on to injecting methotrexate and adding hydroxychloroquine

[K2013]

Hi . 6 months in after diagnosis of seropositive RA . Had f2f with rheumatologist. Sulphasalazine failed so have stopped. Methotrexate working, to a fashion. On 20mg so going onto injecting methotrexate weekly and adding in hydroxychloroquine. I’ve read the hydroxy boosts methotrexate, as does changing to injectable. Does that mean the side effects I currently get with methotrexate will get worse? I am flu like for a day after just now but it’s liveable. Any experience welcome 😁

[Flowersaregreat]

My experience of these... I started on hydroxychloroquine as my first DMARD (May 2019). I didn't have any side effects but it only made a very slight improvement. Next added Mtx tablets (March 2020), helped greatly. This is on top of the hydroxychloroquine. At that point I had about 9 months of fairly low disease activity and a few dose increases before things declined further. I switched to injecting mtx (February 2021) which has enabled me to get the dose up higher. I used to get nausea but I don't now. It's not a very scientific experiment in so far as I'm on various other medications for other things and these have also changed types and doses too for unrelated reasons so it is hard to know for sure. I also noticed a pattern with which days of the week I felt worst when I was on oral mtx whereas now I inject everyday feels the same. It was not the reason I switched but it's a bonus. I recently started adalimumab-idacio (April 2022) on top of the other ones as my arthritis isn't under control. So to summarize, I much prefer injecting mtx as no stomach side effects, no nausea, no variation throughout week. Hydroxychloroquine I find nothing to make me want to stop taking it but at the start when it was my only DMARD I didn't feel much benefit either.

I tend to think of these medications as like the Spice Girls - greater than the sum of their parts. Let's face it, none of the solo albums were any good at all, yet the Spice Girls all together were amazing! Or at least that's my theory. My joints are terrible right now 🙃

[K2013 in reply to Flowersaregreat]

🤣love it. In 6 months my disease activity has gone from severe to moderately severe and is still deemed to be active. Thinking I’ll probably have to have another round of steroids which I don’t really want to do as it will be my third round this year but hey ho. I don’t feel any difference from the steroid injection at all. Just hate the slow pace of the meds- MUST learn patience. 🤣

[CagneysMum]

Understand your concerns but that didn’t happen when I switched. Similar story to others here … started on hydroxychloroquin just over 3yrs ago when I had a fully body flare up (some improvement with the hydroxy but not much) …. Added in methotrexate after 3 months and slowly increased to max dose with folic acid (better result but not great and very nauseous) …. switched to 20mg metrojet pen after a further 6 months (better, less nauseous but still had painful ankles and knees) ….. added in Adalimumab/biologic after 5 months or so ….. worked like magic and is still fab 14 months on …. So I reduced my methotrexate to 15mg 5 months ago and still good 👍👍👍 It’s a learning journey, don’t be scared.

As Flowersaregreat said … have considered stopping hydroxy altogether but worried the Spice Girls might not work so well as a duet 😆😆

[Sms94]

How long have you been on sulfasalazine?

[K2013 in reply to Sms94]

Was on it 3-4 months. Gradually increased to full dose but had to cut back then try again. Lots stomach issues, made my tinnitus worse and I think it affected my mood too. Side effects outweighed any benefit.

[Leics]

I’ve just started mtx injections again and I found I got a mtx hangover the day after injection. Five weeks in and hangover starts at lunchtime but I usually have to have a sleep in the afternoon to give in to it. The hangover is getting much better used to last all day but now only a few hours so I’m hoping as my body gets used to it the side effects will diminish. In my opinion one day of fatigue if something is helping is a small price to pay especially as it seems to getting better.

[oldtimer2]

For some people the methotrexate 'hangover' improves, for others it never does. I didn't find taking hydroxychloroquine made much difference to the awfulness...and eventually gave up on methotrexate and changed to azathioprine (I'd tried all the other DMARDs by then).

[Peacox]

Hi there, I've been injecting MTX (combined with Hydroxy) for about 18 weeks now, I'm also seropositive RA. I was on hydroxy for about ten years and I went into remission, BUT THEN, I had an ovarian cyst and had to have the ovary removed and my RA went nuts. I tried leflunamide which I had a terrible reaction to and stopped immediately, then Sulfasalazine but it didn't work and gave me terrible vertigo and made my tinnitus go bonkers. Now with injecting the MTX along with my hydroxy I get very sick & stupidly tired the day after my injection (the worst hangover you've ever had feeling), so much so that I can't work or even function really & sadly I do now have nausea and headaches on a pretty regular basis from it, kind of randomly throughout the week (I never had these before so it's upsetting). I also find I'm dehydrated ALL the time. I can't say I'm enjoying it, I'm afraid. And there's only marginal improvement. I mean, at least I can walk now (so that's actually a big thing), but my hands are still a mess etc. But everyone is different. You can never tell how it will be, I've found. Good luck with it!

[Boxerlady]

I started on Hydroxychloroquin and Methotrexate tablets and eventually moved onto to Methotrexate injections to get more into my system and added Sulphasalzine. I'm on 20mg Methotrexate and do get the hangover the day after but it's manageable and better than the joint pain and swelling I had previously. I was on 25mg at one point (before Sulphasalzine) but the hangover was lasting longer each week and there didn't seem to be any benefit so I asked to drop back down to 20mg.

Initially Hydroxychloroquin was described to me as an "enabler" to help the Methotrexate to be more effective and on the two occasions that I've been asked to try reducing my Hydroxychloroquin, my joints have complained so it's been increased again so it seems that it's definitely doing something.

[AgedCrone]

You’ve got to look at it this way…. when you change your medication … whether the type or the dose…anything can happen ….and over many many years I have learned to be positive & tell myself “this is really going to work”.The combination you are going on is often prescribed very successfully & often your Mtx dose is reduced when you change to injections.

So try not to analyse things too much…& definitely don’t think because something unpleasant happens to other people…it will happen to you.I think you need to give any changes at least three months to settle in- unless of course the side effects are completely unacceptable….

So stay positive…keep your rheumy nurse in the picture if you feel things aren’t quite right……don’t forget to check you are on the right dose of Folic Acid….that really does help. I do hope in a few months you can say how successful the meds are for you.

[K2013]

Thanks. No rheumy nurse, have to go through gp but I have a very good dr and I think Rheumatology have been on the ball- my bloods and symptoms were so bad I was easy to diagnose. I’ve had 2 f2f and one call in 8 months so can’t complain. Thinking Realistically the methotrexate has def helped, the swelling has drastically improved (no more compression gloves required) and although joints are still painful, I haven’t had the shooting pains I had. I was put straight onto 6 days folic acid from the beginning so side effects are liveable. Unfortunately my job is in science so I tend to analyse and research everything 🤣🤦‍♀️ Though if what you read doesn’t make you feel better- stop reading 🤣

[AgedCrone in reply to K2013]

From the Johns Hopkins site……

Q: How does hydroxychloroquine help autoimmune disease?

A: Rather than suppressing the whole immune system, the drug appears to work by stopping immune proteins called autoantibodies from triggering the immune response that causes these diseases……..

[smilelines]

I have never read that side effects are increased from methotrexate by adding hydrochloquine.

[K2013]

Good to hear , thank you 👍