A useful link about Methotrexate

[SheffieldJane]

I hope this works:

creakyjoints.org.au/patient...

You need to scroll down to get the podcast. The transcript is available if you press the info. button.

[Rugger]

Thanks Jane, that's very interesting and ties in with what my Rheumatologist has said about MTX. I was put off by the huge number of possible side-effects, but she explained that as it's been used for so long and every reported side-effect has to be disclosed, there are bound to be so many on the list!

[PMRpro Ambassador in reply to Rugger]

Shame the same thought doesn't occur to them about pred isn't it!!!

Most of the MTX adverse effects come from its use in chemo - just the mention of it gave OH the horrors. He hated it.

[SheffieldJane in reply to PMRpro]

I am sure the imposed guilt around Pred has a detrimental effect on our well being. Sarah doesn’t do that, she gets it. Methotrexate Scares me too. I am running out of options though.

[SheffieldJane in reply to Rugger]

Hello Rugger! I saw “our” Rheumatologist yesterday, so you can imagine it was on top for me. A student Dr took my case all over again, tested a patient questionnaire with me, then Sarah spent over an hour of quality time with me. I feel so much better. We are lucky! I hope you are doing well.

[Rugger in reply to SheffieldJane]

So far so good on MTX, after 4 months. I imagine I'm at the stage where it's supposed to start being effective. The main thing I have to go on are the blood test results, so 'looking forward' to the next batch in a month!

[PMRCanada]

Thx for sharing this Jane. Although I’m already on MTX, I still appreciate all the accurate information about what I’m putting in my body.

[JGBH]

Thank you for the podcast. I have experienced the dreadful side effects of methotrexate… many years ago. Was first started on a small dose in tablet form, then increased the dose a little but I felt so ill …. I felt I couldn’t digest any food at all, feeling sick, bloated, looking yellow, was unable to eat and was losing weight, etc. In fact I felt like my body was getting poisoned. When I mentioned this to my then rheumatologist she was so arrogant stating so many people were on methotrexate and did not have side effects… and suggested I tried the injections instead… I tried but I kept feeling much worse and simply told her I had to stop using it. She was furious… saying that it was part of the protocol of being offered a biologic treatment (in that instance Enbrel ) …. As far as she was concerned following the protocol was more important than the serious side effects and illness I was feeling. Eventually she said I could come off methotrexate but should Enbrel not work without it I would have to take it again or Enbrel would be withdrawn,.. I agreed but had no intention of ever taking methotrexate again. Enough damage. It took a few weeks for me to feel better once I stopped methotrexate and Enbrel worked for just over 14 years without methotrexate! The longest time a biologic worked well for me. The arrogance of doctors… and the danger they feel entitled to expose patients to in incredible.

[SheffieldJane in reply to JGBH]

That gives helpful balance, you’ve just voiced my fears. I am so sick of feeling sick. My Rheumatologist says it either works or it doesn’t and you soon know. I think I am the queen of side effects.

[powerwalk in reply to SheffieldJane]

I'll fight you for that title!! Total disaster with meds. I look at someone I know and she can take anything on this earth and not have side effects, makes me jealous!! She's the same with alcohol and I'm a disaster must be some people's makeup. Are you still considering the Met? Is it to help pain?

[SheffieldJane in reply to powerwalk]

It wouldn’t be pain, it would be to get off Pred. I have raised blood pressure, high blood sugar and I feel utterly wiped out. Pred and I need to part the ways and Methotrexate seems to be my only alternative. Tocilizumab has left me with painful Diverticulitis ( three months after stopping it). This would be after Australia though. The AA family of drugs is also being pushed again for Osteopenia of the spine. I also know people who quietly get on with these drugs without any bother.

[PMRpro Ambassador in reply to SheffieldJane]

Doctors are partly right when they claim it is expectation. If you expect to react to whatever you take - you are much more likely to do so. I assume it'll be fine unless I have experienced otherwise so when I do react I'm pretty sure there is a problem! With the statins I DID worry the second time round - but the effect was totally different from the first time. It was still enough to stop taking it!

Three of the drugs I have in red on my notes I really didn.t know anything about or what might happen - morphine sends my BP into my boots so its a no-no and I had a genuine allergic reaction to an ACE inhibitor, i.v. diazepam triggers long severe atrial fibrillation episodes!

[SheffieldJane in reply to PMRpro]

I was so positive and pleased to be prescribed Tocilizumab and probably stayed on it way too long. I am now constantly in some degree of colon pain from Diverticulitis with a limit to the food and drink I can tolerate. I bet I’ll be stuck with this damage forever. It even hurts the bladder. The meds I’ve been given by the GP are feeble and cause painful constipation. ( Mebeverine).

[powerwalk in reply to SheffieldJane]

Its difficult, not an easy decision. See how you get on and if you do try the Met when you come back, you can stop it if it doesnt agree with you as far as i know. X Australia thats great to have, hope your well enough to enjoy it and the family.

[SheffieldJane in reply to powerwalk]

Thank you for your support. I always appreciate it. 🤍

[JGBH in reply to SheffieldJane]

Some people suffer from side effects more than others and each of us knows when this happens. We can refuse treatment if it makes us worse, it is our body, our life. More doctors should understand that. Naturally it never is easy finding a solution when we are so much in need of help. x

[SheffieldJane in reply to JGBH]

To be fair to my Rheumatologist, she does get all that but doesn’t want me to give up without a fight.

[JGBH in reply to SheffieldJane]

Of course, they do try to help which is far from easy when a patient reacts badly to a drug. It is never easy, be it for the patients or the doctors.

[PMRpro Ambassador in reply to SheffieldJane]

Did Sarah say how quickly she finds you know if it is working?

[SheffieldJane in reply to PMRpro]

Well we know it kicks in in about 3 months but she said the acute sickness after a dose ought to go in 3-4 days. Not with me I bet.

[PMRpro Ambassador in reply to SheffieldJane]

There are only 7 days between doses ... To be fair - the only thing I DIDN'T have was nausea. Christian said to take half before bed and the rest in the morning as he finds that reduces the nausea a lot.

[SheffieldJane in reply to PMRpro]

I think the implication was that was at first. She is great at coaching and pep talks but unless she moves in with me. I think I’ll fail.

[PMRpro Ambassador in reply to SheffieldJane]

Would she also start you at a low dose and move up? That is also felt to make a big difference. If you go in thinking you will fail - you will.

[SheffieldJane in reply to PMRpro]

I know. 🙁

[KASHMIRI1 in reply to JGBH]

I felt as you describe when l was taking Leflunomide. Just as if l was being poisoned. It was horrible. My rheumatologist was fine about me stopping it thankfully however l am now 8 weeks into taking Methotrexate. Fingers crossed l don't have adverse effects.

[JGBH in reply to KASHMIRI1]

It is certainly scary and upsetting when one feels like being poisoned by a medication. Let’s face it, all drugs have side effects. It’s a question of how impacting on one’s wellness the side effects are. Since we’re react differently to drugs you might be alright with methotrexate. Only a trial will make this clear. Hope it works for you.

[KASHMIRI1 in reply to JGBH]

Fingers crossed then hopefully an end may be somewhere on the horizon to the continual round of the strong and strange drugs we are all prescribed. Hope things go well for you.

[MrsNails]

Thanks Jane for this - has Sarah had anymore thoughts about you trying MTX?

[SheffieldJane in reply to MrsNails]

Yes, she is urging me to give it a try. It is apparently good for other types of Vasculitis apart from GCA/LVV, and can be curative not just palliative. More tests on the way for head and sinuses. I am apparently a “ complicated patient”. It either works well or it doesn’t, she tells me.

[JGBH in reply to SheffieldJane]

Doctors always find patients “complicated “ when they can’t find a straight forward treatment for them, if one doesn’t fit the boxes they are used to tick. I can understand it isn’t always easy for doctors to find the perfect ‘safe’ treatment all the time and it takes patience and more work in trying to find an acceptable solution.

[SheffieldJane]

At least I don’t find myself abandoned like some.

[SusanEleven]

Thank you for this. I may be started on methotrexate in the near future. While my PMR seems asleep my docs are still trying to sort out if the abnormalities in both lungs show ANCA vasculitis. My rheumatologist said her first choice of treatment would be methotrexate plus prednisone. No rest for the weary. I’m still on low dose pred to keep the pmr happy.

[SheffieldJane]

good luck! 🍀

[SusanEleven in reply to SheffieldJane]

Thank you. And sadly my pmr or something else is back to fully awake.