Methotrexate alongside hydroxychloroquine - LUPUS UK

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Methotrexate alongside hydroxychloroquine

pattypatchwork profile image
8 Replies

Morning, due to my chilblain lupus blisters not responding well to hydroxychloroquine, my consultant has decided that I now need methotrexate as well. I don't know what dosage yet as I will have an appointment with a pharmacist within the next couple of week. Do any of you also take this combination? What side affects can I expect?

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pattypatchwork
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8 Replies
RosieA profile image
RosieA

Morning. I have taken both in the past. It is so difficult to talk about side effects as they (if they do occur) are so unpredictable. I was on Methotrexate for about 8 months and the main side effect for me was significant fatigue for a couple of days after the injection. Many people thrive on it, with no side effects. The main thing, I have heard people say, if taking it in tablet form, is to take it with food. I do so hope it does the trick for you.

pattypatchwork profile image
pattypatchwork in reply toRosieA

Thank you, that's good advice regarding taking it with food x

Murp17 profile image
Murp17

Hi

I take both hydroxychloroquine & methotrexate together I have been taking hydroxychloroquine for a long time & recently went onto methotrexate a year ago I am lucky I don’t have any side effects sometimes I can get really tired the day before am due to take the methotrexate which I take in tablet form. Hope this helps

pattypatchwork profile image
pattypatchwork in reply toMurp17

Thank you for letting me know that you don't get any side effects, hopefully I'll be the same. I've been on hydroxychloroquine for 5 years

BeeManShrop profile image
BeeManShrop

Hello PP My wife was taking methotrexate for about 15 years for her RA , with no side significant effects, until she had what we now know as a massive flare plus three different infections. At that stage she was taken off all medications. Eventually, a test came through to indicate that she also had SLE when she was prescribed hydroxy, which she has now been taking for 3 years. She never had need to go back onto MTX.

The only side effect she can recall re MTX was feeling slightly sick when she first started taking it. She was then given Folic Acid tablets that did prevent any further sickness. She has had no side effects with hydroxy that we know of. Having said that, it can be difficult to tell when you still have some ongoing symptoms of the disease like fatigue and lack of energy. Apart from that she is now coping quite well.

Hoping this helps, and Good luck

Krazykat26 profile image
Krazykat26

Hi patty 🤗I had MTX added to hydroxy in 2019..I started at 12.5 mgs and have increased gradually over the years..I'm now on 17.5mgs .Initially I was on tablets but went onto injection last year.

When I first took the tablets I had mild side effects of nausea, numbness in my left hand, slight headache and a bit of blurred vision in left eye. These effects only lasted about half an hour and only on the first dose..I've had no side effects since.

Your doctor will prescribe folic acid to take every day EXCEPT the day u take the MTX. We take it in the same day every week so my advice would be to choose a day that you're not too busy so you can rest..I do my injections in a Sunday. You'll probably have to go for blood tests regularly to start with so your doc can check that your liver and kidneys are ok. I had to have two weekly blood tests at first but now I have then six weekly.

It's made a huge difference to my quality of life. As you know I get digital ulcers and although they still break out they are more easily managed. I also have more energy than I did before being on MTX.

Best of luck 🍀💜🌈🦋xx

Kat136 profile image
Kat136

Hello, I'm very sorry however I will not give out advice on medications. This is a topic that you need to discuss with your doctor and pharmacist. I can no longer take hydroxychloroquine due to retinal damage. I have been on methotrexate for about 10 years now. It works reasonably well for me, my lupus is always active, l have never achieved a remission of symptoms. My disrase varies from grumbling along to terrible flares and all in between. For quote a few years l took the methotrexate in 2 half doses on Monday and Thursday. Now I inject a dose on Tuesdays. I have found that taking it as an injection has reduced the nausea the oral form caused and was why I took the half doses on two different days to try to reduce the nausea. I have met people who do not experience nausea at all.

I would write down everything you want to know, all the questions you want answers to and take that to your appointment, write down all you can remember immediately after the appointment and then any new questions you have, then either take these to the next appointment or if you can telephone and see if you can get the answers a little bit sooner.

pattypatchwork profile image
pattypatchwork in reply toKat136

Thank you for answering me x

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