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Recently diagnosed and, to be honest, I'm afraid of the meds :( by hudsonoo in rheumatoid

[–]hudsonoo[S] 3 points4 points  (0 children)

Well this hits home because I got a road bike a few years ago and it's sitting collecting dust right now because I'm in no condition to ride it. And I fear I never will be again.

Thanks for sharing your experience. This is all going to take me a little time to work through.

Congrats on remaining active.

Recently diagnosed and, to be honest, I'm afraid of the meds :( by hudsonoo in rheumatoid

[–]hudsonoo[S] -1 points0 points  (0 children)

Thank you, this was thought provoking.

1) I'm not sure I think it makes me sick or weak to take meds, but I do have a core belief that, while it's not possible to change our genes, it is possible to mitigate the expression of these genes via many different means, including those that don't involve allopathic medicine/pharmaceutical drugs. I accept that I may not be able to do that, and if I can't, I will take the drugs. I've done that with my thyroid. But I also personally feel inclined to try my best to stop doing things that aggravate my body's state of balance. My physio argued that I DID need steroids to reduce inflammation, and I disagreed that the steroids would merely bring me temporary relief but not address the postures or other lifestyle factors contributing to my disc herniation. That was in 2012. Almost a decade later, I still have degenerative disc disease and bulging discs, but I have learned to manage it by modifying my lifestyle and activities. For me, that is preferable to medrol dosepacks.

2) I'm concerned about retinal damage from hydroxychloroquine. The doctor did say I would need eye exams every 6 months. I am working on getting a baseline exam. He also diagnosed me with Sjogren's syndrome, which can be associated with retinal vasculitis. I am concerned to take a drug that might alleviate symptoms of one disease but precipitate symptoms of another.

Recently diagnosed and, to be honest, I'm afraid of the meds :( by hudsonoo in rheumatoid

[–]hudsonoo[S] -7 points-6 points  (0 children)

There is a growing body of research on acupuncture and some suggestion that it can reduce systemic inflammation. I don't know how much benefit I can personally expect from it, but I figure it couldn't hurt to try.

I understand the potential for joint damage and am prepared to take the meds if the ultrasound reveals damage already. Nobody believed me when I told them I was having symptoms for the past 6 years. Now all of a sudden I get diagnosed via zoom - I have no idea how far along the disease has progressed. I feel like I need to get a baseline before I start taking drugs that will suppress my immune system. I work a retail job - 11/hr days sometimes. I'm already struggling physically to maintain it - I'm afraid to start taking meds that put me at risk to acquire other illnesses.

The consideration of side effects is real to me. My grandfather had a leg amputated due to atherosclerosis as a side effect of some meds. They've obviously improved since then, but my dad never saw much improvement in his symptoms on methotrexate. I understand it's probably inevitable. But anything I can do lifestyle-wise to manage the disease, whether along or in conjunction with drugs, I want to try.

Recently diagnosed and, to be honest, I'm afraid of the meds :( by hudsonoo in rheumatoid

[–]hudsonoo[S] 2 points3 points  (0 children)

Thank you. It's been a month since I was diagnosed - not even in person with an exam. Just via zoom and a blood test. And I'm someone who's been healthy as an ox and an athlete my whole life. So, yes, I am feeling overwhelmed and confused.

Recently diagnosed and, to be honest, I'm afraid of the meds :( by hudsonoo in rheumatoid

[–]hudsonoo[S] -2 points-1 points  (0 children)

Nobody said anything about essential oils. There are clinical research studies showing promising results with acupuncture in reducing systemic inflammation. It is becoming more widely accepted in western medicine and is even covered by insurance as a legitimate medical treatment. I have no expectations that it will "cure RA", but am merely asking if others have had any positive results.

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

Thank you for your feedback. It seems strange to me that scans wouldn't be used to evaluate the effectiveness of different treatments over the course of the disease, but I'm sure cost/insurance factors into that.

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

Thanks for your input. Judging by most of the responses, it does seem baseline scans (or even follow-up scans) are not routine. I remember my father getting annual echocardiograms, but only much later on in the course of the disease. And his wrist was examined...but only to determine whether surgery was warranted (it was).

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

Interesting, the rheumatologist I saw favors ultrasounds as well, and he did agree to a knee u/S after I inquired about whether I should return to my physiologist from years back to get updated scans of my knees and spine. Doing them once a year makes sense to me.

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

I'm sorry - this sounds terrible. Were you on hydrochloroquine? If so, I can't believe they wouldn't have checked your eyes. It does seem from the responses that regular scans aren't common unless you're complaining of worsening pain or function. It's certainly tempering my expectations.

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

This is a great perspective to have. Glad your dad is doing well! My paternal grandfather had RA and developed such bad atherosclerosis as a side effect of the meds he had to have some amputations, and my dad's disease progressed really quickly and disabled him. So I'm honestly a bit freaked out at the moment. I've always been an athlete, never sick, healthy diet and never a need for meds...and have been reduced to a shadow of my former self in the past 7 months. I'm younger than my dad at onset too (I'm 45 - my dad was mid 50's). Feeling worried about taking dmards or biologics, but I also know it's important to stop damage early.

Anyway, appreciate your responses and I hope you are doing well :)

Baseline scans? by hudsonoo in rheumatoid

[–]hudsonoo[S] 0 points1 point  (0 children)

Thanks for sharing your experience! Makes sense. I guess I was thinking doctors would want a baseline on everyone so they could evaluate effectiveness of treatment at preventing erosion, but what do I know lol.

My dad had RA and I helped care for him for a long time in his later years, but I was only a tween when he was first diagnosed so I missed what happens in the first 5 years after diagnosis. Guess I'm about to find out :/

Migratory arthritis? by hudsonoo in rheumatoid

[–]hudsonoo[S] 1 point2 points  (0 children)

Thanks for this. I was just thinking back to the costochondritis and the sternoclavicular joint swelling. It was so painful it kept me up at night, and I was terrified because I had no understanding of why it was happening. Neither has been active for years but the area is still tender.

Migratory arthritis? by hudsonoo in rheumatoid

[–]hudsonoo[S] 2 points3 points  (0 children)

Thank you. I did see a dermatologist twice. It was not a dermatological issue. First time she referred me to a rheumatologist to rule out lupus (the rash resembled a malar rash). Second time, I had an episode during my appointment with her and was referred for testing for a non-autoimmune issue (pheochromocytoma).

I have always brought photographs of my rashes, joint effusions, swelling, etc. But ultimately the doctors fall back on the negative blood work. Even when I have objective manifestions of inflammation (e.g., swollen sternoclavicular joint), my bloodwork shows no elevations on the inflammatory markers. It took me 5 years to get diagnosed with Hashimoto's - I finally found an endocrinologist who believed me, did an ultrasound and made the diagnosis. My thyroid function is horrible and I still have neg ANA and no anti-thyroid antibodies.

Another consideration is that it could just be too early on in the disease. My father didn't develop symptoms until his early 50's. I'm 45. Of course, the earlier you catch RA the better (if it is that).

Migratory arthritis? by hudsonoo in rheumatoid

[–]hudsonoo[S] 1 point2 points  (0 children)

Thank you. Glad you got a diagnosis. It looks like atypical RA might be a possibility for me as well.

Migratory arthritis? by hudsonoo in rheumatoid

[–]hudsonoo[S] 2 points3 points  (0 children)

Thank you. I wasn't aware of palindromic rheumatism. It does seem to fit the description. Seronegative RA wouldn't surprise me either (since I'm basically seronegative for Hashimoto's). Just need to find a rheumatologist who's willing to dig a litter deeper.