Methotrexate and hydroxychloroquine: Are there any bad... - NRAS

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Methotrexate and hydroxychloroquine

Seagulls14 profile image
21 Replies

Are there any bad side effects . Am nervous about choosing either one . I know all medication carries side effects.

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Seagulls14
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21 Replies

Morning Seagulls.

Totally understand your apprehension but unfortunately we have a disease where these kind of drugs are needed. I take methotrexate and have no problems. Where others really struggle with the drug. Hydroxychloroquine is used a lot by people on this site with no side effects but I am severely allergic to it. Often we have to take a combination of drugs until we find the right cocktail so it really is trial and error. You won’t know what will work for YOU until you try.hope this helps any questions somebody will be able to answer on here

HevJ profile image
HevJ in reply to

Hi.

I’ve been on both. Hydroxychloroquine I didn’t get on with. The week I started I felt my eyesight deteriorate on reading (it was quite noticeable) however Dr says that’s more age related, I disagree ! I also suffered many bouts of tinnitus the few Months I was on it . Which when I stopped, I no longer have suffered. On reading about it there are reports re both the issues I had.

Methotrexate at higher levels I suffered badly with nausea. I was put on injectable form and they were fine.

I am now on a Benepali which should be used alongside methotrexate- however this sends my liver into over drive (even at low dosage) so currently off methotrexate.

I was in a bad way before I accepted the meds. I was trying all natural processes but in the end I just said give me the drugs! In my area they go in quite hard to get remission. I am there and I’ve made many changes to my diet as well as decreasing amounts of meds.

I’ve learnt over the years we are all different, there are many meds and you have to try the combos to see what works for you.

It has taken a few years but I do feel I have my life back - pain free. I do get exhausted and go down with any colds and bugs but I can cope with that.

Good luck.

Luna20 profile image
Luna20

I’m on both and i’m fine. Just visit the loo a few time the day after taking methotrexate.

Luna20 profile image
Luna20

Just make sure you have regular blood tests for liver function (every 2 weeks for the first 3 months then every month) when on methotrexate. And you will need a yearly eye exam to test for macular degeneration when on hydroxychloroquine.

helixhelix profile image
helixhelix in reply to Luna20

New guidelines for hydroxy are to have a baseline assessment, and then it can be 5 years before you need a follow up depending your dose. And it causes retinopathy, not macular degeneration. Sorry to be picky, but I think good to be fact based if we can.

Here are the guidelines

rcophth.ac.uk/wp-content/up...

Luna20 profile image
Luna20 in reply to helixhelix

Yes, I have had my baseline assessments for liver, chest and eyes. I got confused about the macular degeneration because the optician told me she was looking for damage to the macular.

Seagulls14 profile image
Seagulls14 in reply to Luna20

Thank you

Seagulls14 profile image
Seagulls14 in reply to helixhelix

Thank you

Hi 😄I’ve been taking both now for nearly 3 years and except for the occasional gut ache everything has been fine. I get my eyes checked by a specialist yearly. All good. So don’t be too worried I also have a blood test every 3 months

Seagulls14 profile image
Seagulls14 in reply to

Thank you

Boxerlady profile image
Boxerlady

Same here - on both since May last year and no real problems. Regular blood tests arranged by clinic (they're very good at monitoring you carefully) and yearly eye tests. I'm on Folic Acid six days a week (not on methotrexate day) which helped with the initial tiredness the day after the methotrexate. Having dropped Hydroxychloroquine dosage for a short time and Methotrexate for a few weeks (nothing to do with problems caused by them) I can attest that they're both working really well for me.

Seagulls14 profile image
Seagulls14 in reply to Boxerlady

Thank you

KittyJ profile image
KittyJ

I’ve been on both for more than 20 years and have no side effects. Medication can cause side effects but lots of people here are on those meds with no problems 🤞🏻 you have none either.

Seagulls14 profile image
Seagulls14 in reply to KittyJ

Thank you

helixhelix profile image
helixhelix

Yes it’s a bit scary having to make a decision to take these drugs. Did your doctor not give you some guidance as they are very different drugs?

All drugs, even aspirin, can have bad and serious side effects and it’s impossible to know in advance. But equally all drugs can work really, really well and give you your normal life back. Here are the two patient leaflets on the drugs for you to read. They have to tell you about everything, so it sounds awful. But the reality is for many people there are no side effects at all. I have been in both with no problems.

medicines.org.uk/emc/produc... Methotrexate

medicines.org.uk/emc/produc.... Hydroxychloroquine

Seagulls14 profile image
Seagulls14 in reply to helixhelix

Thank you

Sar9 profile image
Sar9

I originally started on hydroxychloroquine and found to have no side effects with this medication - unfortunately it stopped working for me after a period of time and I now take methotrexate... if I could go back to hydroxychloroquine and it work then I 100% would as I think that drug is less scary than methotrexate.

I have suffered side effects with methotrexate at various different points such as upset tummy, sickness, ongoing hair thinning, irritated scalp.

It’s hard to make these decisions and I’ve never been able to decide; so I’ve always put the decision back to the consultant as to what he thinks is best.

At the end of the day, everyone is different and has different experiences with different drugs etc.

If I was you, I’d be guided by your rheumatology team, and I’d possibly try the safest and more widely tolerated medication first 🙂 if it doesn’t work for you then you can step it up to something else!

Good luck.

Seagulls14 profile image
Seagulls14

Thank you . My consultant has prescribed me hydroxychloroquine. Hopefully they will work and I won’t suffer side effects .

AgedCrone profile image
AgedCrone in reply to Seagulls14

I think the trick is to approach every drug with the attitude that “this is going to be the one that will work for me”.

It’s no good starting out thinking you are going to suffer what you read someone else experienced.

Being anxious about a new drug is quite normal....but unless you relax & allow it to work the anxiety will overtake any good effects a drug can have.

Make sure you have plenty to do the day you start any news meds ......Then you won’t have time to think about it.

JFlay profile image
JFlay in reply to Seagulls14

I changed to hydroxychloroquine 7 months ago as methotrexate didn't agree with me. It's working well and no problems with it (apart from wind 😬) but I found it quite slow to get going properly. Good luck!

Llanberisman profile image
Llanberisman

I was taken off hydroxy two weeks ago by my consultant, as I was suffering with hearing (mainly tinnitus), subject to an ENT appointment. Continuing on MTX injections and salazopyrin. No noticeable deterioration, but hearing improved as a result. Guess the moral is to report any side effects as they occur.

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