Six months on MTX and Hydroxychloroquine and 1st foll... - NRAS

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Six months on MTX and Hydroxychloroquine and 1st follow up appointment next week.

Rockpool60 profile image
9 Replies

Do any of you get MTX day + one ( I call it) where you feel you have the hangover from hell without the pleasure of a drink?

I also feel the last two weeks my pain has cranked up and yesterday felt that I was as bad as when I started :/

Seems strange. Gentle hugs xxxxx

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Rockpool60 profile image
Rockpool60
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9 Replies
megant profile image
megant

Hi Rockpool

I was put on MTX when I was first diagnosed in Feb, I started on 4 tablets and went up by 1 tablet each week, I was okay ish until I reached 8 tablets and I felt like death. I felt soooooo sick, extremely tired, was white as a sheet and still in pain. Perhaps like me the MTX just doesn't suit you, everybody is different, where a drug will work for some people but not for others.

Gentle hugs back

Alison

x

Rockpool60 profile image
Rockpool60 in reply to megant

Hi Alison. Thank you for answering my question sorry to hear you are not good on MTX. I honestly hoped I feel a lot better by now..maybe wishful thinking.

What are you taking now?

Hope the consultant answers some questions for me as the GP does not know anything..if I ask them about things to do with Rheumatoid Arthritis they shrug.

Have a lovely weekend x

megant profile image
megant

Hi I'm now on hydroxychloroquine twice a day, with dicofenac for the inflammation and odd occasion codine for the pain. I used to have steriod injection every 4 weeks because the pain got too bad, but the last time I managed to go nearly 8 weeks before having another injection so I'm hoping the hydroxy has started working. They do say it can take up to 6 months for the drugs to start working, so don't give up hope just yet.

Perhaps make a list of questions when you see the consultant so you don't forget anything, do you have a rheumy nurse that can give you advice??? My Doctor isn't that clued up on RA either but I have a fantastic rheumy nurse I can ring for advice on drugs etc. and of course this website is good for advice and if you need a good moan lol

Hope you have a pain free and lovely weekend too

take care and wrap up coz it's getting colder this weekend

Alison

x

helixhelix profile image
helixhelix

Yes, MTX day is a weekly occurrence....

I'm now on MTX, Sulpha and Hydroxy, as over time things have been added in. I started on MTX and was fine with just that for a bit (but can't hack more than20mg), but then started going downhill so Hydroxy was added. And then 6 months or so the same happened, and I got Sulpha added to the mix. Since the we've been upping doses and generally tinkering to keep my RA in check, and so far so good. So do tell rheumy exactly how it is for you, and give them the chance to adjust your meds. good luck. Polly

Rockpool60 profile image
Rockpool60

Hi Polly. Lovely to hear from you :D

I am on MTX 15 mg Hydroxy ..I was on Sulpha but had a severe reaction to it. Have felt not too bad until the last month. Feel like I am going backwards now. I will tell the rheumy on Tuesday when I see her. Fingers crossed she will advise something. My left knee is the sore and burning but not hot to touch. Suppose it is changes all the time :( take care xxxx

I think the side effects of these drugs can be cumulative? So you get a false sense of security when taking it and then one day - wham! That's certainly how I've been feeling this week - 7 weeks into injectable MTX and been doing great then something horrible occurred in my head and in my body with this week's dose. Just hoping it's a one off - in fact I'm determined that it will be!

Mostly I think that the side effects of these drugs are much easier to bare than active RA but occasionally for me it's the other way round. That said it might be worth switching to injectable MTX because it seems that this does avoid many, if not all of the side effects for a lot of us - And also I've been told that 15mg of injectable is more like taking 17.5 or even 20mg by tablet form in terms of its effectiveness. Maybe worth a thought? Tilda xx

earthwitch profile image
earthwitch

Its quite possible that you could be having a bit of a flare that your normal level of meds isn't quite dealing with. That can definitley happen with spondyloarthritis where you can still get flares (though not quite so bad) even on treatment, though with RA, if the meds are working properly as DMARDs its less likely. Might be worth reporting it to your rheumatologist and see if they need to make some changes in your medication regime to try and get a bit better control.

farjer121 profile image
farjer121

Hello RockPool.

Sorry to hear things are great, with time it will improve, just might take some of longer than others.

I have been on MTX since 2004 and struggled for many years...

I used to get MTX side effects (dizzyness/nausea/headaches) on the day after my weekly dose and then for some days after.

After a hospital shake up I changed to a different Rheumy team and they said take MTX in the evening and also prescribed Folic Acid to be taken the day after MTX.

This new way of taking MTX lessened the side effects, but one thing has not got any better is the memory impairment, which has got worse as my dose increased over the years to keep pace with the Arthritis.

Hope you feel better and this comes as food for thought.

All the best Farjer

ShiningStar profile image
ShiningStar

hello:) ,,ive been on MTX & Hydroxychloroquine for 12 months now ,,,im current on 6 tablets of Mtx once aweek on friday ,,,2 months ago when they were increased i felt so hungover ,,fatigued ,,terrible. I was told to space the tablets out more during the day ,,, every 4 hours also i was told to take more folic ,,,1 tablet monday to thursday but not on the day u take Mtx!,,,since doing so with in 3 weeks i starting to feel much better:) ,,,im due to have the Mtx increased 1 final time ,,,my doctor said because im a pettite lady too much would be harmful, so lets just hope it goes well! i hope this as helped hun x

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