Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

912 Members

7,373 Posts

0 Online

Daisy90 08/25/2020

Hello! I was diagnosed with lupus, uctd, MCTD, sygorns last week. I was put on hydrox last Friday (5 days ago). Ever since taking it makes me WORSE!! I have increased joint pain all over body, migraines like 2 a day and nausea along with sharp stomach pain.

Am I ok to not take it anymore? I left a VM for RA doc and of course no one got back with me today. I can't do it anymore! I couldn't even get out of bed this am had to have help from hubby. It's making symptoms worse.

Andromeda8 08/25/2020

Hi daisygo, perhaps you can ask your family doctor to order a creatine kinase level in your blood. If the CK level is elevated, then it may mean that you are suffering from rhabdomyolysis, a side-effect of hydroxychloroquine that causes muscle pain and swelling. How many milligrams of hydroxychloroquine are you taking per day, and may I ask your weight? The rhabdomyolysis occurs at high dose of hydroxychloroquine. What I would do is to do the blood test first before stopping the drug, then ask your doctor for permission to stop the drug.

I have been on hydroxychloroquine for more than 10 years without problem, although I did have severe muscle pain when I had started the drug, but this disappeared eventually. Check with your doctor first before doing anything. Best wishes Marie

Daisy90 08/26/2020

I am 5‘6 and 146 pounds and I take 200ml 1 time a day.

Thank you so much

Andromeda8 08/26/2020

Hi daisygo, for a weight of 146 pounds or 66kg, taking 200mg of hydroxychloroquine daily is a low dose. Let's think back to when the muscle + joint pain has started. Can you think of anything out of the ordinary. What you have taken at the time of onset of these symptoms. The new symptoms may mean something else, e.g flaring which hydroxychloroquine alone is not sufficient to treat. Perhaps you can discuss this issue with your rheumatologist to rule out lupus flaring.

Daisy90 08/26/2020

I started it last Friday - then Sunday it hit me like ton of bricks in bed all day. Took the meds Monday at 9pm then Tuesday I was in bed all day and couldn’t even move pain so bad. I mean the reason she put me on hydro is for joint pain and flares. This meds made it 100x worse like I was dying the pain so bad. I prob should of went to ER due to pain was excruciating. Called RA dc today no one has called me back yet.

Andromeda8 08/26/2020

HI daisygo, hydroxychloroquine takes 6 months to build up in the body (if taken at a high dose) before it can work. Perhaps ask your doctor (family doctor, rheumy) to order an autoimmune panel to see what is happening. It seems that you are already flaring so your rheumy may need to order a short course of prednisone on top of the hydroxychloroquine to reduce the inflammation. Hydroxychloroquine is for long term use, to stabilise your immune system and prevents flaring, but it cannot work overnight because it has to accumulate in your body over time before it can work.

Join the Conversation