Hydroxychloroquine and fibromyalgia: I have... - NRAS

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Hydroxychloroquine and fibromyalgia

VeronicaF profile image
8 Replies

I have fibromyalgia and RA and noticed Hydroxychloroquine effects muscles, so is it going to cause the fibr worse? Thank you

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VeronicaF profile image
VeronicaF
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8 Replies
Shalf profile image
Shalf

Hi Veronica, I also have RA and Fibromyalgia. Horrible!! I'm not on Hydroxychloroquine anymore but not because of anything to do with muscles. I was taken off it when I started biologics. I can't recall having much side effects with hydroxy. The best thing for Fibro and muscles is exercise. Stretching and resistance training. You must first though see a physical trainer, your doctor and maybe a physio before pursuing such exercises. It's important to try and keep muscles toned to support joints. Try walking through water in swimming pool for now if you can. I'm currently getting sharp stabbing pains through my thighs and hips. GP said it was Fibro but didn't do any tests so I am going back to see a different GP because I'm not accepting that. I won't take any risks no.more! Take care. Xx

helixhelix profile image
helixhelix

Hi there. Have you not started the hydroxy yet? As it's quite a while now that you have been standing on the diving board...? Have you thought about talking to your GP about some sessions of CBT (cognitive behavioural therapy) or similar to discuss your anxieties about the drugs? As this does seem to be stressimg you out. Which is not good for the RA!

Agree with shalf, i had no negative effects from hydroxy and exercise is the thing for fibro.

VeronicaF profile image
VeronicaF in reply tohelixhelix

I have been on the diving board for a while, I have an eye test this Friday and I have been trying to get the Z band not the Q brand

I am looking into flu jab, do I have to have that? then I will take them :O)

helixhelix profile image
helixhelix in reply toVeronicaF

You don't have to have the flu jab as hydroxy is not an immunosuppressant. So it's your choice whether you want to or not.

Fruitandnutcase profile image
Fruitandnutcase

I have both fibro and inflammatory arthritis. Take 200mcg of hydroxychloroquine every day so it’s not a huge dose. My fibro was massively improved with the steroids I took for three months before I started hydroxy and it hasn’t been as bad since.

Shalf is spot on, exercises and stretching are what is needed to keep your muscles feeling good. I definitely don’t feel hydroxy has caused me any more aches and pains. I don’t want to take a flu jab, I’ve never taken up the offer. I don’t know why you don’t take your hydroxy if it’s been prescribed.

If you do decide to start the hydroxy ask your optician about an Amsler chart - you can download one - learn what to check for and have regular eye tests. I pay for and have a scan of my eyes taken every year before I go to see my rheumatologist.

If you start hydroxy and don’t feel you are getting benefits then stop it but if you don’t ever start you won’t know if it will make you feel better.

VeronicaF profile image
VeronicaF in reply toFruitandnutcase

thanks guys, ahh that's good re flu jab as don't fancy having it, it didn't do me good last year came down with RA first time I have ever had it, fruitandnutcase, can you tell me how your hair is on it??

I am going to have it but just wondering

Fruitandnutcase profile image
Fruitandnutcase in reply toVeronicaF

My hair is ok. I developed Graves Disease in 2012 and I’m in remission now. I became under active for a while during my treatment and my hair fell out like mad. Once my thyroid was sorted the hair loss stopped.

It is not as thick as it was before I developed Graves, it looks thick but I know it is thinner than it was pre Graves treatment. It is long, a good bit below shoulder length and looks in good condition.

I wouldn’t say it’s been affected by the hydroxychloroquine at all though.

I always take high strength vitamin C (1000mcg ) and vitamin D and K2 combined every day, don’t know if that helps but I think it does and I either bathe in magnesium flakes or use a magnesium body cream. The cream is only 70% strength, the gel is 100%, it’s good too but I find it a bit sticky and it makes my skin tingle a bit.

I noticed you we’re talking about age in one of your other posts - I’m 70 next month which I think adds to my general creakiness.

lala1958 profile image
lala1958

Hi there

The light exercise will help the fibro for sure.

I go to the pool 3-6x per week and has been a miracle for me. As I’m just walking around in deep or shallow water with water weights and talking to others at the same time. It changes my mood and keep mobile so it’s a godsend. I was on the hydroxychloroquine and had to get my eyes checked every 6 months so that’s the only thing I had to watch for.

I’m now on a biologic called Rituxan which is great but I had a side effect of rapid weight gain about 35 lbs.

So i am going to Rheumatoid doc and going to ask him to put me on something else that does not cause weight gain for me Like Arava. I need to lose the weight for these old joints of mine as it’s not good to be in a drug that makes you gain weight when it’s just going to hurt more in the long run.

This RA journey is trial and error it’s been 9 years but I am my own advocate so I feel like I have more control over my body and I keep trying new things to mitigate the pain so I’m not on the couch depressed. It’s the only way I can feel positive.

I had a Battle Creek moisture heating pad which I use every day and it broke in August after 3 years. I was in so much pain that I was in a crappy place mentally due to the pain. Something was heaven sent because I was on Amazon getting ready to buy another one and saw an advert for a Healthy Line Mat. So I called the company directly to see if I could get a better price and spoke to a girl that said she had fibromyalgia and melanoma and the fibro went away by using the mat and the melanoma has not come back after her treatment for it. Now I cannot say if she was embellishing the product or being honest but I have to believe she was being honest as I have had nothing but great results from this mat. It’s expensive. Mine was 30 inches by 24 inches and has crushed tourmaline jade and amethyst in it. Also the infrared rays like the sauna and negative ions and a couple of other things in it.

II was 565.00 Cdn but they have them for 250.00 Cdn a smaller version. They even have ones that can fit the mattress.

The only thing is that for some people on this site it would need the international plug or maybe they have them converted for The UK electricity. I’m not sure but this is the most powerful thing I have done for myself besides the light swimming in the pool. Hope this helps. Cheers

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