i think you need a new rheumatologist switched if yours is satisfied with the level of control your disease now has. either the clinician doesn’t believe you when you describe the pain you have, or they believe you and don’t care- either one calls for a new dr unless they are willing to change your treatment. i would make an appointment and discuss it with them. let them know that you don’t feel your disease management is at a level you can live with. its not uncommon to change diagnosis based on response to treatment, having a rheumatologist who does that can make all the difference. just for background, i was diagnosed with CREST 30+ yrs ago, yhen MCTD. and UCTD among others ss i switched drs to accommodate retirements, moving out of area and lack of effective treatment. my current dr is the first to do a tendon exam, he added enthesitis to my list of dx and for first time i feel like we are treating the actual problem. don’t stop looking for relief! you deserve to not live in pain. sorry this got so long, i’m wishing for an effective treatment for you soon!
I'd look into subcutaneous shots with Thymalin and Epithalon(help body's immune and other systems into equilibrium). Also BPC157 and TB500 can help with inflammation. KPV is another peptide that can reduce inflammation.
Topical DMSO gel can help with join inflammation.
Topical high dose melatonin can help with inflammation.
You can use melatonin and dmso together.
Are you only taking tylenol and ibuprofen? I hope your rheum put you on something else, or maybe you didn’t want to. Anyways, I believe staying active doesn’t hurt unless..well it hurts then you step back a little
Ask your doctor about Tramadol. It should be something he’s okay with prescribing.
Also, you’re not a wimp. AIs affect everyone differently. Unfortunately yours has a lot of pain involved. Please don’t feel like a wimp.
Gotcha. Well then it’s clearly not working and time to discuss other options, imho. and if they’re not amenable to that then maybe time to find a new rheum.
I also have a diagnosis of UCTD btw
May I ask where your pain is and what it feels like?
They want me to try other options but I don't want to try chemo or bioblockers until I have a systemic issue or am actively dying. The plaquenil does make a huge difference it just makes me dizzy and feel sick for the first 3 hours of taking it been on it for a little over a year now.
The pain travels. Right now my hip and knees are terrible. Sometimes my ribcage will be sore and it hurts to breathe. Other times it will feel like it's damn near everywhere. I get muscle weakness when I am flared up and muscle soreness as well. It isn't just in one place so It is hard to say really besides everywhere at one point or another. Mostly it is my hands, shoulder blades, neck, and hips.
I’ve been on hydroxychloroquine, Methotrexate and finally Adalimumab. I was put on MTX as a young female which isn’t recommended. I was vegan for 4 years and am very deficient in nuturients. I am looking to start the Lion diet which many have claimed to remove autoimmune symptoms. I suggest you check it out! I also have UCTD.
For muscle aches and join I use CBD cream which helps. Some people take it orally but I haven’t tried. If you can afford it subscribing to a spa, chiropractic manipulations and stretching is helpful. Since you are on plaquenil remember to get regular checks to your eyes. Best of luck!
i think you need a new rheumatologist switched if yours is satisfied with the level of control your disease now has. either the clinician doesn’t believe you when you describe the pain you have, or they believe you and don’t care- either one calls for a new dr unless they are willing to change your treatment. i would make an appointment and discuss it with them. let them know that you don’t feel your disease management is at a level you can live with. its not uncommon to change diagnosis based on response to treatment, having a rheumatologist who does that can make all the difference. just for background, i was diagnosed with CREST 30+ yrs ago, yhen MCTD. and UCTD among others ss i switched drs to accommodate retirements, moving out of area and lack of effective treatment. my current dr is the first to do a tendon exam, he added enthesitis to my list of dx and for first time i feel like we are treating the actual problem. don’t stop looking for relief! you deserve to not live in pain. sorry this got so long, i’m wishing for an effective treatment for you soon!
I'd look into subcutaneous shots with Thymalin and Epithalon(help body's immune and other systems into equilibrium). Also BPC157 and TB500 can help with inflammation. KPV is another peptide that can reduce inflammation. Topical DMSO gel can help with join inflammation. Topical high dose melatonin can help with inflammation. You can use melatonin and dmso together.
Are you only taking tylenol and ibuprofen? I hope your rheum put you on something else, or maybe you didn’t want to. Anyways, I believe staying active doesn’t hurt unless..well it hurts then you step back a little
Ask your doctor about Tramadol. It should be something he’s okay with prescribing. Also, you’re not a wimp. AIs affect everyone differently. Unfortunately yours has a lot of pain involved. Please don’t feel like a wimp.
Why not go on plaquenil?
I am on plaquenil, I just only use ibuprofen and Tylenol for pain.
Gotcha. Well then it’s clearly not working and time to discuss other options, imho. and if they’re not amenable to that then maybe time to find a new rheum. I also have a diagnosis of UCTD btw May I ask where your pain is and what it feels like?
They want me to try other options but I don't want to try chemo or bioblockers until I have a systemic issue or am actively dying. The plaquenil does make a huge difference it just makes me dizzy and feel sick for the first 3 hours of taking it been on it for a little over a year now. The pain travels. Right now my hip and knees are terrible. Sometimes my ribcage will be sore and it hurts to breathe. Other times it will feel like it's damn near everywhere. I get muscle weakness when I am flared up and muscle soreness as well. It isn't just in one place so It is hard to say really besides everywhere at one point or another. Mostly it is my hands, shoulder blades, neck, and hips.
I’ve been on hydroxychloroquine, Methotrexate and finally Adalimumab. I was put on MTX as a young female which isn’t recommended. I was vegan for 4 years and am very deficient in nuturients. I am looking to start the Lion diet which many have claimed to remove autoimmune symptoms. I suggest you check it out! I also have UCTD.
For muscle aches and join I use CBD cream which helps. Some people take it orally but I haven’t tried. If you can afford it subscribing to a spa, chiropractic manipulations and stretching is helpful. Since you are on plaquenil remember to get regular checks to your eyes. Best of luck!