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Hydroxychloroquine experiences please!

33 replies

mineofuselessinformation · 19/09/2016 19:33

I've finally been diagnosed with either inflammatory or palindromic arthritis today (symptoms don't fully fit either, but I think palindromic is more likely having been told about it today - never heard of it before.)
Anyway, I've been prescribed the Hydroxychloroquine (and naproxen) and have a follow-up in three months.
Anyone else taken / taking it?
Thanks

OP posts:
Squirrills · 24/09/2016 22:20

For me the fatigue is by far the worst symptom. I can handle pain and pain killers worked when I couldn't or wanted relief but I never connected the fatigue until I was diagnosed and googled. Didn't even mention it to doctor as I just thought it must be age / menopause. Although I'm massively better on the hydroxy I'm still wary of overdoing things.
Little and often. Takes longer to get things done but reduces the risk of a flare up.

mineofuselessinformation · 24/09/2016 22:43

This is a typical night's sleep...

Hydroxychloroquine experiences please!
OP posts:
Bloopbleep · 25/09/2016 01:13

It was once explained to me by a rheumatologist that I probably had a sleep disorder, that he believed inflammatory arthritis to be due to a sleep disorder because our connective tissue wasn't getting the opportunity to repair due to lack of deep sleep that the body needs to recuperate. He also said that the field of sleep disorders was such a new area of research that they didn't really know anything about it but to expect it to grow huge. That was 2009. I think he's probably onto something. Wish others were looking into this.
I take cocodamol to help with the pain and sleep at night. I get terrible restless legs when I don't. I've had rls since I was a child & nothing else works. The sleep or lack thereof makes such sense.

newpup · 25/09/2016 09:16

It is massively reassuring to hear these stories although obviously sad so many people suffer :-( The fatigue is so debilitating and I hate the idea that I could be perceived as lazy! I am realising now that luckily my diagnosis has been very quick compared to others.
The pain up until now has been manageable but the last two days the pain in my foot is horrendous. It feels red hot to me but is only slightly warm to the touch. I tried taking the Naproxen my GP prescribed but after 48 hours I had stomach pains and diarrhoea Blush on top of the pain it was too much so I stopped taking it. Will see what the Rheumatologist says in two weeks. Hydroxichloriquine looks like a good fit.

daisymai08 · 25/09/2016 09:33

Hi girls

I got diagnosed with RA 2 1/2 years ago. Was in a mess to be honest the fatigue was crippling (although I had no idea) I was put on 20mg methotrexate Hydrox and Sulphasozine. 6 months in felt rough in other ways (methotrexate wiped out a Tuesday). Bumped into a friend who is not seen for ages - she told me she'd changed her diet and had got rid of most of her symptoms and recommended me to an alternative medicine lady.
Felt like I had nothing to lose (apart from £150Shock and the upshot of it was I have taken Wheat dairy Caffeine out of my diet and anything that has acid (cue healthy books Honestly healthy Deliciously Ella all alkaline and people who'd had chronic conditions) 18months into this now and last September went to my Rheumatoid Nurse and got the all clear. I still get the odd tingle if I've been out and had s few too many or been on holiday and not kept to my diet but touch wood apart from that Sympton free and I feel amazing!! Glowing skin, lost a stone (running 10k). Can I recommend you read Gut by Inders - it's all about bacteria in your gut and very crucial links to why we develop these conditions. She's a Dr who was living with a chronic condition also.

Not trying to preach at all I have a friend with RA who just can't bring herself to try the diet (it really is all or nothing) but just so you know there can be a different light at the end of the tunnel.

mineofuselessinformation · 27/09/2016 19:01

Anyone felt woozy when starting hydroxy?
I'm under a huge amount do stress at the moment, so can't tell if it's that or the medication.

OP posts:
Squirrills · 27/09/2016 21:51

Not woozy but the one good side effect was improved sleep quality.
I have terrible sleep. I normally fall asleep for an hour or two then wake /sleep all night often 4 or 5 times. Sometimes awake for 3 hours. When I started the hydroxy I still woke a couple of times, briefly, for the loo but otherwise slept 9 hours a night Grin.
Sadly it wore off, but for a few months I slept better than I had for 20 years.

Bloopbleep · 04/10/2016 10:41

I can get woozie when I take mine if I've not eaten anything carby. I've been given a different brand this month and the nausea has been worse. Says quinoric (sp?) on the label.

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