Pred and methotrexate

[Flivoless]

Just had my first meeting with Rheumatologist (the first medic I have actually seen in person) since being diagnosed with, probable, PMR in April. She is not convinced that I actually have PMR and suggests it's rheumatoid arthritis and wants me to consider taking methotrexate, reducing pred down to 15 mg (I'm currently on 20) and then methotrexate every other day. I also had x-rays of hands, feet and chest (?) which were all fine. Finally had blood taken for what seemed to me were every test known to medical science (it was certainly at least an armful). Has anyone else had similar suggestions made re. methotrexate interspersed with pred?

[PMRpro Ambassador]

You will find a whole load of posts about methotrexate in the FAQs:

healthunlocked.com/pmrgcauk...

Has she given you any reasons why she thinks it is RA? It isn't unusual for the GP's PMR diagnosis to be revised by a rheumy - and a DMARD added. However - I would want to know why she thinks that. Particularly since she obviously had decided before she got the results of the bloods - I had a similar experience with a consultant who was quite sure I had anything but PMR but each test came back negative. After having whatever it is I have for over16 years, there is no sign of any of the things they suggested, which ranged from osteoarthritis to psoriatic arthritis! Was your response to pred slow or incomplete when you started?

The other question I would insist on an answer to is why she is proposing to use methotrexate on alternate days. The usual way is once weekly.

[Flivoless in reply to PMRpro]

Thanks for your reply. No real reason just her "10 years experience". When first "diagnosed" (over the phone) I was proscribed 15mg which had little effect after a week but when upped to 20mg no pain whatsoever in two days. Personally, I think this particular Rheumy is just very anti Pred.

[PMRpro Ambassador in reply to Flivoless]

Plenty of them!!! For some reason they think MTX is a lot easier to live with than pred - which is fine if it works for you but I'm sure you know that it doesn't always work for RA and certainly doesn't always work for PMR!!! Plus it has its own side effects. I felt worse on MTX to try to reduce pred than I had ever felt with untreated PMR - which really isn't the idea.

But the alternate day dosing of the MTX seems strange - I know it can be done. Maybe she finds it results in fewer adverse effects.

[Robinre in reply to PMRpro]

Just a question for you about Methotrexate? I have the MTHFR mutant gene and I should not take Methotrexate. Have you heard of this. It is in all the literature I have read about MTHFR. I should think that patients would want to have their DNA tested before taking any drugs.

[PMRpro Ambassador in reply to Robinre]

There seems to be some dispute about whether it is implicated in rheumatology. One study found it wasn't associated with increased MTX adverse effects in juvenile RA patients. OTOH, it IS associated with problems in haematological oncology treatment. I assume they wait and see how the patient gets on with it,

[Robinre in reply to PMRpro]

Thank you for the information. I will follow up on that.

[piglette in reply to Flivoless]

“10 years experience” eh? Humph!!

[GerriMc in reply to Flivoless]

That was the same for me. Start on 15mgs with little effect, then went to 20mgs and was pain free. My rheumatologist said I was a bit Pred resistant but it was definitely PMR. I did end up taking methotrexate once a week as I couldn’t get any lower than 17.5 mgs. I think it did help and I didn’t really experience any significant side effects.But I definitely wouldn’t accept that having to start on 20 mgs Pred is an indication that you don’t have PMR. I think a lot of people on here have had a similar experience.

[prunus in reply to PMRpro]

What does DMARD stand for?

[PMRpro Ambassador in reply to prunus]

Disease Modifying AntiRheumatic Drug

[MrsNails in reply to prunus]

You may find this helpful healthunlocked.com/pmrgcauk...

[prunus in reply to MrsNails]

Many thanks for that.

[Maisie1958]

Hi, been on Pred 6 years since diagnosed with PMR and did very well on tiny doses till recently - managed to see a lovely rheumatologist who thinks there is now a definite seronegative Inflammatory arthritis going too, I’m not completely convinced but things have definitely changed - proper joint pain now so about to start methotrexate. I’m on 5mg of Pred daily which l honestly think is more than enough- l feel fine! I’ve never heard of methotrexate being used on alternative days - that seems a bit cavalier but am still very much a newbie to DMARDS. I’m feeling a bit more sanguine about methotrexate now but I’d want to be sure it was justified. Low doses of Pred has served me very well till now.

All good wishes.

PS presume the chest X-ray was a precaution- they like you to have one before starting on methotrexate incase of mtx pneumonitis

[PMRpro Ambassador in reply to Maisie1958]

If it IS an inflammatory arthritis the role of the MTX is to alter the disease process so that less damage is done to the joints - and it does work best when started BEFORE any erosion gets set in. MTX has played a great role in reducing the disability that used to be seen so much in patients with RA. So if things have changed and point towards that - it is definitely worth trying. It is the first line - it may not be successful and then they would try another. And they don't jump straight to biologics because all the drugs may stop working eventually so you want to keep your powder dry - just in case.

[Maisie1958 in reply to PMRpro]

Thanks I’m a bit in denial but things have definitely changed and my rheumatologist certainly didn’t make any rash decisions- no joint erosions seen sofar but plenty of imaging - I’m thinking that my hands and feet look nothing like my lovely friend’s who definitely has RA but for various reasons hasn’t had gold standard treatment. Had a vg telephone consultation with a rheumie nurse yesterday. Will see how things go 😊

[Mystik in reply to Maisie1958]

Totally agree methotrexate Is once. Week !

[Maisie1958]

That’s interesting as I’m sure I had “just” PMR probably with a dash of LVV in retrospect that did very nicely on homeopathic doses of prednisolone till last winter when things went wrong. I think it would have settled on much larger( for me) doses of prednisolone but the GP decided it had to be OA and PMR doesn’t last for more than 2 years and stop Pred- did me a favour indirectly I guess as forced me to consult a rheumatologist privately and luckily got a good one. I was completely incapacitated without prednisolone! I’m on 5mg daily now and I have no joint pain at all but symptoms of inflammation have always seemed to fluctuate for no apparent reason with me anyway.

All the best

[MrsNails]

Hi, l’ve been out n about today so have only just seen your Post, l have a lot of experience with Methotrexate (2014) & l have not heard of it being taken every other day nor can l find any reference to that online. The only options l’ve seen are the dose being split into 3 & taken over 36hours ie every 12hours. I’ve had Two Consultants & a Couple of Locum’s since being on MTX but the dose has always been weekly. And as far as l know people with RA take MTX weekly also. Are you in the U.K?

Kind Regards

MrsN

[Flivoless in reply to MrsNails]

Yes. Maybe I misunderstood, she was going on bit, although I have read elsewhere that taking Met solely on a weekly basis is not always a given. I certainly won't be making any decision until I have the results of the plethora of blood tests and receipt of the rheumatologist's explanation letter.

[MrsNails in reply to Flivoless]

You should get an opportunity to speak to a Member of The Rheumatology Team before you start any Treatment. Please let us know how you get on & what the Letter says.

Best Wishes

MrsN

[Flivoless in reply to MrsNails]

Thanks

[Maisie1958]

Thank you for this.

[Thelmarina]

My rheumy, a sensible woman, has mentioned MTX very reluctantly should I be unable to get past 7mgs. My consultant niece says MTX is for rheumatoid arthritis and not really useful for Polymyalgia. Just throwing this into the mix! Like everyone else I’m wary of adding yet more drugs with yet more side effects, unless it’s really worth it - and one thing for sure is that with PMR we tread ambivalent waters!

[Gibguy]

MTX qod makes NO sense! !!!!!

[Jooster]

I also saw a rheumatologist this week who has diagnosed psoriatic arthritis as Dadcue suggested! He hasn't said it wasn't PMR originally, especially when I described the miracle of pain relief with pred. He has asked my GP to organise Xrays and bloods(I had to pay privately to see him as NHS waiting list is 6/7 months locally) and then wants to see me to treatment plan the MTX. I'm sure he said I would take the medication weekly. I have also made an appointment to see the rheumy at the hospital to get on their books so to speak, as this is probably going to be a lifetime management thing. I also was wondering about taking MTX while still tapering the pred, can you do this? I forgot to ask. I am now down to 13.5mg from 20, and feeling fairly good.

[Maisie1958 in reply to Jooster]

Hello Jooster , I haven’t started on mtx yet but pretty sure you can take it while tapering Pred, at least that seems the plan with me. Like you I was diagnosed with PMR but then was getting proper bilateral joint pain and saw a rheumatologist privately. She thought original PMR likely correct but now with the add on of some sort of seronegative inflammatory arthritis, referring me back to her NHS clinic - just had a telephone consultation with nurse this week and the process of initiating methotrexate has begun. You have probably already read it but if not “Versus Arthritis” website has good general information on psoriatic arthritis and various treatments. Hope you get sorted soon.

[Jooster in reply to Maisie1958]

Thank you Maisie1958, this is one strange journey! I have to see the rheumy again when he has the results from my XRays and bloods, which he has requested my GP organises on the NHS. He also has suggested i get on an NHS list as will probably need lifetime follow ups. I'm just glad to feel I'm getting somewhere! Thank you for your reply, and hope you are doing well.

[MrsNails in reply to Jooster]

You need to be on the NHS for MTX as you need regular blood tests, 2weekly to begin with; monthly until you are well controlled & then 2monthly. You will also have access to the Rheumatology Nurses who are invaluable & always happy to answer your questions.

My Story & Tips on MTX Management are in FAQ - let me know up if you can’t find them or have a specific questions.

Kind Regards

MrsN

[PMRpro Ambassador in reply to Jooster]

Will the private guy not add you to his NHS list? They often do.

[Jooster in reply to PMRpro]

I think his NHS hospitals are the other side of Kent, He only does private at the one nearest me in Sevenoaks. Im OK with this, just glad to actually see someone and have a face to face consultation!

[MrsNails in reply to Jooster]

Hi Jooster

The reason they add in the MTX is to help you Taper the Pred; l went from 18mg to 7.5mg by 1mg monthly to 9mg & from there on by 0.5mg as ideally we should not reduce by more that 10% of our current dose.

You can find My Story & Tips on MTX Management in FAQ - let me know up if you can’t find them or have any specific questions.

Kind Regards

MrsN

[Jooster in reply to MrsNails]

Thank you MrsN, as I said to PMRpro it was great to see a doctor and show him my skin and sausage fingers and toes! As its such a lovely afternoon I shall have a sit and read the FAQ tips, onwards and upwards!

[Hiibilly]

Hi FlivolessI am on both Pred and Methotrexate and I too have had tests for every thing. I was diagnosed by my GP Feb 2020 and every time I tried to tapper the steroid I was in agony. I yoyoed between 15mg & 10 mg the lowest had been 8mg but could not function at all so went back to 15. I had an MRI in September and saw the rheumatologist in December . He suggested it could be RA and and methotrexate to help me taper. I am now 3mg of Pred daily and 15mg of methotrexate once a week. So that is working. When they reviewed my case in January I was in found to have a stress fracture in my left hip. Now waiting for a replacement. Like others have said all though this my second time on Methotrexate I have only ever been prescribed it weekly. I hope you get some answers soon. Wishing you all the best.

[Frewen1]

Hi there, just throwing this in - I have GCA, not PMR, was put onto MTX alongside Pred a few months ago after a flare. Currently weekly 10 mg MTX, daily 17.5 Pred. The effects I immediately noticed was that the jelly-like heaviness of limbs was increased, and latest development happened this week when walking along normally, simply stepped off kerb while crossing road, leg buckled underneath me for no reason at all, now have an ankle fracture and have to wear a boot for 6 weeks. “Insult to injury” springs to mind ... just be prepared for extra weakness, is all I would counsel...

[GrandmaPirate]

My husband has reumatoïde arthritis very painful at the time it was finally diagnosed after eliminating all other possibilities. He was started on methothrexate and prednisolone to make his condition bearable. Then the prednisolone was tapered off and now he is since 8 years on methothrexate which is controlling his reumatoïde artritis very well.

[Flivoless in reply to GrandmaPirate]

Thanks, this is good to hear.

[PMRCanada]

Sounds like my first appointment with my (former) rheumy. I had been diagnosed with PMR by my GP, had classic symptoms, and responded well to pred. She insisted on tests for RA that came back negative and I had no other symptoms consistent with RA. She pushed methotrexate which I refused. She said o had seronegative arthritis. She also pressed me to follow the same tapering plan for pred that ALL her patients were put on (regardless of age, length of illness, co-existing illnesses, etc), which caused me to flare because it was too fast.

Eventually she accused me lying, and putting up my pred dose, when in fact it was her that did so based on blood marker levels that were high due to the rapid taper she put me on. So that was the end of our dr/patient relationship.

All this to say you must advocate for your health! You know your body/symptoms better than anyone. I would be wary that your rheumy has already made a diagnosis without all the investigative tests (bloodwork).

[cranberryt]

My GP dx PMR but the Rheumy wanted to change it to Seronegative RA based only on my age. I did a lot of research on both and there are distinct differences. I hit almost every mark for PMR but only half for RA. She wanted me off steroids and on methotrexate or plaquenil. I felt she wasn’t truly considering my symptoms and tests but only her my age and her training which teaches PMR is rare and never affects people under 50. I would say do some research on the differences and see what you feel rings true. I have a friend with RA on methotrexate and he is miserable on it but it does help the RA. So I really didn’t want to try it. Here are some articles to get you started.

[cranberryt in reply to cranberryt]

bpac.org.nz/bpj/2013/june/p...

[cranberryt in reply to cranberryt]

practicalpainmanagement.com...

[Flivoless in reply to cranberryt]

Thanks for this link. I certainly tick all the boxes for PMR, sudden onset, severe shoulder, and hip pain, pain abates somewhat during the day, et al. The only slight deviation from the norm was that I was also getting pain in my hands first in the morning but that also abated during the day and the x-ray I had yesterday on my hands didn't show anything untoward, in fact they are in very good condition for my age. I now can't wait to see what yesterday's plethora of blood tests reveal but I am now further questioning the Rheums' "guess" that I could have RA rather than PMR.

[PMRpro Ambassador in reply to Flivoless]

I had hand (and foot) pain - it does happen with PMR and you don't see it on an x-ray

[Nanna71]

I just wanted to wave a red flag here. One does NOT take MTX every other day. Once a week and a gradual start to it. I have RA with overlapping PMR and take MTX and pred, and sulfasalazine so whether you have the one or the other or both, check up on the MTX instructions because it is a big problem if you take it more than once a week. My experience is close to 3 yrs on these and I have done a massive amount of research on all the drugs I take. Hoping to be helpful.

[PMRpro Ambassador in reply to Nanna71]

Actually, although once weekly is the most common it can be dosed differently:

"When methotrexate is used for rheumatoid arthritis, it is taken either once a week or in three divided doses over 36 hours once a week. Folic acid is normally prescribed to be taken on a different day to methotrexate. Treatment of psoriasis with methotrexate is also prescribed intermittently over a week. Additional dose information is included in the data sheets for methotrexate2"

medsafe.govt.nz/profs/PUArt...

Not that that fits with on alternate days either.

This:

familydoctor.org/methotrexate/

mentions the alternate days concept: "Some people take it on a rotating schedule of alternating days"

Both sound confusing and likely to lead to overdose. I have heard of using 2.5mg doses more often before.

[Nanna71 in reply to PMRpro]

Thank you for the info. I have never come across that dosaging before, anywhere.

[PMRpro Ambassador in reply to Nanna71]

Me neither - which is why I spent quite some time looking!!! Once a week seems so much safer to me!!

[Portopetro]

My rheumatologist said the same to me . Originally thought PMR and put me on steroids but after a couple of months decided to reduce my steroids and introduced methotrexate as she thinks I have rheumatoid arthritis . So far so good having been on methotrexate for 4 weeks now and down to 5 mg of pred. She said she did not want me on long term steroids due to my lifestyle with playing lots of tennis etc. Talking to my son who is an anaesthetist he says if you can take methotrexate it is better for you long term than Prednisolone .