I am moving to the Woodlands in Texas... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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I am moving to the Woodlands in Texas anybody know a Doctor Who is good with Hughes syndrome

designer16
designer16

I am moving to the Woodlands in Texas anybody know a Doctor Who is good with Hughes syndrome

Designer 16

13 Replies
KellyInTexas
KellyInTexasAdministrator

Hey ! Welcome to the lone ⭐️ state... and all that jazz.

I hope you are not coming for at least two months or so... get you vaccine because... well all hell is about to actually break loose I’m afraid .

I’m in Kerr county and only 4 % have full vaccination, 7 % 1/2 vaccination ( 1 of 2 needed shots.)

Hopefully by next Wednesday when the mask mandate lifted and 💯 % full business open we will be at 11% plus.

Roll on Johnson and Johnson!

Hopefully Greater Houston area has had better access than we have had. We were not a hub.

I do not know who to recommend.

I’m due my rituximab infusion Monday- I’m to see the PA. I will ask him if he can catch the ear of my rheumatologist to ask on your behalf.

Could you put a call into dr Schofield and ask? That’s always an option too.

GinaD
GinaD in reply to KellyInTexas

I was so sorry to hear that TX and MS will soon lift all restrictions. WVa is one if the states ahead of the game in vaccinations, but I fear our governor is also going to. open too soon.

KellyInTexas
KellyInTexasAdministrator in reply to GinaD

Well, shots in arms, shots in arms! I’m glad there is such advancement in such an amazing short time- this is simply phenomenal.

I marvel at the world’s efforts in the past year. It’s really only been about a year now this up coming week that it became obvious to the world that we really had a global problem on our collective hands.

I do fear we ( Texas) are going to loose ground opening maybe (?) a month too soon- we simply are not “vaccine ready.” But otherwise I do support opening, from the great data I’ve read and heard about from the experts on the vaccine effectiveness .

Please stay safe Kelly. Best of luck with your Rituximab infusion on Monday. My nephew (CAPS and DAH) is doing well. I have been wondering something for a bit, but keep forgetting to ask you. Do you know of any relation between when your blood might be too sticky and level of platelets? My nephew is still on Lovenox injections, and his blood is tested by AntiXa levels, and it seems (to me anyway) that when his AntiXa is low (blood is sticky) his platelets also drop. His Hematologist then increases my nephew's Lovenox dose, and his platelets increase. This has been happening for about 6 months, maybe not long enough to be a pattern, but it sticks out to me. Any thoughts?

KellyInTexas
KellyInTexasAdministrator in reply to kiminabmw

That’s interesting.

I don’t know of a connection. I imagine there is one.

I did notice when my “INR” was consistent too low kidneys were consistently not filtering properly. ( GFR) . This clearest right up when my inr range was found.

Just to show our bodies really need hemostasis Of blood.

I’m going on my second year of rituximab now. I get it every 4 months now at 1000 per bag.

It’s not helping a terribly great deal. But then again- would I be a lot worse off now without it?

Ivig is going to be trialed next- just waiting to get the Covid better control - my rheumatologist said. He wants hospital free and clear.

I hope your nephew is well.

Thanks Kelly. My nephew has had both IVIG and SCIG with success. Not sure if this would be an option, but his Rheumotologist was able to get it approved to be done at home. They went through an infusion company, and a Nurse came to his apartment to infuse him. His Doctor preferred that, over sending Randy into the hospital because his is so immune suppressed. I purchased a large room air purifier, which runs on high and Randy and the Nurse both wore masks. His Rituximab had to be done in the hospital though. Be Well.

KellyInTexas
KellyInTexasAdministrator in reply to kiminabmw

Yes, I’ve seen an immunologist ( in San Antonio ) who wants to prescribe SCIG. ( less side effects because it goes in more slowly.)

Insurance denied . They are more accustomed to using it for Primary immune deficiency.

She said she would call fir a peer to peer review on basis of mast cell activation syndrome and APS dx when it’s time to move forward with it, or regular rheumatologist can do, and she can advise him. He does not do those infusions at his clinic.

I forgot to mention, Randy's Doctor did have to do a peer-to-peer, because his Insurance would only approve IVIG. The other nice thing about SCIG is they can teach you to do it yourself. We opted for a Nurse to come every time for Randy, but a lot of people learn to do SCIG themselves. Please let me know how you are after the Rituximab next week. Kim

KellyInTexas
KellyInTexasAdministrator in reply to kiminabmw

Thank you- you have been such a nice support.

I hope we can continue to be a helpful support to you and your family also.

Tell Randy he has , “all the love.”

Welcome to Texas!!!

I live in Northwest Houston and can recommend my doctors that I use. I don't know of anyone that is an expert or deal specifically with Hughs Syndrome. But I do like my doctors, and I have my APS under control.

Houston Methodist is where my Primary Care doctor is; he is the one that diagnosed me. My hematologist is Dr. Uzma Iqbal, and my rheumatologist is Dr. Boa Nguyen.

KellyInTexas
KellyInTexasAdministrator in reply to APS4EVER

I have heard of these doctors- and I’m so glad you are having success with them.

KellyInTexas
KellyInTexasAdministrator in reply to APS4EVER

Which hospitals are they affiliated with? Taub?

Houston Methodist Willowbrook location

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