PMR/unspecified arthritis /methotrexate - PMRGCAuk

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PMR/unspecified arthritis /methotrexate

alysonkerry-
alysonkerry-

Just wondered if any of you lovely people have been given methotrexate and how you have coped with taking it? Following on from previous posts re my husband and suspected PMR after taking a dose of 30mg prednisone he has now had it reduced to 25mg but started on methotrexate in increasing dosage amounts over next 3 weeks (taking meds once a week) along with folic acid 5mg once a week and two tablets each day of calcium/vit D.

All his pain has gone thankfully it disappeared on the 30mg prednisone and he generally feels a lot better . The potential side effects of methotrexate are quite scary and just wondered if anyone else had had a similar situation and wondered how you got on or if you had any advice. Thankyou to everyone who takes the time to share their advice and experiences it’s all invaluable :)

40 Replies
oldestnewest

Mrs Nails has done a series of useful posts about Methotrexate, you can do a search for them and the drug itself.

Thankyou will check them out :)

Hidden
Hidden

Hi alysonkerry.. You may be better looking at mrsnails posts. There are a lot but the methotrexate ones are clearly titled.

healthunlocked.com/user/mrs...

alysonkerry-
alysonkerry- in reply to Hidden

Thankyou and have done very interesting reading :)

Hidden
Hidden in reply to alysonkerry-

Mrsn still around and negotiating use of mxt so look out for more posts. 🌻

PMRpro
PMRproAmbassador

I was about to put what Poopadoops has said.

My personal experience with methotrexate was rather different. I've been on pred for over 10 years and struggle to get below 10mg although I had an amazing response to 15mg originally. So last year I agreed with my rheumy to try mtx. I had none of the usually expected side effects but even at the starting dose I ached within a few days and hair started coming out in clumps despite folic acid. I was permanently hungry - something that isn't a problem on just pred at any dose - and gained a couple of kg in a month. I bruised quite badly. And then the fatigue started - by the 4 week mark it was overwhelming. I'd already discussed stopping it to go on a long haul trip to Korea if I was having problems and having stopped it and then felt how much better I was I never started again. I have no problems at all with pred - weight gained but lost again, no sign of diabetes, bone density unchanged over 7 years of pred, skin fine, no bruising now my anticoagulant therapy is sorted better!

Thanks for your reply much appreciated and glad you are on an even keel now. It’s great to hear other people’s experiences when your new to all these drugs and newly diagnosed. Everyone is different I understand and it’s very early days for my hubby he had a day of tummy pains after his first dose of methotrexate but other than that has been fine . Takes 2nd dose tomorrow so will see how he goes but fingers crossed he’s ok. Blood test Friday . Really appreciate your reply . Like he says he will try anything as long as the pain stays away :)

I started on pred on 31st July 2017, a high dose of 60 mg as I had both GCA and PMR. At Christmas that year I had my second flare of GCA when trying to reduce to 25 mg of pred. This time I was prescribed Methotrexate 10 mg per week at first, increased to 15 mg after a couple of months. It did give me diarhoea at first but this was reduced when my folic acid was increased to 5 tablets per week. I haven't had any other side effects and as far as I can tell, it has helped me to reduce my pred dose. However I also have the advantage of a good rheumy who hasn't pushed me to reduce too quickly which must have helped greatly as well.

Thanku for your help and taking the time to reply glad you are doing ok it’s really helpful to hear people’s experience’s and much appreciated hopefully my hubby’s rheumatologist will be like yours and not rush the pred reduction thanks again :)

Hi alysonkerry, I’ve had another experience of methotrexate which you might find helpful. When I was diagnosed I had to increase my pred from 15mg to 25 mg to 30 mg to give sufficient pain relief and then followed Dorset Lady’s tapering programme . I was struggling to taper when I got to 14 mg so started on 10 mg methotrexate ( single dose) and 5 mg folic acid WEEKLY . I was a bit more tired the following day but was ok .

After 6 weeks my rheumy increased it to 15 mgs and I felt absolutely dreadful for 3 days afterwards each week . After 4 weeks I couldn’t stand it any more and rang the rheumy department and asked if I could reduce back to 10 mg. The rheumy nurse told me to keep taking 15 mg methotrexate but to take 5 mg folic acid DAILY apart from the methotrexate day . I felt much better immediately and am continuing on 15 mg methotrexate and 5 mg folic acid 6 days a week .

I’ve managed to taper down to 9.5 prednisone without any of the problems I had before, so the methotrexate is helping me .

Apologies for the long post ! I hope this info helps . PM me if you want to talk more . Katie

Sorry for eavesdropping, but am I right in saying increasing the folic acid helped you with the tiredness etc from the MTX?

PMRpro
PMRproAmbassador in reply to Reeceregan

I think a lot of doctors use the minimum amount of folic acid and many patients need more. mtx inhibits the folic acid pathway in the body so the tablets are a replacement and are to reduce the adverse effects. I upped my folic acid, though not to daily, but it didn't help my fatigue enough.

Reeceregan
Reeceregan in reply to PMRpro

Thanks PMRPro. I’m only on 5mg of FA twice a week, 48 hours before and 48 hours after the 10m MTX weekly injection which has just been increased to 15m. I’ve often wondered if that amount of FA was enough as so many on here seem to take much more. I’ve been on MTX for 9 weeks with no improvement and no side effects except the daily exhaustion.

PMRpro
PMRproAmbassador in reply to Reeceregan

When I got to the stage that walking back from the village felt like climbing a mountain I said that was it - and after 2 weeks with no mtx I felt human again!

Reeceregan
Reeceregan in reply to PMRpro

Yes, I’m afraid I’m looking for a lay down by lunchtime. Rhuemy has just put me back on 10mg pred as well for a week, then taper off, just to relieve the PMR or RA pain and stiffness and the tiredness till the MTX kicks in. But if the tiredness is from the MTX it may have to go.

PMRpro
PMRproAmbassador in reply to Reeceregan

Are you saying you are not on pred?

Reeceregan
Reeceregan in reply to PMRpro

Started back on it again yesterday, just for 3 weeks at this stage. He’s hoping the MTX kicks in. I was on pred for 2 years, for PMR, then after tapering , was off for 6 months. I was then diagnosed with RA, so put back on 10mg pred at the same time as MTX. I was to taper off the pred over 4 weeks, so 10, 5, 7. 5, 5 then off, while the MTX kicked in. I have been off pred again since beginning of November, but back came some pain and stiffness, and this dreadful exhaustion.

PMRpro
PMRproAmbassador in reply to Reeceregan

But for RA mtx can take more like months, not weeks. They allow up to 6 months before declaring it a failure.

Reeceregan
Reeceregan in reply to PMRpro

That’s why I begged him to put me back on the pred, to carry me over till I (hopefully) start to improve on the MTX but he’s not keen to keep me on it long term. I did have a lot of side effects on the pred over those original two years, but I was started on 50mg for 8 weeks before I started to reduce. This time it’s only 10 mg maximum and I can cope on 7.5mg but that seems to be my “happy” dose.

As a footnote, he did mention that along with the RA, he still feels there is some residual inflammation from the PMR but my CRP and ESR levels are within normal range.

PMRpro
PMRproAmbassador in reply to Reeceregan

But are they YOUR normal? Mine is 4 - 18 is still in "normal range" but very elevated for me.

Reeceregan
Reeceregan in reply to PMRpro

Mine were only ever elevated above the normal range for the first two blood tests back in 2017. I did work extremely hard with diet/lifestyle etc as well so he was always keen to reduce the pred quite quickly as I developed osteoporosis, cataracts and glaucoma resulting in surgery this year, lost a lot of hair etc blah blah blah, but I think we are both realising that my body doesn’t cope under 7.5mg. He still hopes the increase in MTX will help with pain, so he only wants me on small dose pred so I can reduce and then see if MTX takes care of everything. I’m just concerned the exhaustion will get the better of me once I’m off pred. IF pred would only stop the progression of RA as well as help with the PMR I’d opt for that rather than MTX.

PMRpro
PMRproAmbassador in reply to Reeceregan

Someone who refuses you a physiological dose is being unnecessarily uncaring.

I’d definitely ask for an increase in your folic acid dose . I take it 6 days a week now and it has made a huge difference . I was wiped out for 3 days a week before .

Yes I think I will. Have a few things to ask him at my next visit....but he’s used to my interrogations now, he won’t mind. 🤪

Thankyou that’s really interesting to know glad you have things under control my husband has had one week of 10mg meth and reduced pred from 30 to 25mg . Today he has to increase meth to 15mg then next Monday 20mg meth he only takes folic acid 5mg on a Friday each week at the mo . Although he has a blood test this fri and I assume every 2 weeks from then for the initial period of time they are playing with his meds we don’t have an appt until 6th Feb to go back and see rheumatologist so assume depending on bloods and how he gets on perhaps we will be contacted to adjust pred/meth in the mean time ?

Thanks again for taking the time to share your experience:)

I have my bloods check every two weeks too - they’re looking to see if the liver is compromised.

Yes Reeceregan , it was definitely the folic acid that has made the difference . On 10 mg and only 5 mg weekly of folic acid I felt wiped out the next day . Once on 15 mg I felt absolutely dreadful for three days each week and nearly stopped taking it but the rheumy nurse insisted that 6x5 mg folic acid would help the fatigue, nausea etc and it certainly has .

On this site I’ve noticed that some people are prescribed 5 mg folic acid weekly and some are prescribed 5 mg every day apart from the day they take the methotrexate.

If your husband suffers with the increase of methotrexate I’d definitely discuss an increase in his folic acid . My GP didn’t suggest anything and I couldn’t wait to see my rheumatologist so I rang the rheumy department and spoke to the rheumatology nurse . Likewise for you ,Reeceregan . It has been a lifesaver for me !

Thanku for your reply will definitely bear in mind what you have said re folic acid should my husband struggle with the increase in methotrexate much appreciated pleaser you seem to have your condition under control :)

Thanks katiemills. This “wiped out” feeling is wiping me out, that’s for sure. I took my first increase of MTX, from 10 to 15, last night, but I also started back on 10mg pred, so today I am almost an energiser bunny, with only minimal pain. I’ve managed to stay up all day! However, if increasing folic acid has the same effect, it has to be a better option than pred, as long as the MTX takes care of the pain, because folic acid won’t do that I’m guessing.

Methotrexate has been offer to me many times over my 5+ years of PMR, most recently and most insistently by my rheumatologist. So far I've declined the invitation, but greatly appreciate the experiences shared in this discussion.

Hello

My Rheumatologist advised me against taking this as he did not rate it - particularly the side effects

Gillrub

Thanku for your reply it’s interesting how different rheumatologist’s have their own opinions . The listed potential side effects are certainly scary will see how my husband gets on fingers crossed he’s not one of the unlucky ones.

I have had PMR for a year now and had trouble reducing from 20mg of pred so my rheumy recommended methotrexate. She referred to prednisone as an evil drug and methotrexate as a wonderful drug. So I agreed to try. I am doing the injections to avoid many of the side effects. I already have a sensitive stomach, so I know taking the pills would not go well. The injections are not that bad! I do the injection once per week. So far I have had no side effects. It took a long time before I noticed a difference. I was on my 7th injection before I started feeling any better. I just did my 8th injection yesterday. So it is still early days as far as being able to tell if it is working and will allow me to reduce my prednisone dosage. But so far so good ...

Glad to hear things are working out for you with the methotrexate although still early days. Hoping my hubby has similar success although he is taking the tablet form. Really appreciate you sharing your experience hope things continue to improve :)

I was diagnosed with PMR in July 2017. Reduced pred to 6 in twelve months but was stuck there for another six months. My rheumy decided MTX would help so started in Jan 2019. After the initial 10mg a week I increased to 20, but I take folic acid every other day than the MTX one.I've felt tired and a bit light headed but have managed to reduce to 2.5 pred by August and after being stuck there, have now reduced to 2 in December. Very hot here in Oz so maybe that's helping me reduce too. Cautiously optomistic the PMR is going as it's only wrists and ankles causing pain now. I hope your hubby manages the MTX and it helps him too.

Thanku for replying and info hope you keep progressing and improving . My hubby now on 17.5mg pred & 20mg methotrexate has terrible mouth ulcers headaches and metallic taste in mouth but this week was told to increase folic acid to every other day except methotrexate day . Thankfully has no pain and early days in pred reduction. But thankfully overall so much better Thanku for taking the time to respond and good luck with your improved well being :)

Hidden
Hidden in reply to alysonkerry-

Hi Alyson

The MTX destroys the Folic Acid in the body that’s why we take it as a supplement, l actually take it everyday except MTX Day.

Tell your husband to drink plenty of water when he takes the MTX. It can affect the mouth as it slows down the production of cells, the mouth is affected more as the mucous membranes are fast growing cells so it’s more noticeable.

Kind Regards

MrsN

alysonkerry-
alysonkerry- in reply to Hidden

Thankyou so much for the advice have passed it on to my hubby :)

I had to stop methotrexate due to breathing problems. Just seem to be someone who doesn't agree with methotrexate.

Sorry to hear that the ziggy but everyone is different hope you doing ok :)

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