Hydroxychloroquine side effects : Hodroxy started 1... - NRAS

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Hydroxychloroquine side effects

Mittagating profile image
27 Replies

Hodroxy started 14 days ago. Anyone else suffer sudden depression and nightmares?

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Mittagating profile image
Mittagating
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27 Replies

I just got taken off it, making me nauseous all week on top of methotrexate and causing sleep issues, awake all night. I emailed advice line with details and got given appt. I know a lot of people tolerate it well tho'.

Mittagating profile image
Mittagating in reply to

You have an advice line you can email! Wow!

in reply to Mittagating

I thought everyone did, sorry. I'm south coast, it's called patient advice and info line. You can phone or email any concerns about meds/disease. It's not emergency but they do get back to you in 24 to 48 hours. Got given details by specialist nurse on first appt.

Doughnut61 profile image
Doughnut61

Made me have upset stomach so they halved the dose now I’m fine x I couldn’t tolerate MTX effected my liver! So now on Sulfalazerine and coping quite well x

Natalie-Lhianne profile image
Natalie-Lhianne

I was unwell on it, upset stomach and began itching. Your symptoms sound awful, have you got a rheumatologist advice line you can ring to advise them?

Mittagating profile image
Mittagating in reply to Natalie-Lhianne

Advice line is one hour Monday to Friday - I’m too late and probably wouldn’t have got through! I’m going to ditch it I think. I was feeling ok before I started it. I know it won’t have kicked in but the mood swing is too severe to keep going even with my crp up. And depression and fatigue isn’t usually a feature of my RA. Thx for feedback.

Natalie-Lhianne profile image
Natalie-Lhianne in reply to Mittagating

Yeh I don’t think it is worth persevering if you feel so unwell. I’d definitely follow up with your rheumatology team though.

I was advised to stop taking them straight away after keeping up with them and the side effects for 3 weeks.

Hope you feel better soon.

I had rash when i started it too, forgotten that. Put up with it 3 months,taken off today, almost vertigo like feeling plus week long nausea. Just got to put up with mtx side effects now, but at least not all week and maybe they ll improve.

Tinkerbell5 profile image
Tinkerbell5

Was making me sick with migraines I stopped taking it x

wishbone profile image
wishbone

Can't say I get depressed, but I do have very vivid, often quite bizarre dreams/nightmares. I assumed they were tramadol induced, but I've been on hydroxy for around the same length of time so suppose they could be due to that. No side effects otherwise.

Jesnaskah profile image
Jesnaskah

I was off of hydroxychloroquine in 2.5 weeks, neuropathy started kicking in and I wasn't having it!

I wouldn't doubt the things you are experiencing are from this med. I had read not to long ago of a person who was on Sulfasalazine and it made her completely suicidal, not jokingly. Even though she felt better pain-wise, she still didn't see the point of going on and so she was taken off asap.

I know at least 3 different women who refuse to take birth control because it makes them an entirely different person... So

I have no doubt these drugs can change mood or cause depression, all these drugs have the potential to change our chemical makeup. It's just amazing how different we all are, and some of us get along fine on them!

Mittagating profile image
Mittagating

I have stopped! I feel almost guilty that I haven’t given it much chance. But not worth it. Hope I can find something I can tolerate along with sulfasalazine, which doesn’t seem to be holding the RA anymore. Thx

LadyJan profile image
LadyJan

Oh yes yes yes....weird dreams and then no sleep. Even now 6months on my nights are not good. It also makes e have a runny and dirty nose all the time (common) which is annoying. I hate it and don't think it helps much but who am I to say. Seeing rheumy next month so will mention these side effects. Stick with it....I take a paracetamol before bed in effort to sleep deeper. Ladyjan

wishbone profile image
wishbone in reply to LadyJan

Are you saying your runny/dirty nose is due to hydroxy? I also suffer the same with my nose but thought it because I'm getting old and crusty.

LadyJan profile image
LadyJan in reply to wishbone

Yes, no problem before. Always (to be crude) had the need to pick my nose to rid of crust. I am 74 and not an old lady if you know what I mean. It's annoying to say the least. I have reduced my 200mg daily to alt days but does not help. Tempted to try coming off for a while to see results.

Ladyjan

Sjhoney profile image
Sjhoney

Hi, hydroxichloroquine is my third med after methotrexate and sulphasalazine giving me extreme psychological side effects. I’m taking half the suggested dose as my pain is not too bad. My heart seems to race a bit at times but I’m not feeling anxious which is a plus. I’ve only been on it 2wks so will wait and see how it goes, I’m hopeful but then I’m always hopeful! If it’s making you feel awful I’d come off it, not worth it 😕

Ruth12345 profile image
Ruth12345

I am feeling weepy often these days and have put it down to external things that are going on. Have been on hydoxy for about 8 weeks so maybe its that. Thanks for highlighting this. Not sure what to do about it tho. Hope all clears for you asap

Mittagating profile image
Mittagating in reply to Ruth12345

I think it was really obvious for me as I am in a good/exciting place, about to move back to old friends, old haunts, near to my daughter. After losing my husband 2013 I have been treading water and it’s time to make a move; all very positive so felt hit by a truck when my mood plummeted. Relieved already having decided not to take tablet this morning though mood low when I woke up.

Ruth12345 profile image
Ruth12345

Thats great news to hear you in an exciting place. Such an adventure for you. Glad you dropped the meds and gone with your gut feeling. I wish you a wonderful time especially after such a difficult one. Pacing the name of the game. Look forward to hearing how your move has gone. Take care. ☺

Mittagating profile image
Mittagating in reply to Ruth12345

Thank you. Hoping you get some positives soon.

Ruth12345 profile image
Ruth12345

Thanks. It will all be fine one way or another. I have learnt this over the years but have to work at this silly weeping as its nonsense. Take care

Allipat profile image
Allipat

I have been really happy with it. It has helped my sleep, it did upset my tummy but I have started on a gastro type thing that is helping. It is working on a bit of my fibro pain too, which is good as I am coming off Cymbalta that has stopped working after 2 years, well except to make me sweat. I've just finished my first 6 weeks and my rheumatologist said it will hit full strength in the next month.

Mmrr profile image
Mmrr

Hi, I had nightmares on hydroxychloroquine too. They only lasted a few weeks then settled, but I did go deaf, hearing returning after 24 hrs off the drug.

Mittagating profile image
Mittagating in reply to Mmrr

Thx for response and welcome. I’m still working through the various drugs! Sulfasalazine was working well for me but no longer, my problems are simpler, ‘just’ RA and neck arthritis which may be osteo. I’m realising from this forum how many drugs there are! I had a couple of minutes with ears going funny too - didn’t associate it with the hydroxychloroquine.....

Peep44 profile image
Peep44

Had hydroxychloroquine and after 4 months of worsening itchiness I had to stop. Sulphasalazine just made me so sick I stopped after 3 weeks. I have been on Methotrexate for 3 months. It has been ok, but my hair won't stop falling out. I am worried that it won't stop! Trying to work out which menus next on the list. I'm wondering if it's leflunomnide.

Mittagating profile image
Mittagating in reply to Peep44

Leflunomide was mentioned to me, then they put me on the hydroxychloroquine! Maybe next time which will be after I’ve moved region - three weeks! Can’t wait, hoping for better monitoring.

Peep44 profile image
Peep44 in reply to Mittagating

Hydroxychloroquine was a miracle drug for me. No side effects and took my inflammation CRP down to 8 (5 and under being normal.) It was a success, until my itching got worse and worse and I realized it was the hydroxychloroquine. It felt like the end of the world having to start all over again. On methotrexate I feel sick and off colour for a couple of day a week and my hair is falling out all over the place. Leflumonide may be slightly worse than the Methotrexate. I've read somewhere that it stays in your body for months after you stop it

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