hydroxychloroquine & leg pain: Hi all, been on... - LUPUS UK


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hydroxychloroquine & leg pain

Dani83 profile image

Hi all, been on hydroxychloroquine for nearly 3 weeks. Ive got pain on my left thigh. Ive not done anything to my leg that i know of. Can this drug cause this pain? I spoke to the doctor & chemists they said no. But the pain only started few days after taking these tablets. It hurts more of an evening. & when im sitting. Just wondered if anyone else had this

25 Replies

Hi dani83

Ive had the pain you are describing for abt three yrs. I took it that it's part n parcel of aps n sle.

Who'll be interested to know what others think.

Regards Diane

Hi Dani 83, it's funny you should say this I posted only a week ago that suddenly me legs began to swell of an evening and feel tight and I've been on hydroxchlorquine 8 weeks. I've never had these symptoms previously .I was sent to A+E to rule out blood clots everything is fine . I wonder if it is connected to the drug .

My legs sorry ,typo error.

I've been on hydroxy for about 3 years or so now. And only just for the last few weeks had serious cramping and tightness is my calf muscles, primarily at night. I get it on and off but had it before I went on hydroxy too. It gets so bad I've been taking codeine to get to sleep. I'm currently in a flare though so I took it as part of the SLE symptoms.

Roanna profile image
Roanna in reply to SLC03

I've had flares similar to this throughout the 20 years I've been on this med, I think it was just a flare, some times the joint flared would stay swollen for a few years and sometimes only a week, my ankle was swollen for 2 years then one day it was gone. My pointing finger did the same although I never did experience leg pain and no other area was involved.

The only problem I've had on hydroxy is stomach problems and that has stopped. I took it with an antibiotic recently and stomach problems were bad.

I have been on hydroxy for about 3 months ; my rhuemy said it would help ease the pain in my calves - it has to some extent.

Hi all thank you. Its strange as it hurts more of an evening. Ive tried resting. Heat & ice. Think il have to try get hold of the rheumatologist. Oh the joys of being ill x

Hi Dani83, if the pain is on the side of your thigh but below the pelvis it could be the Tendons they are painful. Press on the area side of thigh and if it feels bruised that's what it could be. I think its a coincidence, I have had pain in both sides for a number of years, I came off the Hydroxy for a year to see if I could go without it but just started again as couldn't cope but this time around I have had terrible stomach pains all the time, seen my GP and going for a scan just to check. I have been treated for Tendon damage unfortunately there is no cure as it is part of the condition, but the specialist who injected mine said sleep with a pillow between your legs from your crotch down as far a you can with the pillow it take the stretch off the hip area, I have done it for three years and you get use to it, a pain when turning over through as can't sleep very long on either side due to the pain.

To SLC03 try a small glass of tonic water before bed it helps with the cramp at night and also helps you to burp as some Lupus sufferers also have Gastric reflux.

Most of us are on the brand QUINORIC which I think has more side affects than the PLAQUENIL which I first started on as we were told this was discontinued but with the help from a fellow sufferer Gizmo she posted a link that says you can now ask for this drug to be prescribed but in a different name but same formulation. Try this link and print and take to your GP. lupusuk.org.uk/plaquenil-av...

Try it if not just look on the Lupus org site. Take care all. Nx

madhead profile image
madhead in reply to noonoo52

I have had similar problems, top of both my thighs felt bruised and hurt when i walked a lot and legs aches all the way down. I think there is a link to Quinoric as i was on Plaquenil previously. I have had two episodes of this and the last episode happened when my skin flared up. I'm happy to say that it has gone.

Hope you find some answers.

Roanna profile image
Roanna in reply to madhead

While I was on Plaquinel many years ago, I started getting leg pain on both thighs, and down towards ,ankles, it felt like it was aching and started to burn, I went 2 times to my specialists who also told me he didn't think I could be allergic to Plaquinel, but any how as time went on and the pain grew worse, I started to get a rash, which turned into ulcers, I went into a walk in clinic who diagnosed me with lupus nodosum, he gave me some Naproxen and with-in a week it had vanished. It may not be what the pain in but it is worth looking into as both my specialist and main GP couldn't diagnose it until the ulcers started to appear. I was so happy to go into that walk-in clinic, I know I wasn't imagining the pain. good luck

Dani83 profile image
Dani83 in reply to noonoo52

Brilliant thank you for that. I will definitely have a look at that link. I do the pillow trick its quite comfy. Thanks so much xx

I have alot of thigh pain and upper arm pain too! I have been on hydroxychloroquine for years. My new Rheum doctor adjusted my dose from 400 mg to 300 mg. based on my weight. A few weeks later I developed a lot of pain in different areas. I called and my dose is back to 400 mg which has eased the pain in all but the thighs. This pain I am living with till my next appt.. So (I think) this med is not the problem unless you need a dosage adjustment. My son(deceased) had dermatomyositis and the myositis is also a symptom in mixed connective tissue so I just live with it. She said she could add prednisone to the regimen but I already take enough pills and I am trying to wait this out and see. Maybe your weight to mg ratio is needing adjustment, otherwise I am not sure. I had been getting alot of charley horses at night and was sleep deprived but I take potassium at bedtime to relieve this. Do you take your hydroxychloroquine in one dose or twice a day? Maybe take it twice a day or one dose in evening????

Dani83 profile image
Dani83 in reply to Carebearboo

Hi thank you so much. Im waiting to hear back from the rheumatologist. I take it of an evening Maybe they will adjust the dose x

I've been in hydroxychloroquine ( it's still listed as Plaquenil here..I think?), for 15 years and the overwhelming side effect that I assume is causing it, is a peripheral neuropathy manifested as 'hot needles' pinging my skin; my daughter ceased taking it because of this unpleasant symptom. Or is it a lupus thing 😁 ???

What I do believe is a symptom of lupus, is the muscle, tendon, joint pain of which you, Dani83 are suffering.

I would say to you to stay on the medication and see if you can identify which body part is responsible for your pain.

All the best 🎀

Dani83 profile image
Dani83 in reply to Penelope-Mary

Thank you. X

Hi, I've been on it for about 5 years, and have had no problems. I am aware that meds effects us ałl in different ways

Hi, me again so i posted 5 days ago about leg pain. The pain has become unbearable. My husband took me to a&e as i couldnt sit or lay down (Left thigh). It was throbbing. Co-codamel didn't help with pain. Hospital did a D-Dimer blood test that came back as possible dvt. So gave me clexane injection. (Had scan today no signs of dvt). I said pain has calmed down since clexane injection. Nurse said there is no way on earth this would have helped the pain. The nurse did say my leg is swollen. Spoke to rheumatologist she said I should try put up with the pain because these are the best tablets for me. I said the pain is unbearable tho & i cant sit or lay down. She didnt have a response. Help! :(

Hi Dani, you poor sole. If you can't sit down could you have Sciatica as relief is when walking, sitting down and laying down is extremely painful, trapped nerve maybe in the spine. Have you tried Googling the symptoms. Lymes disease have you had a deer tick bite at all (not sure where you are in the world) How can a Rheumatologist say basically live with it. The other thing I Already mentioned when you posted before could it be your Tendon top of thigh if it has a tear it's very painful. I did know someone with Sciatica and he could not sit, lay the only thing he could do was walk everywhere as he couldn't get in a car. He took Diazapam, just wonder if you could ask your GP for some Morphine liquid. Please keep me posted, love Nx

Dani83 profile image
Dani83 in reply to noonoo52

Aw thank you. Im in london. England. It just feels like 1 thing after another. Hopefuly seeing a chiropractor this wekend. Its at the back of my thigh. Top of thigh feels fine. Im not going to go back on the tablets until i no what the pain is. ive got doctors tomorrow & waiting for rheumatologist to get back to me. X

Yes I do wonder if you might have a pinched nerve in the spine: sciatica . A swollen leg typically could have been a DVT, and could be missed on a scan. Clexane is a blood thinner that works once and wears off, maybe the clot did dissolve quickly? It's horrid that your rheumatologist seems to have cast you adrift.

Stay strong 💐

Hi thank you, thats what 1 doctor said could have disolved quickly. I no every doctor has a diferent opinion xx

Hi Dani, please let us know how you went at the doctors. If at back of thigh I can understand why they said it could be a DVT did they use a doplar (think that's how you spell it) when they scanned you or did they do a Veinagram (again can't spell it) keep on at the doctors and the Rheumy until you get answers, don't just take what they say push and even be a bit outspoken as there has to be a reason for the pain, as its in an isolated place. I am in the South of England, we have sufferers from all over the world on this forum which is fantastic. Keep posting everyone it's what keeps us all going because these are the only people who know what we are going through, no one else does. Take care Nx

Dani83 profile image
Dani83 in reply to noonoo52

Hi aww they did a ultrasound thing. The doctor said its very odd. Rhumy said wait til the pain in leg totally goes. Then try them again. Im going to my reflexologist next week going to get her to give me an MOT on me feet lol. This site is brilliant. Im glad i have somewhere to let it all out. Xx

Well said, great to talk to others. let me know if reflexology helps, I see my healer once a week, twice next week as down with migraine this week. When I missed I did notice more discomfort in my tendons, I know it helps will continue going as he treated my gallstones and carpal tunnel and no longer need ops. I would try anything, thought about acupuncture for this but not sure, has anyone tried it with any success. Have as good as weekend as you all can. Nx

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