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PolarIce

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Glad to hear you guys may have found some answers. I was going to suggest that this almost sounded like it could be a systemic issue.

I had a lot of random symptoms my entire life, not ever realizing that they were all related to one thing MCAS which is an allergic reaction to my own body because I have hEDS. Had no idea I had EDS either so none of this ever got picked up. I break out through various random stages of swelling and hives for what seems no reason at all, but it’s usually a MCAS reaction to nothing.

Your swelling could be a sign or symptom of an overall condition or something you didn’t realize you have(Not saying it could be something serious). Your body can get triggers depending on what the cause it. I wouldn’t rule out a general condition which giving your those episodes. Glad you are doing so much better and hopefully this is it for you. Hives are no fun.
 
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Sheila-Seattle

Sheila-Seattle

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@Jamie @Pumpkin
Thanks...I'm just back from a two week cycling trip on the tandem around Nova Scotia. Here's a link to that journal: https://s2cycle.com/2022-trips/nova-scotia-journal/ and the reason I haven't responded sooner. Actually I don't seem to be notified of posts so I should check that setting. And NO, I never received a Bone Smart water bottle...do you need my mailing address?

Meanwhile I'm literally just back from seeing the Rheumatologist for the first time since this whole mess started and came back here to do some research. He said that despite my blood work saying I didn't have Rheumatoid Arthritis he believes I do have and he wants me to start on Plaquenil. I have NO symptoms since the second course of Prednisone which I took prophylactically in order to assure we could do our bike trip. He said I can wait until I have another flair or start now. But because I flared within a week or two after the first course he's pretty sure I've got it. :sad: It's a lot to take in...and to learn about and make decisions about. YIKES. Any pointers greatly appreciated. Thanks for being there.
 
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Sheila-Seattle

Sheila-Seattle

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So here's what I just wrote to the Rheumatologist. Don't know when/if he'll respond:

I've been reading all day and have some questions. I'm looking into getting a second opinion. Not that I don't trust you but this is a big decision for me. I feel like if I knew for sure I really have RA I'd definitely start the meds now. But the more I read the less I'm so sure.

Can you tell me if there are any other tests to verify if I really have RA? The RHEUMATOID FACTOR, QUANT shows me at LESS THAN 10 IU/mL which is well within the range.

When I read the risk factors the only one I have is being a woman. I have no family history, eat an excellent diet, have never smoked, have not had any of the early symptoms of the disease such as fatigue, stiffness, and tenderness in the joints other than this new and recent onset. But even so no fatigue. It sounds like this typically starts between ages 40-60 so at nearly 73, this is "late onset".

I just want to be sure given that you've told me that once I start I cannot stop. So if we're wrong about the DX I'd be taking Plaquenil for the rest of my life for possibly no reason. And I'm worried about the known side effects, particularly the vision related ones. My readings say that's only with "long term use" but nothing tells me if long term is 5, 10 or 20 years. And given that I have NO symptoms and my tests show within standard range how would we assess if it was helping or worthwhile? The description says the drug protect joints and tissues from permanent damage and gradually reduce daily pain. But I have NO daily pain.
 

CricketHip

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Goodness, I see why you are so hesitant. Your letter to your Dr. is excellent and addresses several good points.
I hope you get a response soon!
 

Pumpkin

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Excellent letter, he should understand your hesitancy. I agree you should seek a second opinion.
Did the Dr give you any other options to treat your "RA"?

Your cycling trip sounds wonderful, happy your joint inflammation did not get in your way.
 

Jamie

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Great communication with your doctor and I think you're 100% right to follow this path.

I know Mike mailed out the water bottles, so I'll need to check and see if he can figure out why you didn't get yours.
 

Jamie

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Oops......Sheila.....I am SO very sorry. When I checked, the bottle was to go to a different member who shares your first name. Please forgive me. It was a special short-term promotion for people who made donations to BoneSmart back in the spring and, unless you did that during the promotional period, you wouldn't receive a water bottle. I apologize for the error.
 

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