my rheumy wants me to go on 10mg meth ea. week (after I had turned it down last fall) and he is pressing me now...I was diagnosed in july '18 with pmr, and went from 20 mg. pred to my now 10mg. tapering slowly to 9.5 with several flare ups inbetween… it is not covered by my insurance and I am reluctant to take it due to reading several bad experiences on this website and internet...please advise with your pros and cons about taking this drug.
thanks.
pat
I've been taking MTX since late December 2017. It was prescribed because I'd had two serious flares of GCA when trying to get below 25 mg of pred per day. I started on 10 mg per week and went up to 15 mg after a couple of months. I think it has been useful to me as I've had no flare since, and I haven't had any obvious side effects. I've reduced fairly easily to my current dose of 8 mg per day. I have a blood test every month to monitor MTX's effects on my liver and there's been nothing to worry about so far. I'm in the UK and don't have concerns about medical insurance, but I can understand that that must be an important factor for you.
Thanks Marijo,
I will most likely give it a try based on your and other's advice.
pat
Good luck. I hope you find you are able to taper pred successfully without flares. By the way, I take my MTX on Friday nights shortly before getting ready for bed. I set my alarm for 10 p.m. I found when I took it in the morning, that I was even more exhausted than usual throughout the day, though that might have been a coincidence.
I have written a My Experience with Methotrexate, l’ll forward it to you.
Interestingly l’m seeing a New Rheumatologist this afternoon with a view to starting it again, l’ll be writing a post later!
MrsN
I felt worse on mtx than I did with untreated PMR!
My experience with Methotrexate
I'd been on Prednisolone for a couple of years but could never get below 11mgs while I was working, so l decided to retire early to see if I could get the dose lower.
Following my Retirement I had two separate big flares & my Consultant at the time put me on 30mgx1week; 20mgx1week; 15mgx1week; he did this twice within a couple of months. It was from then on that things got out of hand & I had to keep going back to 20mg as 15mg was no longer holding the PMR at bay, it must have been about for around 10months, to be fair my GP was beside himself with worry, he eventually got me a referral to a new Consultant who started me on the Methotrexate. I really was not overly keen on this but by now I'd packed on 3stone, could barely walk without getting out of breath & my BP was through the roof, my resting pulse rate was 100+ so there was no choice but to try it!
I had the bloods & X-rays done then started on 10mg Methotrexate once a week for 2weeks plus Folic Acid 5mg on the other six days, then increasing the MXT to 20mg once per week.
At first it was unremarkable but after about four weeks I suddenly started to find the smell of cooking made me nauseous (on MXT day) l tried changing it to take at night but still the nausea persisted if l smelt food cooking, l was offered injections but declined; so l changed my MXT day, took a simple antiemetic, kept my food simple & within a week or so the nausea passed.
I came down 1mg Pred per month & happily got to 7mg when unfortunately l was diagnosed with Breast Cancer, so the Methotrexate had to be stopped for Surgery & then Chemo.
For about six months post Chemo the PMR held at 5mg but then as it started to raise its head again, l went back to 7.5mg & asked for a re referral to the Rheumatologist, she started me back on the Methotrexate at the end of October 2016 I'm now at 7mg; l have been down to 5mg but have varied between 5mg -> 7.5mg
Methotrexate is not an easy drug but then Prednisolone is a double edged sword, at first it did me good but then it started to cause me other issues. There are several people on this forum who've had bad experiences with MTX but I can only tell you my story & for me it did what the Doctors wanted.
That's why when the PMR started flaring again, l was happy to increase to 7.5mg but I chose to ask to add in the Methotrexate again, this time with no issues whatsoever.
It's very much a personal decision but for me it worked, I've experienced Chemotherapy since so Methotrexate for me second time around was an easy choice.
If you do start it I hope you do well & if it doesn't suit you it can simply be stopped, there’s no need to wean off it.
Don't forget to the take your Folic Acid as prescribed, my Consultant recommend's the other six days at 5mg but other Doctors have differing protocols.
If you have any specific questions please ask on the forum or direct message me using the two speech bubbles at the bottom the page.
Best Wishes & Good Luck 🍀
Mrs N
UPDATE
August 2018
Things have now changed for me regarding Methotrexate as I had high ALT Levels the MXT was stopped; l had a Liver Scan which shows l have a fatty liver so at this time l cannot take Methotrexate.
January 2019
Following my Fibroscan there has not been any other damage to my Liver, all my specific liver blood tests are normal, Cholesterol Level Normal & No signs of diabetes.
Comment
I can honestly say I’m missing the impact Methotrexate had as my PMR is flaring at the moment & in the past l’ve been steady on 5mg Pred & Methotrexate 20mg
If you have a specific questions I’ll be happy to answer if l can.
My Liver issues were picked up quickly before had any symptoms that’s why they do the monthly blood test.
Latest Update
I’m off to see a New Rheumatologist today as I’ve been steadily getting worse & as my blood levels (ALT) are now back to Normal, l hope Rheumatologist recommends l can go back in it!
I am going to start MXT again, this Consultants Opinion was that he wouldn’t have taken me off it but repeated bloods every two weeks to be absolutely sure. As my Liver Levels are now normal there is nothing to alarm him, so l will resume on a slightly lower dose ie 15mg & have two weekly bloods until he’s happy it’s not causing an issue.
Mrs Nails Good morning
You are such a brave lady. Your story is quite a fete and I sincerely admire your perseverance...
Your intel will help a lot of people who are contemplating whether or not to take methotrexate...
Volunteering with others, to moderate this great helpful forum, shows what a kind thoughtful person you and the others are.
Thank you, from the bottom of my heart.
YuliK.
Thank You YuliK 🌷
You’re awake early too! I was telling my new Rheumatologist about the Forum & he was most impressed!
It’s in my nature to try to help where l can & l appreciate your comments 🌷
I keep that post in Notes so it’s a quick Copy & Paste 😉 can’t keep reinventing the wheel.
Charlotte sitting tonight, so l may need a nap this afternoon.
Speak Soon
MrsN x
Mrs. N,
Thanks for your extensive description on Meththo...I am still afraid of taking a drug that may affect my liver (my son died 5 years ago from liver disease) but after hearing your story am thinking I should at least try it...You have been a great help to me in understanding my pmr over the last 10 months.
Thank you izzyart 🌷
I’m so very sorry about your son, how tragic.
Before you start MXT they take a whole raft of bloods, then you have them repeated each month & your prescription won’t be reissued if there are any concerns & your Folic Acid is very important but not on MXT Day.
You may have read l’m going back on it, new Rheumatologist said he wouldn’t have stopped it on one high blood result but he’s going to have my bloods checked every two weeks to be sure it’s going OK. All my Liver Levels are now Normal except for a ‘Fatty Liver’
I’m going to write a Top Tips for Taking Methotrexate/Dealing with Side Effects. Dr D was interested that many of us are taking MXT so l’m going to start a Poll on that.
When on MXT you have more support like the Rheumatology Team (Nurses) & they are extremely helpful in my experience.
Keep us updated & if you want a PM Chat just message me.
Kind Regards
MrsN
I have been on methotrexate for just over a month and, even though I was reluctant about starting it, I think it's helping. No obvious side effects apart from sore eyes and my aches and pains are much better. I do feel tired but is that PMR or what? On the whole I would advise trying it if you are having trouble tapering. As someone said above you can always just stop if it doesn't suit your body.
I’ve been on mtx for 2abd half years now. It has helped. At Christmas I decided to stop taking it as I wasn’t sure if it was doing anything. I thought my pmr may be getting better. Was ok for 3 weeks and then WHAM, a huge flare which I am still trying to recover from. Back on the mtx now. I have regular blood tests and so far, have been ok. Good luck. X
I was on Methotrexate for well over a year. It made me extremely tired especially for the first few days after my weekly dose. That probably lasted at least 9 months before I got used to it. No other problems with it for me.
Thanks Mozzie,
It seems that most replies advise for Metho so I will give it a try.
pat
There are a few tips we can help with if you’d like me to start a Methotrexate Tips Post.
MrsN
Yes please! Tips on coping with Methotextrate would be very useful.
Will Do, I’ve started & hopefully will post in the morning! 😉
I’ve posted Tips on Methotrexate as discussed & asked others to add anything else they have tried.
Then l will incorporate them into the main body of the Post.
If you have any new symptoms you can probably blame it on the methotrexate. I thought I was dying when on it. Some people do fine. But like me some do not. I even had symptoms my doctor had never come heard of. Once I went off of it all of the symptoms were gone. Although it took me months to get over the irritation it caused from upsetting my acid reflux.
It didn’t suit me but everyone is different.🌸
On Pred and going onto Methotrexate - help needed
Methotrexate Confusion
Methotrexate - information needed
PREDNISOLONE and Methotrexate
Methotrexate and tiredness
