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Posted By : Farmgirl59 - 3/23/2017 6:29 AM
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.

Posted By : 10bmd10 - 3/23/2017 6:51 AM
not to hijack this thread... but, I've been advised to stay away from Advil/IBuprofen as it could trigger flares. Anyone else heard the same? I try to stick to Aspirin / Tylenol, but not much helps
January, 2017 - Doctor is toying between a UCTD and Lupus diagnosis

Plaquenil, 200mg since January 6, 2017

Gluten-free since January 5, 2017 - I don't have celiac, but doctor advised it might help with the lupus/UCTD

Posted By : Lynnwood - 3/23/2017 7:28 AM
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.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Farmgirl59 - 4/3/2017 5:15 PM
I am on prednisone 10 mg daily. I have seen two rheumys, the first informed me my pain could not be a 9/10 and calmly sitting there. He gave me lyrica and said I have fibramalygia. I had a bad reaction. I was sent to a second rheumy and did lab, I had a positive ana,ss-a antibody,anti-rnp and said I probably will get lupus soon but he is perplexed what is wrong so for now he says I have connective tissue disease, but said if not already on plaquenil he would be putting me on it. I have taken pictures of my face and hair line for my pcp this week when I see her. I'm hoping she can find me a good rheumy.

Posted By : Melissa D. - 4/3/2017 9:16 PM
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.

Posted By : Farmgirl59 - 4/5/2017 5:53 AM
Thanks for the advice. It was my second rheumy that wanted me to take max Tylenol/advil for pain and not call dr until my temp reached 103. I thought wow, when my normal temp is 96-97. I tried to explain but he wouldn't listen. I am so thankful I found this site. For the last 3 yrs I've had odd stuff, now I know I'm not crazy.

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