Lupus pain

After being on hydroxychloriquine for 3 months, I no longer have the joint stiffness. But I have joint pain, it never goes away. Depending on my activity, it runs about a 4-5 on pain scale but can raise to 8-9 on a daily basis. If I go to bed for a whole day and do nothing I can get it to a 2-3. I have taken max on Tylenol, advil for 3 wks, and did not help. I did no want to hurt my liver and kidneys, so stopped. I see my pcp in 2 wks. I do take tramadol 3 times a day.

Farmgirl, Welcome!

Are you being treated by a rheumatologist? If not, I suggest you find one. If so, you need to see the rheumy not your PCP. It gets confusing if 2 Drs try to treat the same condition, and a rheumy is the expert on Lupus.

It sounds as though you may need one of the other medications that help Lupus, such as Prednisone, Cellcept, Imuran, or MTX. If none of those help, perhaps even Benylsta or IVIG.

Hi Farmgirl59,

Twenty one plus years ago I had a massive bleed that landed me in the hospital many times as a result of taking the max dose of Advil per day try to relieve joint pain. Little did I know at the time my end diagnosis would be Lupus. Please be very careful with over the counter medications like Advil, Tylenol and the generic equivalents as they do have damaging affects. I have also battled liver issues from Lupus and I really have to watch the amount of ibuprofen and Tylenol in pain medications. It's a never ending battle.

I wish you the best in your journey to find a good rheumatologist that will help you in your journey for the proper diagnosis and treatment, so you can get on the proper medication regimen.