Methotrexare

[Poppylop]

Hi all, went to see the rheumatologist today, I've been reducing from 40mg, I'm currently at 12.5mg, I'm still getting a few headaches but not as bad as they were. The rheumatologist has now told me to reduce 2.5 every two weeks but he has also prescribed me methotrexate to help me come off the steroids but after reading a few posts on here and reading about the side effects im really worried about taking it, my hair is already falling out quite badly and I really don't want it to fall out any more, has anyone has any good results on it

[Hidden]

Hi Poppylop

Do you have GCA & PMR? So he wants you to reduce by 2.5mg every two weeks until you get to Zero? ie 10weeks?

What dose of Methotrexate has he recommended you start on? Have they done baseline Blood Tests & explained the precautions when on MTX?.......

Kind Regards

MrsN

[Poppylop in reply to Hidden]

Hi MrsNails, I have pmr, I've been prescribed 15mg methotrexate to take once a week and 10mg folic acid once a week, I haven't had any bloods done since I was last there 5 weeks ago but he has given me three blood test forms that he said i have to get done every two weeks starting in two weeks time, he gave me a booklet to read about methotrexate which has put me off taking it, I have had pretty much most side effects with pred and I just know I will get them with methotrexate, also i have ulcerative colitis and ibs so don't think I will feel great on the new drug

[Hidden in reply to Poppylop]

Well he’s covered all the bases, l’m currently on 15mg Methotrexate but the expectation of dropping 2.5mg every two weeks is pretty high. Does he have a reason for such a rapid taper?

When l first went on MTX I reduced by 1mg per month, using a slightly adapted, slow method reducing successfully from 18mg to 9mg then from 9mg to 7.5mg in 0.5mg drops when l had to stop for Surgery & subsequent Chemotherapy.

I’m am currently back on Methotrexate at 15mg whereas l was on 20mg previously.

If you look on my Profile, l have written about my experience on several Posts.

Wishing you Good Luck 🍀

MrsN

[Poppylop in reply to Hidden]

He wants me off the pre d as soon as possible because he said I'm showing signs of toxicity and because I've had so many side effects. Each rheumatologist I've seen have all said they are not sure I even have pmr because they think I'm too young at 53 but I disagree, I'm sure I have it.

[SnazzyD in reply to Poppylop]

Time to copy some research or guidelines saying that age perfectly within the accepted range and take it to them?

[Hidden in reply to Poppylop]

These were published in last review in 2019.

cks.nice.org.uk/polymyalgia...

[Inika in reply to Poppylop]

I totally understand. I was 55 when I was diagnosed with PMR. And it took over 4 month with lots of shoulder shots and lots of different tests and MRIs as they thought I was too young for PMR onset. I had a long very stressful year before that. Probably that was the reason it started. I've been fighting it for 2 years already with two relapses and went from 25 mg to 3.5 now. And my Reumi said he had several PMR patients in mid 50's.

[GOOD_GRIEF]

If you've been diagnosed with GCA this is a premature taper of Pred.

If GCA has been ruled out, this taper is proabably too fast and too steep for PMR, MTX notwithstanding.

MTX takes 6-8 weeks befoer any effects are felt, and a full 6 months to achieve efficacy.

To counteract MTX side effects, take Folate every day except for your once-a-week dose of MTX. Ideally, you'll take the MTX after a week to 10 days of folate. Take your pred with breakfast, take 1/2 of you MTX dose with lunch and the the half with dinner. No folate on MTX day.

(This advice receive from a friend using MTX for RA. Works great for her. She's still on pred and also takes MTX. RA is a different animal altogether, though.)

[Poppylop in reply to GOOD_GRIEF]

Hi GOOD_GRIEF, did your friend suffer hair loss on MTX as I'm already losing loads on the pre d and really don't want to lose more.

[GOOD_GRIEF in reply to Poppylop]

That's one of the things the folate is meant to counteract, along with nausea and mouth sores.

MTX is a folate antagonist, meaning that it leeches folate from your system, resulting in the side effects. Taking folate the other days of the week minimizes the side effects.

She already had fine hair, but didn't notice a big difference.

Of course, your mileage may vary.

[Odosmum in reply to Poppylop]

I had no hair loss when I took MTX - 1 dose weekly followed by 1 dose Folic Acid the following day. The only symptom I experienced was feeling terrible for about 4 days and improving gradually until the next dose knocked me back again. I was taking it for Inflammatory Arthritis and stayed on the medication for around 18 months and it did not work at all. Blood markers remained the same and I did not experience any lessening of symptoms. I gave it a good go!

[piglette]

My gosh, I would have thought that sort of rate of reduction is heading for disaster even with Methotrexate. I may be wrong.

[Hidden]

I was on methotrexate for 6 months. I did not realize it was making me feel hypoglycemic so I ate on 80 lbs. my hair started falling out. I truly felt I was finally going to die... within weeks of getting off I felt like a new person. I actually have put it down as a med I am allergic too. So if you do go on just be aware of any changes. Oh my hair has grown back in thicker and curly.

Oh and because of the doctors trying so hard to get me off prednisone all it has caused is a huge yo-yo of up and down for 4 years. I think that is most likely more damaging than staying on higher doses.

I am at 10 mgs and plan to stay here for a few months. But my doctor has other plans. We shall see what happens.

God bless and good luck.

[Kingstontown1]

I am on 15mg so they increased my folic acid as I had same with my hair

[PMRpro Ambassador]

I trust he didn't lead you to believe that methotrexate will allow that rate of reduction immediately - or even at all? There is absolutely no proof of that anywhere and the studies that have been done on it don't really agree on anything, However, what the one study that did find it helped reduce the total steroid dose concluded was that it took a year to see any effect and at 5 years there was no difference in the incidence of so-called steroid-induced adverse effects.

My hair started to fall out in clumps within a few days - despite taking folic acid and increasing the dose. I had steroid side effects I had never had on pred. I had muscle and joint pain, developed cravings for carbs I hadn't had - I gained a kg in 4 weeks and have struggled to lose it. After the second dose the fatigue started and steadily got worse for the following 3 weeks until I said no more when I could barely put one foot in front of the other. I had no nausea at all - but the fatigue lasted until the day before the next dose was due.

It works for some people - but I have met very few where it completely replaced pred for PMR.

[Poppylop in reply to PMRpro]

I'm really considering not taking it and just reducing slower, I don't think I can cope with feeling poorly again, it was bad enough when I started the pred, other than the fat face hairy face and hairloss I can put up with the other side effects of pred because I'm sort of used to them now, I don't want to add a load more to it.

[PMRpro Ambassador in reply to Poppylop]

What problems do you have with steroids? I had problems with methyl pred but have been very lucky with both prednisolone and prednisone.

[pugrescue in reply to PMRpro]

I stopped taking MTX after 10 wks of it. Have not told rheumy or gp yet. Been off it for 2 months now, feel better, and has not changed my taper schedule.

[Marijo1951]

I've been taking methotrexate for just over two years. When I started I couldn't get below 25 mg of pred without flaring. My initial dose was 10 mg MTX per week, increased to 15 mg after a month. I went for blood tests every two weeks at first, soon reduced to once per month. So far my blood tests have been fine for liver and kidney functions. I haven't had any trouble tapering my dose since starting MTX but I can't be sure that this is totally thanks to MTX as my doctors are okay with me tapering slowly at my own pace which must help too. It seems to me that your rheumy is expecting you to reduce your pred too quickly. I reduce by 0.5 mg.

My hair didn't get thinner but it did go curly for the first time in my life. This effect has stopped and it's back to its old rat's-tail look. I had some diarrhoea in the first month. I told the rheumy and she increased my folic acid from one day per week to five days and it did the trick.

[BoaterAnnie in reply to Marijo1951]

Marijo, do you mind if I ask you what dosage of prednisone you are on now? I am in a similar situation to what you describe. I was on 22.5mg of prednisone and could not reduce when they added MTX. After 6 weeks of MTX I started reducing prednisone, but when I got down to 19mg I had a flare, so I'm back up to 20mg. I have been on MTX for 3 months now. I am going to wait a month and then try reducing again using the slow method. But I am wondering how much you were able to reduce the prednisone over your 2 years. Thanks!

[Marijo1951 in reply to BoaterAnnie]

I went down to 6 mg pred per day a couple of weeks ago. Actually in the last couple of days my shoulder pain has increased. It was so mild I hardly noticed it, but it's more severe now. I'm not sure if this counts as a 'flare' of PMR or GCA or if it's something else. I'm going to try standard painkillers and see if they have any effect. It doesn't restrict my movement too much, although I wouldn't lift anything very heavy from a high shelf.

[BoaterAnnie in reply to Marijo1951]

Okay, so that's about 1mg per month while on MTX. So far I haven't had much luck reducing, but I am going to try one of the slow methods next time.

[SnazzyD]

Hello, how exactly is “steroid toxicity” showing itself?

[Poppylop in reply to SnazzyD]

I don't know, I'm assuming blood test results, I should have asked really, he said he was worried I was being poisoned by the steroids

[SnazzyD in reply to Poppylop]

Hmm very emotive language not backed up by stating their clinical evidence. I also find it frustrating when Methotrexate is dished out without equal foreboding.

[Hidden]

I was really unwell on this,tried injections to but was not for me.I now get Infusion of TOCILIZUMAB every 4 weeks,i did not do well at the beginning but it is helping pain in wrist hands and knees,though still in lot of pain with trochanderic bursitis of both hips.I wish you well and hope all works out for you.Take Care xx

[CJ-pmr15]

Hi. I am really surprised at the speed of the suggested taper. Methotrexate needs to be taken for about 3 months before its effects kick in. I was prescribed MTX may 2019 after being on 10 mg for 4 years. I started on 10 mg, then went up to 15 mg. Waited 3 months, then started to reduce using the slow method. Half way through going from 9 to 8 mg had a flare up. MTX then increased to 20 mg and now at 9 again heading to 8. Initially had GI side effects, nausea, but was switched to injection and daily folic acid (rather than once a week, as originally prescribed). So tolerating MTX now.

So have now been on mtx 9 months and reduced pred 1 mg. Lol.

Good luck whatever you decide.

[CJ-pmr15]

Ps i was diagnosed at 50, 55 now

[BoaterAnnie]

I have been on MTX for 3 months. Because I have IBS, I chose to do the injections to avoid the majority of side effects and indeed I have had no side effects from MTX. I haven't been very successful at reducing prednisone so far, but I'm still trying. I am losing a lot of hair also, but I think that is from the prednisone because it started before I took the MTX.

[Carrollee]

Hi poppylop

You go to oxford don’t you? They are very pushy with mtx. Much the same was said to me about toxicity. I was even told early on In my treatment that “the problem with you is your a one drug person” as I didn’t want AA either and I had to consider the fact that the steroids could be more life threatening than my condition (GCA) (or words to that effect). I had only been on them for 5 months and 2 of those were at pmr doses. I resisted and wasn’t popular.

I got down to 4mg after 4 years and 9 months and changed to hydrocortisone 4 weeks ago to help my adrenals.

Study up all you can and then decide what’s right for you. All the best cc 🤗

[Poppylop in reply to Carrollee]

Hi Carrollee, yes I do go to oxford and yes they can be quite pushy, I have decided not to take the MTX, I had so many side effects when first starting the pred and felt really poorly for quite a while and I really don't want to go back to feeling I'll again, I'm just going to reduce a lot slower and see how I get on, i always get the side effects from medication. I too have not taking AA because I have ulcerative colitis and ibs, I had a dexa scan before christmas which I didn't get any results from but then last week had a phone call from the receptionist at my doctors to say she had made me an appointment to have a denosumab injection, I asked her what it was for and she said she didn't know but they had a letter saying I needed one, I googled it and again was worried about the side effects, the gp said i had osteopenia in my thighs and that's why I need it but also said the side effects where not great so told me to discuss it with the rheumatologist, when I asked him about it he said the osteopenia was minimal so I don't need the injection as long as I'm taking the AD-CAL so I'm hoping that's enough to keep osteoporosis away.

[PMRpro Ambassador in reply to Poppylop]

Someone wanting to medicalise osteopenia - and starting denosumab isn't a simple decision as once you start it now it is know you must either continue it indefinitely or switch to oral bisphosphonates to prevent the rebound loss of bone density they now know occurs. I think it is appalling to "make the appointment" without the patient having been provided with all the information. Informed consent !!!!!!!!

[Hidden in reply to Poppylop]

I think this is an article pmrpro circulated a while back. Well worth a read.

npr.org/2009/12/21/12160981...