Looking for practitioners in Chicago area

[ChicagoCubs]

Hello!

I am trying to find a rheumatologist well versed in APS in the Chicago area. We are located in the western suburbs

Thanks!

[kiminabmw]

My nephew (Catastrophic APS Survivor) sees Dr. Angelica Gierut, she is with Northwestern. Her office is in Warrenville, and she goes to both Central Dupage Hospital and Delnor Hospital. She saved my nephews life! I would highly recommend her, she is excellent and knows her stuff. If you need a phone number just let me know. In my opinion, she is the best in the area.

[KellyInTexas Administrator in reply to kiminabmw]

Thank you for offering your contacts- hoping your nephew is continuing to do well.

How old is he now?

[ChicagoCubs in reply to kiminabmw]

How frightening for him to experience CAPS. I think that is everyone’s worst nightmare. So thankful he is doing well!!

[kiminabmw in reply to ChicagoCubs]

Thank you!! My nephew Randy, really is doing very well, considering what he went through. You are right, worst nightmare. Thanks again.

[MaryF Administrator in reply to kiminabmw]

A great bit of help, so good one somebody can actually personally recommend a doctor. M

[CanaryDiamond10]

I receive excellent treatment from North Shore University, Glenbrook Hospital, Rheumatology department. It is a consortium of hospitals in the northern suburbs. All of the rheumatology doctors are excellent, but I hesitate to give you my MD's name as she already has a closed practice and I believe she will be deluged with appointment requests that she cannot fulfill. I do believe you should call and they will give you another rheumatologist familiar with APS.

[KellyInTexas Administrator in reply to CanaryDiamond10]

Thank you for helping- I’m not at all connected in Chicago. ( great to see you here!)

[kiminabmw in reply to KellyInTexas]

Hi Kelly. My nephew, Randy, will be 46 this July. His blood test results remain stable. His last Plasmapheresis was the end of November 2020, and his last IVIG was February 2021. He'll get his Immunoglobulin levels checked in 3 weeks, and then his Rheumotologist will know if Randy needs to continue with IVIG going forward. Oh, and his last Rituximab infusion was October 2020. The Plasmapheresis port was removed from his chest February 2021, it was put in September 2019. He is doing wonderfully. It will be 2 years May 9th since his APS went catastrophic. He is down to 3mg of steroid daily, and will drop 1mg monthly until he is off it completely. He still on Plaquenil, Cellcept, Insulin (steroid made him diabetic) and Lovenox injections, twice daily. He has been working part time from home for a year, and his doctor is releasing him back to full time hours, but still from home because of the pandemic. Randy did get this 1st Moderna vaccine 2 weeks ago, and goes back for his 2nd dose April 13th. We are hopeful they have finally got his condition under control, and he will remain stable. How are you? Did you get the Rituximab infusion?

[KellyInTexas Administrator in reply to kiminabmw]

This is great news about Randy, I know your family is breathing a sigh of relief.

I started Rituximab about two years ago I think?

It was initially given every 6 months ( always in a “set” two weeks apart at 1000mg per infusion.)

Then it was moved up to every 4 months.

My last “ set” was March 8th ( my 51st birthday- lol) and March 22nd of this month.

It doesn’t seem to be helping a whole lot with APS symptoms. But then again... we are not sure if we weren’t doing it- would I be worse?

What seems to be helping the most is a high inr ( 6.0 ) and Amovig injections monthly to help migraines. It’s helped tremendously.

I bridge with lovenox in increments depending on inr value. If it’s 4.8, I bridge with 20 mg if symptomatic of APS low inr.

Usually I will be symptomatic of low inr if under 6, but do not bridge until I hit 4.9, or so. If I’m 4.5, I bridge fully with 40-50 mg. Anything under 4.5 I bridge with 60mg every 12 hours- then back off while inr climbs in respond to bump up in warfarin. Inr checked daily during dips- other wise every other day- and always only by vein.

I’ve clotted through lovenox twice daily within a week. Including stating and clopidogrel. It wasn’t quite strong enough for me. So we have customized a strange hybrid plan for me involving micro boosts of lovenox alongside warfarin. It’s ridiculous. ( only because my body proved out DVT’s by scans at 4.8. InR.. )

Very symptomatic at anything under 6- it’s “progressing.”

I also have right temporal lobe epilepsy, so topirimate 300mg daily spirit dose- I weigh 112 pounds.

I also take methscopolomine bromide 2.5 mg morning and 5 mg evenings to help with brain gut dysautonomia.

The plan was to trial IVIG but during pandemic it’s been put on hold . This should happen in the future when hospitals have resources free.

[kiminabmw in reply to KellyInTexas]

WOW Kelly, that is a lot. I am glad you seem to be "controlled" at this point. Not sure if I had mentioned it, or if its possible for you, but Randy's insurance (after a Peer to Peer between Insurance and Randy's Doctor) was able to have IVIG at home with a Home Health Infusion Nurse. I wouldn't think IVIG would take a long time, considering your petite weight. Randy's was given 2 days in a row, and each infusion was 7-1/2 hours each. But he's a big guy, at 6'2", and 290 pounds. The high dose steroid for 20 months has put 50-60 pounds on him. As if APS on its own isn't enough, but thank goodness most don't ever have to learn about, let alone deal with CAPS! It is not for the Faint of Heart!! Stay Safe and Be Well.

[kiminabmw in reply to KellyInTexas]

Hope you will see this. Kelly, have you seen the article on the Johns Hopkins study concerning Mycophenolate or Azothioprine and the Covid Vaccine? Their study (ongoing) was on their organ transplant patients who took Mycophenolate or Azothioprine and got the 1st dose of Moderna or Pfizer vaccines. Their findings, after 1 st dose of the vaccine wasn't impressive and they expect similar results for immune suppressed (auto immune taking Mycophenolate or Azothioprine) as well. They will release more info once they have the data after the 2nd doses. We are very concerned since my nephew Randy has been on Mycophenolate for 18 months.

[ChicagoCubs in reply to CanaryDiamond10]

Thank you for replying To MY post. This is good to hear - northern suburbs aren’t too far!

[ChicagoCubs]

Thank you to those who replied to my request specific to Chicago suburbs. It’s great to hear this about the doc at CDH - we live just a 3 miles away!!!

[kiminabmw in reply to ChicagoCubs]

That is great, you are so close to CDH!!! I live in Will County, by my nephew (CAPS) lives in Carol Stream. When he was in ICU for 12 days, and on a vent for 6 of those days, I lived in CDH's ICU with him. (this was May 2019, prior to covid) What an amazing hospital!!! If you go with Dr. Angelica Gierut, I think you will be very pleased. Stay Safe and Be Well.

[ChicagoCubs in reply to kiminabmw]

Oh wow! He is so lucky to have such a caring Aunt! So glad this happened prior to COVID. But I am sure the pandemic was very scary for him since some of these poor people had similar catastrophic clotting. Did he know he had APS prior to his emergency? It seems I notice more females with it - but that may be more about more women being in the groups.

Yes- we are in Winfield right on the edge of Wheaton....super close!! We have many in our subdivision who work at CDH. I will definitely look her up!!

[kiminabmw in reply to ChicagoCubs]

Yes, Randy was diagnosed in 2015. He had some harsh vertigo episodes, so his Primary Doctor send him for a MRI of his sinuses. MRI showed Randy previously had 2 small strokes, which he was not aware of. With him being only 40 years old at the time, his Doctor ran tons of blood work and that is how they discovered the APS. She sent Randy to a Hemotologist, and she ran the APS tests again, 12 weeks later and confirmed that Randy was triple positive for APS. The Hemo put him on a full dose aspirin (in hindsight, I believe that wasn't enough) and in May 2019 Randy drove himself to the ER at CDH because he couldn't breath well. They immediately took him in to the ER and he had a pulse ox of 72. How he safely got himself to the ER, only God knows. They discovered clots in multiple organs, and both his lungs were hemorrhaging .... yes, clotting and hemorrhaging at the same time. He had Diffuse Alvelor Hemorrhaging along with his APS going catastrophic. The Specialists that were brought in my the ICU doctors were top notch. That is how we got Dr. Angelica Gierut his Rheumotologist, Randy had only been seeing the Hemotologist before his emergency. The Pulmonologist, Dr. McGee (just in case you ever need one, he is fantastic)told me that Randy had at best, about a 40% chance of survival. Because I am Randy's only family, well besides my 92 year old Mother (his Grandmother) I decided to stay in the ICU with him. He spent 3 weeks in CDH and another 4 weeks at MarianJoy for rehab. His lungs hemorrhaged again June 2019, and again early September 2019. Then 2 weeks later, mid September he had clots in both lungs and in his right arm. The pandemic scared us so much, especially as information came out about ICU and on ventilators and infiltrates in the lungs. It was exactly what Randy went through. Beyond blessed that Randy's boss has allowed him to work part time from home for the last year, and he's going to be released to full time hours in April, but still from home. He got his 1st Moderna shot 2 weeks ago today, so he'll be fully vaccinated in 2 weeks. I took my Mom for her 2nd Moderna shot yesterday, so we are hoping that by early May, my Mom can see Randy again. They haven't seen each other since Christmas 2019. I also have had my 1st shot of Moderna, a week ago yesterday, so I'm planning a nice celebration (for every holiday we've missed together) over the last15 months. My Mom and Dad (deceased) raised Randy since he was 6 months old, so it will be wonderful for my Mom to see him again. We have been Blessed.

[ChicagoCubs in reply to kiminabmw]

Oh wow!!! What a story!! Randy is a warrior. Curious - who is his hematologist? I just got my Moderna last week. The second shot will be April 21. I only had a sore arm, which is good. I am prepared to not feel great after the second dose. My husband ended up with a 104 temperature after his but totally fine 24 hours later. Randy seems to have 9 lives and very blessed to have an amazing team of doctors and family such as yourself.

I had a knee to pelvis DVT four years ago when living in the DC area. Random and out of the blue. I went for a run that morning and felt a pull behind my leg. I had sciatic pain for a few weeks leading up to it. I was hospitalized for a week and fortunate that the clot dissolved!!! It was a big one! The doctors asked how I knew it was a DVT when I came to the ER. I told them David Bloom. They were all younger than I and do not remember him from NBC news and how he died. It clearly left an impression on me- thank goodness!! I didn’t mess around. and told them what it was.

Hematologist at hospital told me it was the birth control pill and refused to do any labs. That angered me greatly. We moved here just four months later and I got a second opinion from Dr Kahn at NW in Warrenville. Brilliant man and so kind. He figured out to test me for this when I said we had twins on the autism spectrum. I guess APS can be a cause for this. It was a lot of absorb emotionally.

I am doing well, going to Orange Theory in Carol Stream 4-5 times a week. I am nowhere near the shape I was in before this happened but I am happy with being active as I am. I know it could be worse.

Wishing you a happy day! Thank you!

[kiminabmw]

WOW, that is a huge DVT, thankfully it dissolved. Randy's Hematologist is Dragana Tomic, her office is in Warrenville. She is also with North Western, and she goes to CDH.

[ChicagoCubs in reply to kiminabmw]

Sorry for the late reply. Thanks for the info on the hematologist. Best wishes for you and your nephew