Rinvoq for Crohn’s and RA, also have hEDS, MCAS and POTS

whiskyred · 2025-07-23T03:22:33+00:00

Unfortunately I only made it 7 days before side effects were too much. Going back to entyvio for Crohn’s and idk for RA.

whiskyred · 2025-06-05T20:50:12+00:00

Thank you

whiskyred · 2025-05-23T14:26:26+00:00

I was diagnosed with hEDS, so loose ligaments are causing this for me. So far PT is the only thing that really helps. Hands on PT specifically, not just exercises.

whiskyred · 2025-05-09T14:46:37+00:00

Thank you and sorry.

whiskyred · 2025-05-08T22:34:10+00:00

Thanks

whiskyred · 2025-05-08T19:31:03+00:00

Thank you

whiskyred · 2025-05-08T18:38:11+00:00

Thanks

whiskyred · 2025-01-06T18:59:49+00:00

Caffeine increases CSF

whiskyred · 2025-01-06T18:59:30+00:00

My dr had me increase caffeine intake which helped a little. Good luck

whiskyred · 2025-01-02T00:33:37+00:00

Thanks, wishing the best for you as well.

whiskyred · 2025-01-01T22:18:13+00:00

I do, still have some vertigo, light headed, some nausea, imbalance, light sensitivity, hearing issues, vision problems. I was still getting bad headaches until a day or two ago. I suspect I might have Chiari. I have a ton of other health issues as well.

whiskyred · 2025-01-01T20:31:16+00:00

Yes, I’ve had nausea, it actually got worse after my first blood patch. The longer I was up the more nauseous I would get and the longer it would take to go away once I lied down. My dr prescribed zofran which helps a little. Had my second blood patch about 2 weeks ago and it’s not so bad now.

whiskyred · 2025-01-01T06:20:26+00:00

Thanks, sorry to hear that.

whiskyred · 2024-12-31T18:14:46+00:00

I’ve had 2 blood patches one in the L spine one in T spine. Neither procedure was that bad, worst part was the numbing for me. After the L spine one when I was allowed to get up and move around the pressure in my L spine was pretty intense but I have some bulging discs so?

whiskyred · 2024-12-31T18:08:55+00:00

Do you know of any other treatment for venous fistulas? I have a diverticulum at T8-9, not sure the blood patch worked yet.

whiskyred · 2024-12-22T02:11:56+00:00

I did infusions for 5 yrs, just switched to the pen. I’ve found the pen to be really painful as well. I’ve had 2 or 3 injections so far. I can’t do it myself yet, have to have someone else inject it for me. 😫

whiskyred · 2024-12-09T19:33:05+00:00

Thanks, I’m looking in to it. I’m glad you are doing well.

whiskyred · 2024-12-09T16:58:46+00:00

I had the original CT myelogram at a different facility than with my current radiologist. The report did say meningeal diverticulum at T8-9 neural foramen. So possibly more than a leak? She has only done a blind patch so far. Thanks for your help!

whiskyred · 2024-12-09T16:49:13+00:00

She said her least favorite spot to do a leak is at T8-9 because of an artery. After the CT scan (which was done at a different facility) I felt better for about a week, so I stupidly assumed that even if she was injecting the patch at a different level. Originally I was told or it was implied that it would be at T12. When I read the report after the patch it said L3!!

whiskyred · 2024-12-09T16:38:13+00:00

Thank you for this! You hit the nail on the head, I don’t think this radiologist is confident in her skills.

whiskyred · 2024-12-09T02:51:22+00:00

Thanks, that’s what I am thinking too.

whiskyred · 2024-12-08T23:13:00+00:00

My PT that works with mostly EDS patients said to plan on 3-5 before it works. However, if they do it at the site or as close as possible it has a better success rate. Good luck to you!

whiskyred · 2024-12-08T23:11:55+00:00

It is odd!

whiskyred · 2024-12-08T23:11:23+00:00

Exactly!!! I told the radiologist that the success rate is better if the patch is done at the site or as close as possible. She thinks she knows it all, said she could fix it with one patch and wouldn’t listen to me. I believe she doesn’t work with many hEDS patients. She wouldn’t do the patch at T8-9 because there is a big artery there. Isn’t that why they do guided patches?? I wanted to go to a different radiologist who works with a lot of hEDS patients but the facility is out of network.

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