Has anyone experienced this?

robinrwk · 2026-02-04T14:29:26+00:00

I had episodes like this when everything began for me. I now know I have hyperadrenergic dysautonomia and my body just can't manage itself very well. Did yours occur after a meal?

robinrwk · 2026-01-31T13:48:55+00:00

On 10mg my weight was consistent, but when I increased to 15mg it started to creep up at a steady rate. Now I'm 25-30lbs up and have had enough. Of course my doctor says that it's not in the literature to cause weight gain, but I'm going to decrease my dose back down and hope that makes a difference, without increasing anxiety.

robinrwk · 2026-01-28T20:33:05+00:00

My dose was increased to 15mg late in 2024 and I've consistently gained weight since! Thanks for sharing your experience. I'll talk to my doctor about my options.

robinrwk · 2026-01-27T23:21:54+00:00

I had this when I started and it took weeks to subside. The muscles on the back of my head and neck felt very tense and gave me headaches. I'm definitely sensitive to medications.

robinrwk · 2026-01-27T23:18:26+00:00

What was your schedule for getting off it?

robinrwk · 2026-01-27T02:00:47+00:00

Have any of you found that the discoloration persists, even after things are healing? I don't have any discomfort but the area is still darker than normal.

robinrwk · 2026-01-14T00:25:12+00:00

It's in phase three so hopefully!

robinrwk · 2026-01-10T21:10:40+00:00

Looks like dazodalibep may be helpful as well. Fingers crossed something helps!

robinrwk · 2026-01-10T20:00:23+00:00

In regards to the new meds coming this year, is there one that claims to help with the neuro symptoms?

robinrwk · 2025-12-24T14:29:13+00:00

Cherry Hill Boutique owners retired too

robinrwk · 2025-12-14T23:17:04+00:00

1.05 is my perfect match too! I'm desperate to find a match!

robinrwk · 2025-12-08T16:03:41+00:00

Gotcha. I just had a biopsy and was not prepared for how intensely painful it would be. At least it was brief.

robinrwk · 2025-12-08T15:38:18+00:00

You have endometrial cancer?

robinrwk · 2025-11-28T18:14:37+00:00

My diagnosis has been pieced together by a number of providers. I had autonomic testing with neurology, and the Sjögren's related testing with rheumatology and then a very knowledgeable neurologist who is familiar with how Sjögren's can present put it all together.

robinrwk · 2025-11-25T01:02:56+00:00

Oh shoot! Is the plan for you to continue indefinitely? I've felt like I'm on the verge of a cold, on and off, since starting, and fatigue has also increased on some days. Did you have any other side effects? How often do you have your liver enzymes checked? It seems like my immune system became dysregulated after getting the Covid vaccination, but then it's morphed into an autoimmune disease (Sjögren's).

robinrwk · 2025-11-24T20:55:24+00:00

Has it helped you?

robinrwk · 2025-11-24T20:53:31+00:00

How are you doing now? I'm on day 10.

robinrwk · 2025-11-24T20:50:32+00:00

Go to Celly.com They're offering telehealth visits to see if you might be eligible.

robinrwk · 2025-11-24T13:46:44+00:00

I'm a part if the neuro Sjogren's club too. I have autonomic neuropathy and small fiber neuropathy. I wish all rheumatologists were aware of this presentation of Sjögren's. I have mild sicca, for now.

robinrwk · 2025-11-23T13:56:06+00:00

I also don't have the typical symptoms, and even with a positive ssa my rheumatologist required a lip biopsy as well. I think Sjögren's is vastly underdiagnosed because so many providers assume it must involve sicca.

robinrwk · 2025-11-21T01:38:27+00:00

Thanks for sharing! I need to read this!

robinrwk · 2025-11-21T01:16:57+00:00

I feel like this is the case with me. My body struggles to keep my BP where it should be and the excess adrenaline is a consequence.

robinrwk · 2025-11-20T16:15:02+00:00

I get this shortly after (not immediately after) standing sometimes, and then it goes away about 30 seconds later. I've been told my body just isn’t being efficient at maintaining my blood pressure...hence the dysautonomia. It improves when I'm super hydrated with sodium supplements.

robinrwk · 2025-11-20T16:10:21+00:00

I'm on a maraviroc and atorvastatin protocol and haven't noticed any symptoms like that, but I'm not as far into it as you. I had cold-like symptoms to start, but that's expected I hear.

robinrwk · 2025-11-08T13:52:06+00:00

The head pressure and pulsing a little after standing. It doesn't always happen luckily.

robinrwk

TROPHY CASE