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Uncertain about medication path.
Autoimmune Diseases | Last Active: Sep 5 6:18pm | Replies (22)Comment receiving replies
@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take up to 6 mths to help my joint pain. It has done nothing...I had trouble with nausea and diarrhea with it throughout and my rheumatologist said if I can't tolerate it I would never be able to tolerate methotrexate, which was so disheartening. I see her this week and have no idea what will be next. I also have osteoarthritis and she says my pain is likely that and not RA...I'm so confused. I can't take any NSAIDS due to kidney issues so no pain meds except tylenol arthritis which does nothing. I'm an active person who works out daily and have all my life. I'm battling through it all but so disheartened by the feeling that there is nothing out there to help me. Do I insist on trying methotrexate despite her negativity towards it? ugh...
Replies to "@adlttl123 I was diagnosed in January and put on Plaquenil. I was told it might take..."
@kmg218
When I was first diagnosed with RA the doctor put me on methotrexate and Plaquenil. and some others and I could not tolerate any of them. For me I knew right away if I could tolerate a drug. No I would NOT PUSH THROUGH!! I’m with my 4th Rheumatologist and he is great. They are not all created equal so I hope you learn to trust your self. There are great drugs out here. The first medication that worked for me was Embrel the epi pen. I also have Osteoarthritis and I have…ALL MY PAIN FROM RA. It’s inflammation and Tylenol will NEVER EVER HELP YOU. Sorry to be so blunt but I’m way ahead of you and I wish someone had said these things to me! Even though they are just my experience. I think everyone has to start on methotrexate for insurance purposes if nothing else and they say…it’s the “gold standard of RA! Boo Boo!!😊
@kmg218
I feel for you and totally understand. I tried Methotrexate and it gave me horrible diarrhea. I am now on Orencia infusions and I am tolerating it so far. I have had only 3 infusions and the only negative effect so far is mild dizziness that lasts 1-2 hours. Because of this I make sure to have a driver.
@kmg218
There are other options for RA, including kevzara which I take for PMR. It takes up to 3 months for full effect and does nothing for my osteoarthritis though. I also take 3mg LDN, which I started as a bridge from prednisone to the kevzara. I know it helps me sleep pain free at night. I can't stay on prednisone because of a subsequent SMM diagnosis. I will mention that LDN is an off label prescription, requires a compounding pharmacy and is not covered by insurance. The cost is quite reasonable though. I pay $110 for a 90 day supply at a local compounding pharmacy, but if I use an online compounding pharmacy I would only pay about $80 and they would mail it to me. There are very limited and very small studies so far for its use with RA but it is garnering more attention for its potential.
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@kmg218
Ask for more tests. Has the dr tested your SED and CRP?
They are the first test toward PMR.
I do not know the tests for RA.
Have you tried a trial run of Prednisone?
Prednisone tends to bring quick relief and is one of the ways they diagnose.
I have PMR and have great success with KEVZARA. It is also used for RA.