Struck such a chord..: rawarrior.com/methotrexate... - NRAS

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Struck such a chord..

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rawarrior.com/methotrexate-...

How long do people think RA Warrior means for pushing through with side effects of medications such as MTX? I wonder if she would consider 18 months long enough? I felt much better after reading this blog though - it confirmed that side effects can vary from week to week and that she feels exactly the same way as I do each time the injecting moment comes round again.

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I can see why this struck a chord with you! How does she manage to encapsulate RA battles so perfectly? xx

I know. I love the bit where she says she wins every week - or loses - and isn't sure which?! This so resonates. Xx

Dogrose profile image
Dogrose

I'm just about to go back on it. It's crazy that you get biologics because you can't take MTX then get told you need to take MTX with the biologics :-/ I'm only going to be on 5mg which is a pretty minimal dose so I doubt I'll notice it that much! xx

lorann profile image
lorann in reply toDogrose

Dogrose, I can only tell you, from reading several research reports, that the Biologics were developed to work along with MTX. They won't be effective with out it, as it would be like leaving out part of the Chemical formula. I don't know if the amount of MTX varies with each Biologic. Good research question ! Good luck, keep on hanging on, give it all time to work the way it should. And Relax, be cool, stress and tension also slow down the progress! Loret xxx

in reply tolorann

Lorann- Biological do work without MTX, perhaps not as quickly and although it is recommended that DMARDS are taken in conjunction it is not essential .

I currently am taking biologics without any DMARDS as my RA did not respond however my liver kicked off big time

lorann profile image
lorann in reply to

That is true, Katie. I just saw an advertisement for a new Biologic, that does not need MTX, for those who do not tolerate it, or have no good results with it. For the life of me, this morning, I can't exactly say the name, something like"Zejang"? I will pay attention and write it down the next time!

in reply tolorann

Might be Golimumab, Trade name Simponi, which although the data states with MTX, it is given without.

lorann profile image
lorann in reply to

That's not the one I saw,,,I've been taking Simponi for several years. This one is really new, guess I will have to keep my pen on my walker and write it down next time :) Thanks L xx

Hi Tilda, me again .... I was just looking at the RA Warrior site again having been reminded of it by your link. Reading through the page on Mtx side effects it I noticed that she really emphasises just how effective Folic Acid can be at reducing side effects. So just a simple thought - could you not try Folic Acid 6 days a week? Maybe you do already but I think I remember seeing that you take 'em 4 days a week & being surprised. Luce x

Agree with Woolly/Luce, I used to take FC x 6 days per week when taking MTX. I read the blog as well, and thought this could be Tilda writing this! At least you have found a common foe Tilda, I bet it made you feel a whole lot better to read someone else with the same symptoms as you. I hope you are feeling better than you have been of late. xxx

Thanks all. I saw the GP this morning so will try to find time to blog an update this weekend.

I do feel a huge sense of kinship with Kelly Young aka RA warrior - have even had email correspondence with her once quite recently, but not so much about me, more about the name change with RA issue.

I will try upping my folic but I have to say that when nausea first started for me it was as I moved up to 17.5 on tablets because of flares. I was already taking 6 folic a week just off my own bat and even wondered (on here) if that might be causing the nausea. So I'm pretty sure it won't make the difference. The rheumy I saw told me I could take 4 per week but felt concerned that any more might minimise the effectiveness of the MTX. I did read somewhere that people who have been on MTX with side effects for a long time discovered that things improved for them if they took folic the day of MTX an hour before - or same evening. This goes against what many are told but if it means we can stay on the wretched drug I suppose it would be worth experimenting with? Xx

Williamina1952 profile image
Williamina1952

Hi all you R/A sufferers are any of you on mtx @ hydroxychloroquine just started on them some advice please ,

Hi and welcome Wiliamina. You need to blog or ask a question using the heading "write a blog" or "ask a question" - otherwise you will just find all of us droning on about side effects and boring stuff like that. Whereas in fact the drugs you have been out in are pretty much the best combination and its just a few of us such as myself who have problems with them. I will say that they work brilliantly for my RA though! Tilda x

earthwitch profile image
earthwitch

I wouldn't put up with nasty effects for anywhere near as long as most people here do - I just don't think its necessary to do so when there are actually a lot of different meds and combinations out there. But, it really does depend on how often you get followed up by the rheumatologist, or how easy access you have to them, because I know twice when I have had to stop, its been six months or more before I got put onto something else.

I'd say personally six months tops, initially. Then a few weeks each time doses are changed. I also wouldn't be a martyr and hold off folic if that was helping, but make sure I was taking the bare minimum dose of folic that stopped the nasty side effects. Folic is there precisely for the purpose of reducing the side effects, so in some ways its silly not to take an effective dose of it. You would really only be reducing the effectiveness of the MTX significantly if you were taking a lot more folic than you needed - if you were only taking the minimum to get rid of the side effects, then the MTX should be plenty effective enough.

I will try again with 6 folic a week - have been taking 5 recently - but I don't think it will solve the side effects although may help take the edge off. Re things being done differently elsewhere - well RA Warrior is American and she's the one who suggests people should persevere / push through - despite the side effects? What interests me and gives me some hope is that I now know, from experience, that side effects do wax and wane as she says. Looking forward to some wain now I can tell you!

Re frequency of rheumy consultations - I think that part of the problem with these drugs is that they are pretty slow acting. If I had quit MTX at the first hurdle (mood swings and blisters) as one GP said I should, then I would probably not now be pain free and mobile. But equally I might not have been thoroughly fed up with the taste of sour milk and rust?! If I had quit at the second set of hurdles - nausea and catching every bug going around - I would not have found out that switching to injections could bring my ESR down from 62 to 26! So it isn't that simple and for me its taken 18 months to really feel this pain and stiffness free. But the price is very high!

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