I took Plaquenil for Sjogren's Syndrome. It got so I couldn't walk up a curb without help before I switched to oral Methotrexate. My peripheral neuropathy actually went away too, and my rheumy thinks it was a rare, toxic side-effect of the Plaquenil. Has anyone else had that happen?
Hydroxychloroquine - thigh muscle weakness?
Question posted by sjsrdh49 on 25 June 2013
Last updated on 15 August 2021 by Happy4now
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12 Answers
I’m not sure if you’ve tried Plaquenil instead the generic because of the cost. I was not able to take the generic, it gave me terrible stomach aches.
Plaquenil is very expensive for sure but it’s worth a try. When given the right dosage, it really does provide a lot of relief of pain etc from Sjogrens… hopefully without side affects.
Best Regards.
I have taken Plaquenil for Systemic Lupus for 30 yrs. I became blind in my left eye from a blood clot so taking care of my right eye was imperative . Plaquenil caused irreparable retinal damage as well as increased my pressures. It did however reduced my symptoms of 70%. It also caused me to fall very frequently.
What med are you taking now since you aren’t taking plaquenil ?
Sulfasalazine
Hi - now that you mention it, I think I had that issue also. I was put on it for suspected PMR. I was on it for 5 months, and it did nothing to allow me to reduce my steroid dose. But what I did notice was my right thigh muscle (the left to a lesser extent) hurt like crazy when I walked up stairs. I thought it was from the PMR, but my new rheumy took me off of that and put me on a different med. I have been off the plaquenil for 1 month and I have no more pain in my thigh when I go up stairs.
I also have PMR and have been on steroids for 16 months . I have had muscle weakness in my quads walking up stairs and the dr thought it was from steroids. I started Plaquenil 4 weeks ago and now I have muscle weakness and pain, not on.y in my quads, but in my calves and biceps. Is it the Plaquenil? Will call dr . Not sure what is going on.
I can't believe I am reading this. I have PMR, but to get me to try to taper steroids, the rheum started me on generic Plaquenil. My right thigh muscle hurts, and walking up stairs is an issue - I can do it, but it hurts. I am trying to think back to if this was an issue when I was not on the Plaquenil - I have been on it for 4-5 months now, so it's hard to remember. I'm seeing rheum again in a couple of weeks and will ask about this. Thank you so much for this info. If I decide to cut back on it after talking to rheum, I will return here with an update. I fully understand that it could be pain associated with PMR, but I can tell you for sure I didn't have this pain when PMR first showed up. That pain was in my hips, shoulders, neck, and knee joints, but never in my thigh muscle.
Hi
I was very fit and active, a keep fit enthusiast until two years when I became unwell suddenly with breathlessness, chest pain, severe myalgia and pain in hands. Investigated in the acute admissions unit, diagnosed SLE.
Treatment with hydroxychlorquin 2oo mg twice daily was commenced, and continue to remain on it.
In the last 6 months I have suffered immensely with pain in my right leg and calf and more recently in my left leg. I get cramps and I have no energy to walk. I cannot climb stairs, i have to pull myself up holding on to the railings. When bad i am on my fours like a baby.
I was prescribed Methotrexate today. When I asked my Rheumy advised me to continue with hydroxychloroquine.
I have had enough. I am stopping this medication today.
I have taken this decision after the very helpful comments made by people like me who have suffered in the past
This is indeed a very valuable site
Hi. I have been on plaquenil for about 3 years now. I walk my dogs 4 miles a day and have always been active. For the past year, My legs have become progressively weak and tired all the time. It is difficult to climb one flight of stairs let alone a small hill. My PCP ruled out a vascular problem and said it is probably the plaquenil. My rheumatologist said it wasn’t the plaquenil but after doing my own research, I think I am going to stop it. I am on it for a mixed connective tissue disease. I think I felt better off it. I am of normal weight and active. No other medical problems but my legs feel like they are 30 years older than the rest of me!
I started taking this on 10/28/16 and have experienced every single side effect listed treatment was for autoimmune suppression. sjogrens syndrome, fibromyalgia and raynauds flare up. I was hospitalized for a week bc I suffered terrible muscle atrophy and weakness and couldn't stand up without collapsing I hit rock bottom on 11/1 and was hospitalized for one week three days ago i crashed and burned also went down 7 pounds since taking it and am 5'6" and now weigh 105 pounds. I called my dr on Saturday, 11/26/16 advised my doctor that I was feeling horrible,weak legs were terribly painful and he ignored my concerns. I have stopped taking it now two days and am starting to feel better. I still have terrible blurred vision, buzzing in the ears and of course still weak due to severe muscle atrophy and weight loss but so much better. Get off this stuff!! Its not good
I was taking hydroxychloroquine up until three days ago for RA treatment. I was unable to get in contact with my Rheumy. but after viewing the side effects in more dept I've stopped taking it. Hopefully, my dr. will call me back soon. hydroxychloroquine is the generic form of Plaquenil but the side effects are the same. My thigh muscles are so sore I can hardly walk, sit or stand. Stairs are a TRUE challenge... I have to struggle up and down taking only one step at a time using only one leg at a time.. kind of like a two year old would walk up and down the stairs.
During the day I exhaust so much energy just trying to walk that by night fall (bed time) I can hardly move. I have to sleep in one spot because turning from front to back takes so much energy I'd end in tears before flipping over. this medication is doing more damage than good. Fingers and wrist are practically useless when it comes to using them for strength. opening a bottle of water renders a REAL challenge.
I don't know how long it takes to get out my system but I've discontinued use of the Hydroxychloroquine and now am taking Ibuprofen (2400mg daily prescribed) to mask the pain and muscle fatigue until I hear back from my rheumy.
Long story short... you are not alone!
So sorry you, too, are experiencing this condition. I have polymyositis and it is very similar to what you are dealing with.
My only comment, since the Rheumy has responded yet, is that you be very careful with daily ibuprofen at that maximum rate. You can experience stomach bleeding. My husband did, very healthy guy except for curvature of the spine, and had a spontaneous bleeding ulcer. He lost a large amount of blood in a very short time, about four hours. If you notice anything like blood, vomiting for no reason, get in right away to an ER to be checked.
The Rheumy should be checking your ck levels to see the level of muscle damage. You may be given a dose of prednisone to reduce the painful inflammation. Just go with it. You will not mind side effects in comparison to the leg and muscle pain. It will leave quicker than an NSAID can treat.
Stay well, karen
I am experiencing the same thing and have been on it a wk. The burning pain in the back of my thighs hurts so bad I put a heating pad on it. I think it is worse after it starts to leave the system before my next dose. I have climbed so many mountains and I feel I can't even get up stairs. I am taking it for autoimmune urticaria hives, so felt that the alternative would be to go back on 4 antihistamines until I hear from my doctor. did anyone feel their mood slipping downward with this med?\
My husband took me off the Hydroxychloroquine... yes my husband.. I was practically crippled and with the medication today there has got to be other treatments was his response. I finally got in to see my Rheumy after being off all medication for about two weeks..(not good for my condition but it got me in the dr faster) Rheumy told me that muscle fatigue is rare with Hydroxychloroquine but that's definitely what I had. Gave me a cortisone shot, took me off IB and changed my prescription.
Anyways, I'm on Methotrexate now and I am really loving it right now. I began seeing stabilization around Oct 2013. as of today everything has cleared but my right wrist. I believe I've developed carpel tunnel from the RA but I wont know until this upcoming visit when the Dr review my xrays.
In short, sometimes you have to be your own DR. My Rheumy told me that the muscle. Thanks for all the advice.^^ I appreciate it
Hi, although Plaquenil is prescribed for autoimmune diseases, such as yours, it can actually add to/increase the number of the symptoms. Muscle damage and (leg) pain being just 2 examples. It is great that you have responded so well to the new medication. I haven't taken either of these medications, but it thought it may help to know that the symptoms you experienced are common, so the discontinuation of Plaquenil could indeed improve these areas. Hopefully you will hear from someone who you can identify with : )
Hello. Muscle weakness is one of the side effects. Fatigue is part of malaria, which is the normal use of this medication. Here are the side effects: be sure your doctor looks at this.
Get emergency medical help if you have any of these signs of an allergic reaction while taking hydroxychloroquine: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.
Call your doctor at once if you have a serious side effect such as:
muscle weakness, twitching, or uncontrolled movement;
loss of balance or coordination;
blurred vision, light sensitivity, seeing halos around lights;
pale skin, easy bruising or bleeding;
confusion, unusual thoughts or behavior; or
seizure (convulsions).
Less serious side effects of hydroxychloroquine may include:
headache, ringing in your ears, spinning sensation;
nausea, vomiting, stomach pain;
loss of appetite, weight loss;
mood changes, feeling nervous or irritable;
skin rash or itching; or hair loss.
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects.
Read more at https://www.drugs.com/sfx/hydroxychloroquine-side-effects.html#I4ojQU2eX8sQRgp8.99
Hope you are feeling better and that you can enjoy the summer.
Related topics
plaquenil, peripheral neuropathy, sjogren's syndrome, hydroxychloroquine, methotrexate, muscle
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