RA Goals?

Posted by lharrison74 @lharrison74, Oct 6, 2023

I've been dealing with RA for 4 years now. I don't believe I've ever been in remission. I'm currently on Methotrexate and Hydrocloroquine. I'm allergic to sulfa drugs so I'm considering biologics. I'm currently trying to figure out what my treatment goals should be so I can determine if where I am is good enough. I'm currently out on std due to fatigue and brain fog. I couldn't get syringes in May for 3 weeks so it threw me into a major flare. I was then diagnosed with tricompartmental degenerative disease in both knees. Oh joy! So is the treatment goal low crp/esr levels, more good days then bad, no pain, or what?

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The first years following the diagnosis are hard; so much to learn and so much to adapt to in every aspect of life.
Most important: develop a medical team you trust for the physical needs and a support team for the mental and emotional adjustments.
I found a face to face group the most valuable in facing the overwhelming requirements and adjustments to my new life: what exercises, equipment, the endless paperwork, and understanding support from others, who were on the same journey- a real lifeline!
All this takes the 'shock and awe' down to workable bits and brings normalcy to life.
The goal? ... whatever helps! - for both short term and long term goals. What works for one, helps the other.
Establishing what YOU believe to be the most important goal, is the goal.
You are already advancing, in your consideration of possible medication changes. The biologics can be life changing. I was on them for 5 weeks, and began to experience all the benefits they promised, (ah, wonderful) but then developed side effects. But the benefits were so amazing, I would encourage any 'of us' to give them a try!
You have made a great beginning in this long eventful journey.
I wish you all best of wisdom as you consider the next steps.

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@lharrison74 I really like what @thisoldewe , Christine, told you. She, of everyone, is an expert! One thing that I would add, is that your goals should be short and measurable. Don’t try to do everything at once. One step at a time! And, I’ll bet, that Christine will be there to encourage you!
You also mentioned fatigue, the biggest problem that all of us have. You might check out the following discussion on handling fatigue.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
Other members are talking about how they manage fatigue.
Think you can become a ‘spoonie’?

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Thank you Becky for your kind words, but we must remember that no one is truly an "expert"... even the "specialists' specialists".
Our bodies are truly " fearfully and wonderfully made", and scientists have simply not unfolded all the mysteries of these bodies.
In the meantime, we must pool our understandings and experiences to encourage each other on our journeys!
Thanks for the article on fatigue!
All the best to my "Connect Buddies"!

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Hello,

I love it when people share their experiences. I have psoriatic arthritis which, like rheumatoid, is autoimmune. It is treated similarly. I am also on methotrexate and hydrochloroquin for 30 years. I have had this diagnosis for 33 years and keep on learning. I have heard wonderful things about biologics, so when my PsA acted up I thought I would give it a try. Biologics block a part of the immune system that might be causing you to react to things that are not the enemy. There is no "test" to confirm which part of the immune system needs blocking, so here is where it is a bit of a trial and error. I first tried a TNF inhibitor as this is one that many people have success with. It made 0% difference after 6 months. I next tried a IL-17 inhibitor to which I had an allergic reaction (which may have to do to having oral allergy syndrome - also autoimmune). Next I tried a JAC inhibitor which caused me to be sick every time I was exposed to my grandkids. My specialist and I concluded that this part of my immune system should not be blocked.
Your body is a wonderful machine and each of ours is different. Biologics are not for me but most people do very well with these. I like what previous writers have replied to you and I encourage you to keep looking as new remedies are coming out for RA and any other rheumatological (autoimmune) disease. This connect is a great start.

Wishing you well with your search,

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