marathons and doing 10 mile tough mudders for fun. I've not accepted this new found disablement very well i have to say. Probably not helping..

You're right, the decisions are difficult and it's hard to know what to do for the best.

PMRpro
PMRproAmbassador in reply to Coffeebeans

You may well get back to it - he did:

healthunlocked.com/user/Ski...

Wow! You're so young! It's not ****** fair! You will be receiving a number of very helpful replies in your inbox. There are lots of very experienced and knowledgable people in the group.

I wouldn’t try Methotrexate when you are on 17 mgs of pred as you have done well and could taper slowly. I have GCA and was having flares when tapering steroid from 30 mgs to 25 mgs. I am on Methotrexate and have close monitoring every two weeks. I had been on 10 mgs weekly but due to my liver enzymes spiking after a few weeks, my rheumatologist has reduced my dose of Methotrexate to 7.5 mgs. I am concerned about damage to my liver. However, they are monitoring it closely.

It has helped me to taper my dose by 5 mgs weekly and I am now on 10 mgs of pred. I will be tapering 1 mg a month from August.

I wish I had suggested to my rheumatologist a slower taper when I was having flares.

You have been given some great advice by those who are more experienced than me in PMR matters.

I hope things go well for you. Keep us updated.

Coffeebeans
Coffeebeans in reply to Skysey

Thankyou for your experience and advice. Very useful to someone new at it 🙂

I was in that exact position. I was on 17.5 mgs of Pred but couldn’t even get down to 17. I did everything possible to reduce but months later I was still stuck. My Rheumy advised MTX but I resisted that as I’d read all the reports. Eventually I tried it on the basis that I could stop if it didn’t agree with me. I worked almost immediately. After about 2 weeks I was down to 16 and kept going. The only side-effects I had are some extra tiredness after taking it which I managed to offset by taking it at night, you sleep through the worst of it. Some extra hair loss but that settled down after a bit too. I’ve had the odd flare but it’s been mainly ok. I’m down to 1 and a half Pred now and reducing MTX. Yes, you need blood tests every 3 months but it’s not really any hassle and you can stop immediately if there is a problem.

My tuppence worth would be, if you’re really struggling to reduce the pred, it may be worth trying MTX. It worked for me.

Coffeebeans
Coffeebeans in reply to GerriMc

That's really interesting and has made it harder to decide I think 😂.

I think my plan is to carry on low carb and at the same time ask for enteric pred consistently and see where I am in 2 months. If still struggling then I will give it a shot.

GerriMc
GerriMc in reply to Coffeebeans

Yes, do what is best for you. We are all different. I’m lucky to have a good rheumy who listens and explains everything. You’re not that far into it, I was struggling for ages and also had some temporal pain. Hope you start to feel better soon. And good luck with the diet. I’ve lost 25 lbs. I’m vegetarian so low carb is more difficult but I try to stay away from sugar. That helps! Keep well! X

Austin7
Austin7 in reply to GerriMc

My wife ( GCA) has been on mtx since a three week spell In hospital a year ago ( LRI) due to the side effects of pred. It was initiated by a passing rheumatologist briefly visiting the recovery ward and the only time we have ever had advice from a rheumatologist at all. All advice since then has been this forum so as she is now happily down to 3mg pred via DSNS but still on 20mg MTX when and how does she come off MTX. Needless to say our Doctor has nothing to do with us as the health centre ( Latham house) has a policy of not dealing with MTX or it seems GCA either apart from initial diagnosis thankfully.

PMRpro
PMRproAmbassador in reply to Austin7

I think most doctors leave patients on mtx for some time after they get off pred and then reduce the dose of the mtx slowly to see how they get on.

GerriMc
GerriMc in reply to PMRpro

Yes, that was the plan but I suggested reducing it a bit and he’s ok with it. I’d prefer to be on a small dose of Pred and be off MTX.

PMRpro
PMRproAmbassador in reply to GerriMc

I've never come across anyone it worked that fast for before. Really interesting.

GerriMc
GerriMc in reply to PMRpro

I suppose I’ll never know whether the improvement would have happened anyway but I may be just one of those people that it suited at that time.

GerriMc
GerriMc in reply to PMRpro

Sorry, sorry, sorry! I’ve just looked at my post above again. I meant to say I was down to 16 after two months (not weeks). Yes two weeks would be miraculous. 😳

I have PMR for 3 years now. Had 2 flares when going lower than 7 mg. My rheumi insisted on adding MTX more than a year ago. In my experience it did not help me at all, but I also had practically no side effects. I am now on 5mg pred for 2 month already after a flare. Thinking of getting off MTX (now on 7.5).

But my friend who had PMR as well had many side effects on pred and decided to try MTX. She thinks that it helped her a lot. She is off pred for a year now and is reducing MTX.

So in my opinion it is very individual.

Hi, I took Mtx and came off after 3months. I had been on prednisone for 9 months and started at 60. Struggling to reduce. But, didn't feel any benefits of Mtx and my hair started to fall out. My hair is still dreadfully and wearing a wig now.

I find sticking to low carb, no sugar diet helps make me feel good about myself. Moon face is par for the course with Pred sadly. Avoid Mtx if u can and taper v v v slowly. Take Dorset ladies advice.

Good luck, you will do it!

I was diagnosed with GCA and PMR 4 years ago , i was put onto 65 mg prednisalone , then within a week to 62.5 ( that was my weight in kg ) also on Methotrexate 20 mg ... (Sundays and folic acid 5 mg on Tuesdays and Thursdays ) i have had no side effects at all and found tapering easy until I hit 7 mg prednisalone , I then I was tapering by half mg every 4 or 5 weeks . Am down to 1 mg now , happy to stay on that at least for the duration of our victorian (Australian ) winter .I also have Rhumatoid arthritis so I think I will be on methotrexate all of my life now if I continue to have no reaction , i still have regular blood tests . Just letting you know all this because not everyones experience on this drug is negative , blessings and love from Australia . 🌹🌹🌹

Tamtan2
Tamtan2 in reply to Islandgirl50

I think you are right a very individual thing mtx I have been very Ill for 4 months now after stopping mtx I keep taking it thinking I should try to cope and give it a chance sorry I did now breathing difficulties hernia cataracts nodule on lungs and the list goes on. I was a healthy 69 year old before mtx I’ve walk the Great Wall of China could keep up with my grandsons at anything but as long as it’s helping you good luck.🙏🏽

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