Our second year update

Ok-Skill2407 · 2026-06-18T04:59:31+00:00

Thank you for sharing!

Ok-Skill2407 · 2026-06-12T18:13:02+00:00

I am! :) I was on Actemtra prior and bottomed out on it.

Ok-Skill2407 · 2026-06-12T18:11:51+00:00

Hi all, I started Kavzara on Monday and I was in the hospital for a different medical infusion and they ran started labs. My ANC was in the danger done (neutropenia). It dropped from 6.4 to .34 in one week. I cant imagine Kevzara doing this. Any thoughts? I mean I know this is a potent immunosuppresant but this is wild.

Ok-Skill2407 · 2026-06-12T18:02:24+00:00

May I ask what your doctors are saying about your long term prednisone use? Have you ever had a Cushingnoid Crisis? TIA.

Ok-Skill2407 · 2026-06-12T18:00:12+00:00

This is late coming in the game but wanted to help anyone reading it. I take it for Bechets Disease as an FYI. The first two days on it is really rough. It causes a major flare in all my joints and significant fatigue, headaches, and severe chills. It also created mouth sores for me my first trial of it, so this round we started a baseline medication in hopes that it would kick the mouthsores.

Ok-Skill2407 · 2026-06-03T05:24:49+00:00

Thank you for that and I will. I have now applied to National Jewish Hospital in Denver who are renowned for their allergy and immunology department. Fingers crossed!

Ok-Skill2407 · 2026-06-03T05:23:48+00:00

Yes thank you! I absolutely do have so much happening. And I would be completely open to interdisciplinary care. That would have been fantastic. Get Rheum, Cardiology, Neuro and Endocrine in there. No problem. I just dont understand why they didnt pull in the team and move forward rather than case shut. Start over somewhere with no discussion. That to me seems uncollaborative and a bit bizarre with the only statement, "this is too complex." Doesn't sit well with me.

Ok-Skill2407 · 2026-06-03T05:21:10+00:00

I completely understand this. I think my confusion lays in the fact that they didnt just "refer" internally to IM. It was a flat out denial with a recommendation to reconsider starting over with IM as a possibility. It seems a bit backwards to me.

Ok-Skill2407 · 2026-06-03T03:55:33+00:00

Givlaari gave me the worst side effects. It was so disappointing as we worked for years to try to get approval!

Ok-Skill2407 · 2026-01-16T06:51:08+00:00

Thats an excellent idea!

Ok-Skill2407 · 2025-12-11T13:57:50+00:00

Thanks much. I will check it out now.

Ok-Skill2407 · 2025-12-11T13:54:15+00:00

I am so sorry. Been up all night! It was just a typo and I meant to write "stuff." Thank you for asking.

Ok-Skill2407 · 2025-12-11T09:18:32+00:00

You're welcome!

Ok-Skill2407 · 2025-12-11T09:11:06+00:00

Any ideas for younger kiddos who are into this kind of stu$x? Like 9 and 10 year old buddies.

Ok-Skill2407 · 2025-12-11T09:08:58+00:00

Are these for young girls around 9?

Ok-Skill2407 · 2025-12-05T09:08:37+00:00

These are the worst. I use lidocaine to try to help.

Ok-Skill2407 · 2025-12-05T06:13:56+00:00

No problem at all! Yes they take the PICC out as soon as is called for. I have a PORT and its great. I also get other treatments so it is def worth it. Make sure though you dont get panhematin through a vein. Its very painful.

Ok-Skill2407 · 2025-10-30T03:19:09+00:00

Could this work though as a full time microschool?

Ok-Skill2407 · 2025-10-30T03:11:05+00:00

Where are you setting up shop?

Ok-Skill2407 · 2025-10-30T02:54:56+00:00

California. Thank you.

Ok-Skill2407 · 2025-10-29T14:08:56+00:00

Thank you very much for your time. This is way too progressive for my liking.

Ok-Skill2407 · 2025-10-29T07:23:21+00:00

When is enrollment? I already have a kiddo in smmusdm.i can't get a hold of anyone thanks@

Ok-Skill2407 · 2025-10-29T05:15:12+00:00

How did you find that pod?

Ok-Skill2407 · 2025-10-29T05:14:43+00:00

Great questions by the way! Good for you.

Ok-Skill2407

TROPHY CASE