PMRGCAuk
7,232 members11,764 posts

Methotrexate or leflunomide

Hello all in now at the end of my tether :( after being diagnosed with GCA/PMR in 2013 and forever on high doses as I start to reduce I get a flare and go back up again..

Currently reducing from last flare and down to 14mg (reducing 1mg per month) ... saw my consultant 2 weeks ago and he's trying go get me on Methotrexate or Leflunomide (He has been nagging me for last 2 years) but too scared to try either ... on last appointment as a parting shot as I was leaving he turned round and said .. oh by the way your hair can fall out or they could kill you... left in tears .. what the hell am I going up to do ??? ;(

92 Replies
oldestnewest

Can offer no advice but am sending you big Angel hugs x

Reply

Thank you Rosbud, it's such a worry I just don't know what to do :( x

Reply

If a doctor spoke to me like that it would be the last time he did it. Counselling a patient to add such medications should be done with empathy. And if you are going to tell a patient that the drug you want to use on them "can kill you" - you sure as h*££ don't do it like that.

Where are you?

4 likes
Reply

Hi and thank you for reply, I am still so upset and confused over this, I live near Llantisant South Wales and the rheumatologist I see is supposed to be the top one in the area, there are only 2 I think and the other one is far less qualified... he's sending me to a monitoring clinic tomorrow but I really don't know why ? I really don't know what to do, just sitting here in tears ;(

Reply

Being "top" seems to have gone to his head - he's still unempathetic. Oh dear - I have a friend who used to live in LLantrisant and her experiences with rheumies and other doctors in the area for PMR were horrendous.

The monitoring clinic will be to have various blood tests done to see if you CAN be put on methotrexate or leflunomide as there are some contraindications. You will probably be counselled about the drugs - so why he had to throw in that stupid comment beats me. You will be closely monitored for the first few months whichever and then at regular intervals after.

Leflunomide did perform very well in a small trial done some years ago - 22 out of 23 patients either went into remission or got to a far lower dose of pred. One dropped out because she couldn't stand the side effects - and there do seem to have been quite a few patients who struggled a bit. On the other hand, Dr Rod Hughes says that it is the only "steroid-sparer" he thinks is worth trying.

Methotrexate does help some people - but as I understand it, it is only really successful in GCA if it is started in the first month. That's according to Baskhar Dasgupta, one of the top UK GCA specialists. Many people take mtx for RA and are very happy on it. I know a couple of people with PMR who swear by it keeping their pred dose down.

If they don't cause side effects for you I think they are probably worth trying. You can stop either of them from one day to the next, unlike pred.

I was offered them both a few weeks ago - I declined as I am on a fairly low dose of pred and I suspect at present it is adrenal function that is the limiting factor, not the PMR. I am also on a lot of other stuff and everything is good at present - I really don't want to upset the apple cart!

However - I'm sure someone in the Cardiff area said recently how good they found their rheumy - wonder if it is the other guy? Or was yours just having a bad day... And qualifications aren't ALWAYS an indication of a good doctor.

5 likes
Reply

Thanks again PMRpro, I'm not looking forward to tomorrow as I really don't want to take It, is there not anything safer? as it seems it doesn't do a lot as a steroid sparer? I am just so confused and scared by all this

1 like
Reply

These are the ones that are most likely to work - and actually, they aren't "not safe" when used properly and the patient is well monitored. Many many patients take them perfectly happily.

You have to bear in mind that there are risks with almost all medications - but you balance the risks and potential benefits. If one or the other doesn't help you can feel vindicated in having been so reluctant to try them. But it may be that you do really well on them and get to a much lower dose of pred. Or, and what is probably more likely and does happen more often, you won't flare in the same way.

Have you always flared at the same sort of dose?

2 likes
Reply

Seems under 15mg I either have PMR symptoms or my CRP starts rising, scalp is a little tender at the moment but I have never had headaches at all with GCA, the flare this time was my hands and wrists, both started swelling so was put on 20 for 1 week then 15 for 2 weeks now reducing by 1mg pm at 14 at the moment

Reply

if you have a tender scalp that is a sign there is something going on. Headache is - contrary to general opinion - NOT an essential part of GCA. A different artery is involved to cause the scalp symptoms.

4 likes
Reply

Well I didn't know that, as they havn't done any tests, I'm wondering if there is something else going on

Reply

It is now being accepted that the symptoms of PMR, LVV (large vessel vasculitis affecting other parts of the body) and GCA (mainly in head arteries) overlap. This paper discusses it:

academic.oup.com/rheumatolo...

The figure showing the overlap is quite instructive.

1 like
Reply

Thank you will have a good read when I get back from hospital

Reply

Saving it so I can digest it fully. Thanks, Eileen.

Reply

Hi , I’m sorry you’re having such trouble. I was put on Methotrexate as I couldn’t get down past 15 mgs. I too was very worried about side effects but decided to try it as I was carefully monitored and if any problems occurred I could just stop taking it. It’s actually helped a lot . I’m now down to 7.5 pred and the only side effect of MTX was a little more hair loss than normal. I still have lots and no bald patches. I also take it last thing at night so I sleep through the tiredness that it causes for a few hours after taking it. I think it could be worth trying, you can always stop if it doesn’t agree with you. Your rheumatologist sounds like he needs a lesson in manners. I hope you get some help. X

1 like
Reply

Cannot offer any advice as I am going through the same and I feel the same. Just believe that we can get through this.

Reply

Hi, I was really surprised when I read your post as it is almost identical to my situation! I can't get below 14 mg of Pred before pain etc. I am due to start Methotrexate on Friday and have to go to the hospital for it and also blood tests etc! I have been fighting it for a long time, mainly because of the side effects and not wanting yet another drug in my body, but I do realise the damage long term that the steroids can cause. My rheumy said that in the short term I may struggle for a while, but he is convinced that in ten years time I will be so glad that I was able to reduce the steroids. At 68, I don't want to risk any long term damage by steroids. I talked to my GP about it and he assured me that if at any time I wanted to stop, I could and he would support my decision. Maybe we can support each other on this mad journey? Don't get too upset about it all, that won't help your health. Try and think of it as a possible helper. I can already see what steroids are doing re teeth, nails etc and obviously at my age my bones won't be liking it much. We can do this! At least we can give it a jolly good try.

7 likes
Reply

What a lovely reply thank you :) I'm 64 and after my last Dexa scan it seems I have Osteopenia in my spine :( apart from that not too bad side effects from pred, the thought of feeling sick, being sick, hair falling out ( went through that a few years ago and couldn't face it again)

Still very mixed up but will def be happy to share this journey :) I will know more tomorrow when I go to this monitoring clinic I don't have to commit myself then but perhaps some of my questions will be answered...will update then, hope all goes well for Friday and we will see where we go x

3 likes
Reply

Looks like you're the leader then! I know what you mean about the hair, lost a lot of mine from cancer treatment and it is a bit on the sparse side to say the least. My kids say I'm going to have a female comb-over soon!

I will look forward to hearing how it goes on Monday and what decision you make. Just remember that at the end of the day it's your body and your decision what to do next. What time is your appointment?

2 likes
Reply

9.30am so I doubt if I will get much sleep tonight, I won't be walking away with a prescription at this stage I need to think this through before I make any rash decisions or be pressed into something I may regret...will update you tomorrow

Reply

Hi Content1

I was in a similar position to you last year. My consultant kept pressuring me to go on mx and eventually I did. Been on it a year now with no probs apart from my red cell count going up which I’ve got to discuss with him next month. It has made me feel better pain wise and they do monitor your bloods regularly I’m down to 5mg pred which is lowest I’ve ever been able to get to. I am also taking a supplement called MSM which I think has helped greatly. Good luck

2 likes
Reply

Thank you for replying, any positive posts are going to help with my decision I seem to be getting better information here than off the Consultant and monitoring nurse I saw this morning

1 like
Reply

It’s nice to chat to people in the same position.

2 likes
Reply

Yes totally agree as I don't know anyone who has it and there are no support groups in South Wales sadly

Reply

My mother had it and my cousin has it as well. On opposite sides of the family. I don’t stand a chance! Lol. Hope you can make a decision. I resisted it for a year before I gave in.

Reply

My late brother developed RA late in life but no one in the family suffered from GCA or PMR so no idea how I managed to get it... if I havn't got it you can bet I will lol

1 like
Reply

Thank you Sue, very helpful reply. Can you tell me what MSM is please and do you get it from the doctor? Thanks

Reply

MSM is a supplement (a bit like glucosamine and chondroitin and it is sometimes combined with them) which chemists and H&B sell.

webmd.com/vitamins-and-supp...

It is felt to have some effect on joint pain in OA - but there isn't much scientific evidence and PMR doesn't affect joints.

Reply

Thank you :) I really don't get a lot of joint pain more aches than anything unless it's a flare of course, only had the hand problem the once so far but happy to check anything out that could help

Reply

Just to let you know, I have been on Pred. since 2012 and only just managing to get below 10mgs. I have tried both Methotrexate and Leflunomide. The former made most of my hair come out and made it go curly (which I like!) and didn't help the PMR at all. The latter made my blood pressure shoot up and didn't help at all either. There is very little evidence around these drugs for PMR and they are very strong drugs themselves. It seems that Pred. may not be as bad as these doctors are thinking anyway- they don't seem to be keeping up with new research.

I have been the subject of scaremongering from Rheumy's. When I listened to them I had flare after flare and ended up taking more Pred. than I would have otherwise. Now I know better......

6 likes
Reply

Thank you for your input suzy1959 it's nice to see both side before such a big decision is made

1 like
Reply

Where's that report that was posted...says pred is not as harmful as once thought...I read it on here...

2 likes
Reply

I would like to see that too, i must have missed it

Reply
2 likes
Reply

Thank you :)

Reply

Hi daworm,

The report is about low dose pred for PMR, not high dose for GCA.

The cumulative dose makes a big difference.

Reply

Personally I think the fuss made about cumulative dose is also over-egged! I have a cumulative dose of over 20g, absolutely nothing untoward to be identified.

1 like
Reply

I have developed cataracts which I'm not looking forward to having removed :(

Reply

I'd swop! No sign of cataracts for me - I wish...

Reply

Oh dear GCA'?

Reply

Me? No, PMR, been on pred for over 8 years - no sign of cataracts. If I had cataracts i would be able to get rid of my specs!!! A dream come true ;-) I have dry eyes due to the PMR - so contacts are a no-go :-(

Reply

Lol ... I'm not sure if my nerves would stand someone galloping towards me with a scalpel in their hand.. especially if I'm awake... wonder if they can do it under General?? Would rather keep to my glasses lol

Reply

suszannah. The cataracts op is quick, painless and marvellous. Local anaesthestic given.You won't even see the surgeon, as he works from behind your head. My dr even provided a nurse to hold my hand throughout, and to ensure you stay still. 20 mins and done. Everything looks wonderful when you're healed. Just remember to do exactly as they say, and take the drops! I wear specs for close-up, but not distance.

It can be done under General, but getting a bed is another matter.You'll be just fine.

Best wishes.

Reply

Many thanks karools, I've put it off twice already and I have to book in by May or be referred again... I'm such a baby lol

Reply

I have been taking methotrexate 12 months, now down alternating days 2 and 1 mg pred after 5years of pmr. No side effects but now it looks like I have Carple tunnel syndrome in both hands, waiting appointment for tests

1 like
Reply

Thank you for reply Zampalion, I have GCA and PMR I'm hoping I can stay with pred a little longer and see what happens if and when I get back to 12mg after flare, just hope they don't put too much pressure on me tomorrow :( sorry to hear about the Carpal Tunnel problem which meds will they use for that?

Reply

Thanks for your reply it seems that soon as get of one medication, another problem services Waiting for an hospital appointment to confirm carpal syndrome, if diagnosis is correct, but with current NHS crisis could be a long wait if confirmed a steroid injection is thenext step

1 like
Reply

I had a steroid injection into my shoulder last week, had it done at GP's made a huge difference... fell down stairs again in November ...... good luck hope it's not too long to get sorted :)

1 like
Reply

H Suszannah,

I don't have PMR/ GCA but do have a version of Ankylosing Spondylitis which presented with PMR/GCA like features including a thoracic aortic aneurysm.

I take Methotrexate 20mg injections every week as well as biologic Infusions ( Infliximab ) every 6 weeks.

I haven't had any side effects from the Methotrexate apart from a little hair loss which is only evident to me. Both MTX and Leflunomide can be stopped without any tapering and there is a medication that can " wash out " Leflunomide if the side effects are too much.

I wonder if the Rheumatologist has investigated why you can't taper below a certain amount, have you been checked for large vessel involvement in your aorta and the vessels off it?

I think a distinction needs to be made between relatively low dose prednisolone ( to treat PMR ) and the high doses needed to treat refractory GCA. There is no doubt that long term, high dose prednisolone comes with side effects. That risk obviously needs to be assessed alongside the risk that untreated GCA poses. The way we each assess the risk V benefit is very personal, but having all the available information is important. The attitude of your Rheumy obviously isn't helplful!

2 likes
Reply

Hello Keyes and thank You, no we just don't like each other lol and i think that reflects in his attitude, plus I refused Alendronic Acid and have been refusing MTX for over a year I think he is losing patience with me.. he hasn't done any other tests apart from Dexa, I don't have many symptoms of GCA it was I briefly lost the sight in my left eye which lasted about 10 mins so ended up in hospital for 5 days... they didn't do any tests as such then (2013) apart from bloods which were all elevated, I will mention these points tomorrow when I attend this clinic appointment

2 likes
Reply

I was diagnosed with PMR and GCA in July 2015 and each year following I have had a flare which I endured for 2 months each time because I didn't want to increase my dose of Prednisolone. I have not been able to get below 12mg of Prednisolone without all of the symptoms returning and making life miserable. I have regularly been offered both Leflunomide and Metotrexate, eventually starting on 10 mg of the latter in October last year. Initially I took MTX in tablet form for the first 6 weeks with no side effects whatsoever. Because I did not want to subject my gut to any more medication I opted for weekly injections, which I do myself using an Epipen. It takes a couple of minutes and is not at all uncomfortable, Folic Acid was added to my medication as this does help with any potential side effects. I am now down to 9.5mg of Prednisolone with the aim to reduce by half a mg a month and, most of the time, I feel fine. Like you I really did not want to take MTX at all having read up about it and my first choice of steroid sparing medication would be Tocilizumab, but because it is so expensive it is never offered until you have tried and failed with everything else. That said, with the recent decision by NICE it is highly unlikely that it will now be offered at all. As PmrPro said, if MTX doesn't work for you, you can stop taking it straight away without any withdrawal symptoms. I would just mention that it does take 6 to 12 weeks before you feel any benefit. We are all stuck between a rock and a hard place as there isn't a cure or medication that we can take for PMR and GCA, so we are given second hand alternatives. It is not great, but take heart that we can support each other through this challenging journey. Hope this helps and I wish you well.

8 likes
Reply

Thank you LizMitchell your input is valuable in helping me with this decision, ehen you say it takes between 6 and 12 weeks to feel any benefit is that in lower CRP? or just in general health? What is the usual starting dose and roughly what side would I be aiming for and over what period of time..so many questions sorry

Reply

Thank you Liz, that is so helpful and informative.

Reply

When I agreed with my rheumotologIst to try MTX a dosage of 15mg was suggested, but I opted for the lower dosage of 10mg as a starting point. MTX does not work straight away, but takes 6 to 12 weeks to take effect. It has enabled me to reduce my dosage of Prednisolone from 12mg to 9.5mg, so it does appear to be helping. It is my understanding that anything below 17.5mg is considered to be a low dose for MTX. We are all individuals and we react in different ways to medication. At this point in time MTX appears to be helping me reduce my dosage of Prednisolone, but only time will tell.

2 likes
Reply

Will address some of these questions tomorrow and see where I go from there.. watch this space lol

Reply

Sounds like your consultant went to the same school of tact as my registrar. When he suggested methatroxate to me and I looked ascance, his words were, "we wouldn't recommend methotrexate if we thought it was bad. Anything is better than steroids. They rot your bones". Lovely turn of phrase. Anyway I've taken it upon myself to try the dead slow method and so far it's working. Good luck.

1 like
Reply

Yes some consultants have no bedside manner at all especially with such a toxic medication..

Thanks on way to hospital now :(

Reply

Except he is wrong. The best thing about pred is the 60 years of use so there are no real surprises in store. MTX has been in use for nearly 30 years in rheumatoid arthritis at similar doses to what they use in PMR - they know a lot about it.

My primary objection about them using MTX is that even though a study by Salvarini in Italy showed that patients COULD get to a lower dose of pred, at 5 year follow-up they found no evidence of any difference in steroid side effects in their PMR patients. This has been backed by this study

medpagetoday.com/rheumatolo...

which found that the perceived "pred side effects" also occur in an age-matched population not on pred. Most of them would happen anyway sooner or later.

I do feel that perhaps it is worth trying for the patient who is stuck in the teens and who tolerates it well, but once you are below 10mg its potential value reduces and that also applies if you are losing a day or more a week with "mtx flu". It is a different matter in RA - there it prevents the deterioration of the joints because it is a DMARD, a disease-modifying anti-rheumatic drug. There is no comparable joint damage in PMR.

2 likes
Reply

Confused again now lol..so I'm best not taking It?

Reply

I am alarmed and appalled at his remark! How cruel and insensitive! I would find a new doctor... Do what your heart, head and experience tell you is right for you! ❤️

1 like
Reply

Yes, I'm worried enough without that ... been in pieces all weekend :(

Reply

What an awful thing to say to you- if he wants you to make an informed decision then that certainly wasn't the way to achieve it. Sounds like he was having an off day and took it out on you- something you can do without and I think I would be thinking of another Rheumy. You will have been for your consultation now but I would just say that I developed GCA after having PMR For one year. For a year I was unable to get below 19/20 mg. At this point my Consultant suggested taking Leflounomide. Like you I was very concerned about taking another drug. I would just say that I have been on Leflounomide for about 9 months I think. I have not had any side effects and am slowly reducing 1 mg per month as per Consultant's instructions. I had to take Leflounomide for 3 months with steroids with no reductions to allow the Leflounomide to settle in. I am now on mostly 16 mg at the present time. I know it does look scary when you read about these two steroid sparers but you can stop them at any time. Let us know how you get on.

1 like
Reply

Well that appointment didn't go too well, a very terse nurse answered a few of my questions but did state it was only a 10 minute appointment, she did say they have a lot if patients on both drugs with no problem, I did mention the remark from the Consultant, she just looked but said nothing... as I wasn't going to commit until I know more she is making an appointment for 3 weeks time, my ESR was 34, CRP 3 plus I have the rheumatoid factor raised I did ask her what that meant but she wasn't very helpful so just as confused as before :( can't remember if starting dose was 10mg or 15mg but it would be 6 tablets once a week then 2 weeks later another 2 tablets and I think that was It, I was overwhelmed and just couldn't remember by the time I got out .... she just said to read the leaflets and decide by next appointment, she just made me feel I was wasting her time :(

Reply

A raised Rheumatoid factor may fit in with the swelling in your hands which can be a feature of Rheumatoid Arthritis.

Do you have a good GP that you can talk things over with? If you do have RA as well then that changes the treatment somewhat. Your Rheumy team sounds awful!

1 like
Reply

Yes not impressed with their attitudes but have no choice... the Consultant and Nurse have seen my blood results from last week, they havn' t asked for me to repeat them for next appointment, I don't see consultant for 3 months.. Will try and get GP appointment that should be fun lol

1 like
Reply

They can’t expect you to start MTX without monthly blood tests. You must be monitored to check your white cell count.

Reply

I am appalled - I know the NHS is in trouble but there is no cause for them to dismiss a patient's understandable fears of something they know little about in such an offhand manner. And you would think they would offer a double appointment for the first attendance because there are bound to be questions.

Rheumatoid factor isn't very informative on its own - it can be raised in healthy people and low/normal in patients with seronegative RA. If it is high/significantly raised it does, as Keyes says, suggest that, if you haven't already got a degree of RA you may develop it in the future.

If you have any symptoms that are more in line with RA than with PMR - and swollen joints is one, it may be that while you had GCA originally, causing the loss of vision, you have now developed an arthritis of some sort. In which case mtx will probably help - though it may be up to 6 months before you can tell. There is no definitive test for either in the very early stages so it isn't entirely their fault for not having a certain answer for you.

Whatever the patient relationship between you and your rheumy team (and it is dire), there is something to be said for agreeing to try mtx - in the short term at least. They seem to feel threatened by your refusal to "do as I say" - if you try it and it works, you can be grateful. If you try it and it causes problems or doesn't work, you can feel you hold the moral high ground. And stop.

1 like
Reply

Some very good points raised there PRMpro and taking them on board.. sadly I'm not in a position to change rheumy, I only had the hand swelling on the one occasion which increasing the pred to 20mg sorted out in 24/36 hours

Reply

Agree with Keyes.

1 like
Reply

What a rubbish consultant susannah!

My Rheumy put me on Methotrexate last summer and I've had no problems bar a mild degree of nausea which goes away quite quickly especially when you take the folic acid tabs that go with the MTX. It works for me up to a point, and is certainly worth a try. After all you can always stop! and one dose wont kill you!!!

1 like
Reply

Good point, it was what the rheumy said at last consultation that caused me all these worries :(

Reply

Prednisone broke off my hair, changed texture and done fell out. Had to get a very short cut but looks ok now. I’m on Actemra and if you are able to get it you should try. Im having way more problems from prednisone. Down to 6 mgs but also got thrush from it and still dealing with the thrush. Got all these side effects before Actemra.

Reply

It isn't available in the UK - has been turned down but would only be available after all other normal measures had failed. It is to be appealed this week.

2 likes
Reply

Actemra wasn't mentioned to me at all just MTX and the other one so guess it's not available here

Reply

I have been on leflunomide for a year and have done extremely well. Did not have any side effects. I have blood work done before my visit to the rheumatologist to monitor my liver function.

1 like
Reply

I called into the chemist earlier and asked for a patient information sheet for both medications, so will have plenty to read tonight lol

Reply

There is a blog called rawarrior - the girl who writes it has a lot of info which is all well researched. mtx and leflunomide are both used a lot in RA and at similar doses, maybe you will find something useful there.

rawarrior.com/

1 like
Reply

Thank you :) will take a look at it this evening .... saved link to phone

Reply

was not able to stay on methotrexate as it had implications on my lungs....maybe. May not be your issue. If you take folic acid it deals with the hair loss issue. This disease is a crap shoot..

Reply

I lost a lot of my hair about 8 years ago which thankfully grew back after about 2 1/2 years no idea why it happened as it was a good few years later the GCA/PMR reared their ugly heads... I would be mortified if it happened again :(

Reply

I can not advise on PMR or GCA... All I can say is inflammation in all of us needs to be reduced by addressing our Gut Biome status. We can do this through food/ nutrition.

Probiotics will help to heal the Gut.

Leaky gut must be addressed.

IN do doing inflammation will reduce.

Please look up on the internet the excellent Docu-series BROKEN BRAIN. The episodes are free and up for 24hrs at a time before moving on to the next episode. They last about 1 - 1&1/2 hrs. Have a not book handy. Take notes.

There is another way.

It's Gut health.

You can do it.

Keep Hope. It can be achieved.

Much love

Poppy the 🐈

Reply

Thank you will take a look...

Just been reading the patient information leaflet for 'Methotrexate' and it clearly states in there that some patients have died through taking it.... not what I wanted to see :( may have to stick with Pred for a bit longer

Reply

Dear Suszannah

Please follow up on this issue with Probiotics, it's as vital to us all as the air we breathe.

Popps

Reply

Dear Poppy

I think you mean prebiotics.

Reply

Thank-you Piglette!

It's a bit like the "Ooo's of Montrose"!!! Ha ha...

Yes PREBIOTICS..my mistake, 😉😉

1 like
Reply

OH! Suszannah, my heart aches for you!😥 as many of us on this amazing site know, these two little buggers can really screw up our lives, that is bad enough! but to have to suffer an insensitive jerk doctor on top of it, would be too much!!.

Me? I would report him to whom ever is his supperiors! we unfortunates, who suffrage these maladies, mostly suffer alone! yes we get sympathy from those around us, loved ones, friends, but they have no clue, as to how it brings you down! I know, everyone, who have read your emotional post,send their love and good wishes for a speedy resolution to your dilema, kick that jerk in the butt, and let him know, you need help, not snide remarks!!

Bless You

Kentishgirl

1 like
Reply

Thank you for good wishes I'm just at a point where I do not know where to go, I have made a GP appointment but couldn't get in till 5th February :( the rheummy team are rude and unhelpful, patients leaflet says there have been deaths with people using it but it doesn't say why I do know if it's not taken correctly that can happen, just thinking I might chug along with pred a little longer till I have some decent answers from medical staff

Reply

Hi I’m sorry you have had such a tough time with your rheumy team. I am lucky mine is really good and works with me. I am also having problems tapering. Every time I get to 10 I flare and end up back at 15. I have just started tapering again on 14mg now. My main point is though that I have RA as well and was actually diagnosed with PMR whilst I was on methotrexate. I didn’t get any side affects from it other than it raised my liver results so has to stop it for that reason. I have also been on leflunomide but again had to stop that as it raised my blood pressure. Unfortunately I do suffer from allergies a lot but would have gladly stayed on the methotrexate if I could have as it seemed to work well. With every medication there is some risk but it’s outweighing the positive against the negative. Like others have said it has to be worth trying and you can always stop it. That’s the one advantage against pred.

Good luck and I hope you can come to the best decision for you. After all what is good for some isn’t always for others😁

Reply

Thank you for the insight. I also suffer from allergies and there are a lot of medications I can't take .. certain antibiotics, Tramodol, codeine and anti inflammatory... I read a copy of the patient information last night and it does state on there that people have died taking It, it is a scary thought before you even take them, I've never seen that on any medication before so that alone is tipping me away from it :(

Reply

washingtonpost.com/news/mor...

Thank you! Not fake news. I, too, have relatives in Washington State so appreciate the warning.

Reply

Hi Suszannah,

This is such a great discussion and I have been reading it with interest to see everyone's thoughts on this subject. I have found it very difficult to squeeze information about PMR/GCA from medical professionals so this forum has been a lifesaver for me with such a plethora of information and experiences.

My rheumatologist told me to start mtx with very little explanation and I walked out of there feeling just like you. I was devasted and scared and confused. I decided not to take it, I wouldn't even get the script filled until I knew more about it. I went to the Pharmacist and she was only a little helpful and assured me that if she were in the same situation she would definitely take it.

When I went back to the Rheumy a month later and told him that I hadn't taken it he was visibly unhappy and told me I would be on Pred for a very long time then and saw me out of his office. I went home and wrestled with it some more and decided to start taking it because I really didn't know what to do. After a while my hair started falling out and the Rheumy said to take more folic acid and that would be fine, it wasn't. I took folic acid every day and felt sick every day so when I caught the flu last year I stopped the mtx to recover quicker. The flu caused a flare and Pred went up to 18.

I never went back on mtx and I am feeling very good now on 5.5mgs Pred and reducing slowly.

I think one important thing to remember is that we are not all created equal and therefore have to make decisions that you individually can live with. There are many variables that contributed to the onset of the illness in the first place such as level of stress in your life, diet, antibiotics etc . I did a lot of research and realise that our diet plays a huge part in our health and recovery.

I saw a nutritionist who put me on the right track and I think Poppy_the_cat was on the ball with her advice. There are many foods that increase inflammation.

I know this is off the track of mtx and other drugs but I think it is the best. I have stopped eating all sugar, processed food, refined carbohydrates (no bread cereals rice flour or pastry. I don't eat red meat or cows dairy, but I do use goats milk and goats cheese. I eat a lot of raw green vegetables and salad, fish and nuts, as well as probiotics and tumeric, vitamin D and magnesium and I have improved out of sight. I know it may sound boring but my health is more important to me than my taste buds and my husband and I are so used to it we struggle to eat the old way now.

Tracey63anne said, what is good for some isn’t always for others, but good nutrition is for everyone.

I wish you nothing but the best in your decision.

Reply

Thank you so much for this valuable reply, it seems as these medics are a little blase prescribing these toxic drugs and not having the time or patience to explain the implications to people just expecting us to to as we are told, the experience I had with the Consultant has been ongoing from day 1 really there is a lot of friction between us as I don't think he likes being questioned, I had to remind him that I was due another Dexa scan (which showed Oseopenia in my spine) also he never ordered an RA blood level test (my GP ordered that). The experience at the monitoring clinic was awful the nurse didn't seem interested once I said I needed more information before I would agree to take it and told me to see the Consultant (which is not for another 3 months) I am so sorry you had all those bad experiences with MTX that's things I was worrying about... yes I have a huge amount of stress in my life that could be a factor also my diet is not the best but I will be looking into changes after reading your very helpful post, I have a GP appointment coming up so will take these issues up with him and also see if he can refer me to a nutritionalist.....im due to reduce next week to 13mg getting a little worried about that but will book a blood test a few weeks after ..... fingers crossed things will improve.... I know another lovely lady Content1 is due to start MTX Friday and she is in the same state of mind as me Terrified at the mere thought of it...

Reply

Yes Suszannah, I was very sad to read of what you were going through, I was a registered nurse and we were always trained to know that we were there to serve others and Doctors are paid to serve their patients. I have always had enormous respect for the medical practitioners but my views have changed. Don't expect your GP to go along with the idea of holistic medicine and nutrition, they are focused on drugs only and relieving symptoms, not finding the underlying cause. I had to pursue that road all by myself, even my close friends look at me as if I have two heads when I talk about food as medicine.

It really works though. I got my blood work results today and ESR and CRP are both under 3 and even though I am tired, I feel great. Also, I put on 3kgs when I first went on Pred but now I have lost that and back to 62kgs.

It is very hard doing PMR/GCA on your own which is why I went searching and found this forum. The way these ladies find research material for you and support and encourage you is absolutely life-changing. If you find a close friend or nutritionalist who can partner with you jump at the chance. xxx

Reply

You may also like...