Positive stories about MTX and hydroxy? : Hi everyone... - NRAS

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Positive stories about MTX and hydroxy?

Bon1 profile image
Bon1
15 Replies

Hi everyone

Another day another question. Knees seized up and jaw clenched. It's back. I am adjusting my brain to accept that MTX alone is not cutting it and without something else added in I am never getting off these steroids.

Rheum nurse has told me if things don't settle this week I am to call back and try and get an earlier clinic appointment to start hydroxychloroquin.

Has anyone found that this combo worked for them?

Gratitude as always

Bon

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Bon1
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15 Replies
Leonwp profile image
Leonwp

I did quite well on that combination until i had to dtop the MTX but hydroxychloroquin has been the gentlest med so far for me, the one that i have had the least problems with and tolerated the best. Hope it works out for you.

Blessings

Bon1 profile image
Bon1 in reply toLeonwp

Well that's hopeful thanks L. Could you remind me why the MTX didn't work out for you?

X

Leonwp profile image
Leonwp in reply toBon1

Liver enzymes went way too high after 5 months and went to normal after i stopped.

margarete-72 profile image
margarete-72 in reply toLeonwp

is this a tablet or patch

Leonwp profile image
Leonwp in reply tomargarete-72

Methotrexate is a tablet or if poorly tolerated can be an injection, Hydroxychloroquin is only in tablet form as far as i am aware. Due to the nature of the drug i dont think they could be manufactured as a patch because i would doubt they could be absorbed through the skin. I hope thst helps

Blessings

margarete-72 profile image
margarete-72 in reply toLeonwp

thanks iv added I can't have as u have kidney trouble x

Bookworm55 profile image
Bookworm55

Hi. Yes I've been on that combination since diagnosis a year ago and so far has worked well for me. Am on 200mg hydroxychloroquine a day and 17.5mg mtx a week atm and was able to come off the steroids completely by last October. Many people seem to find a combination of two or more drugs works better than one to control things - with no more side effects than with one drug.

Dawn7 profile image
Dawn7

Hi, I'm on combo of 200mg hydroxichloriquine twice a day and just changed from 20mg MTX oral (because of sickness and fatigue) to injectable 15mg MTX ... but my last oral dose of MTX at 20mg spiked my liver readings pretty high so had to delay starting injections till last week when blood test came back Normal....so holding my breath for another blood test after next injection...to see if my liver behaves....but I have found while being off the MTX my symptoms began to flare again, so it showed apart from liver problems..not good obviously... the med combinations were dampening down the RA...double edged sword for sure!! I hope all goes well for you.

sylvi profile image
sylvi

I am on this combination and i have to say it is working very well for me. Before hydroxy was added my fingers were so sore and swollen and now they are more or less painfree and not as swollen as before.xxxxx

Mimi21 profile image
Mimi21

I was on that combination for about 6-8 years and did well on it. Only stopped the hydroxychloroquine about a year or so ago when optician found problem with my eyes . It ended up being nothing to do with medication and nothing serious but I never noticed a difference for not taking it so it was decided I wouldn't take it any more. I'm now on biologics and methotrexate

Kate23 profile image
Kate23

Hydroxychloroxine worked well for me, you will be advised to have regular eye tests as in rare cases it can affect your eyes ...MTX for me didn't work, (liver enzymes).. So Sulphasalazine has been added .....I've only had one short course of Prednisolone in the 2 years of getting R.A. and for the most part feel the disease is being controlled quite well.. Good luck with your new meds, it's all trial and error.

Rafrancie profile image
Rafrancie

Yes, I initially was started on hydroxy chloroquine only. I have HepC as well and doc was hesitant with methotrexate. After a year with several flare episodes and xrays showing degeneration of joints, I was started on oral dose methotrexate. It did make a difference but I recently was switched to weekly injections for even better results. No flares for 3 months or more! I am tolerating well, a little nausea at first. No other side effects as long as I take folic acid. Wishing best for you!

Doughnut61 profile image
Doughnut61

I am taking 200mg HYDROX plus 17.5 MTX and 10mg Predisolone, liver results high still having blood tests fortnightly. All much better in joints but worried about my liver ☹️☹️ I am sure they would stop the MTX if they were too concerned. Not had half a lager or small glass of red for 7 months ☹️ I do miss my weekly social drink ! But on a plus at least I'm not in agonising pain anymore 😄

margarete-72 profile image
margarete-72

iv never had these iv had morphine tablets and patches they didn't help plus they made my tummy bad. so I stopped them x my right ankle gave way this morn pulling g my knee and leg x I get so fed up as well xx

nomoreheels profile image
nomoreheels

I started them the other way round back in 2008, HCQ first then MTX was added. Initially the HCQ worked, along with a months course of steroids & a couple of NSAIDs. Once the HCQ fully kicked in I was fine on just that & the one NSAID for around a year then it started to become less effective. As I'd started it on 400mg a day, the highest safe dose for RD, MTX was added. For some reason this double therapy didn't work so the HCQ was stopped & the 15mg MTX was increased to 20mg. Side effects & high LFT's meant I had to reduce back down to 15mg & at around the same time my Consultant left for a new post & the new one changed my tablets to injections & another increase back up to 20mg. It was then I had brilliant results but the LFT's were high again so went down to 17.5mg this time where I remained for a good few years until my current Rheumy increased it to 20mg because of disease activity in my feet despite me explaining what would likely happen. Well, it did of course so back to 17.5mg I went & that's where I've remained. I've tried double therapy since with SSZ but side effects meant that has to go but now it's with LEF. I've yet to see results but hopeful! My Rheumy here started me on a low maintenance dose of deflazacort back in 2013 which I'm still on though I do wonder when she'll agree I can stop then just how well MTX & LEF would cope. I've a sneaking suspicion that she's stalling me progressing to anti-TNF's given I'm on my 4th DMARD now, we'll see.

The reason for the tale is to show how it can be finite, the smallest dose increase/reduction or combination can make a difference to being well controlled or not.

I hope you do well on MTX & HCQ. You never know you may just find it's your combination.

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