Failed Treatment?

[Christine1219]

I posted yesterday about my husband's dizziness, double vision, blurred vision, and balance. He was in the ER yesterday and they admitted him. The MRI showed what they are calling a small stroke. The doctors were in a 3 hour conference about what to do. He was diagnosed November 19, 2013. He has had the 4 Rituxan infusions, the prednisone, methotrexate, etc. All the standards for WG. Today they said that they think the treatment failed. They are calling it a relapse, but how can he relapse if he never went into remission. He REALLY needs to see a WG specialist in Cleveland or Boston. He needs to see someone who knows WG! So, they are increasing his prednisone and starting him on oral cytoxin. Has anyone ever heard of symptoms worsening after full treatment? What can we do? Help! This is beyond scary...

[Pete]

I hope you can get your hubby into Boston or Cleveland soon. They should be able to figure things out. Having said that, the rituximab does take several weeks (I've been told 4-6.) before it takes full effect.

Good luck!

[whatthewhat]

I'm sorry, Christine; I am sure that would be so disappointing & scary. I have not read of treatments "failing" - and Pete is totally right that it takes a few months for rtx to kick in. I also urge you to get him to a facility that *knows* Wgs. ((hugs))

[Christine1219]

Hi Pete,

He has to go to Yale for Pulmonary Function Tests before his rheumatologist will give him a referral to Boston or Cleveland. And although it takes the Rituximab the 4-6 weeks to take effect, we were told that he shouldn't have new symptoms and worsening symptoms. And he has definitely gotten worse.

[Debbie C]

Christine, I can't say for sure because I don't remember but I don't think you need a referral to go to C.C. and you might want to call Boston and check with them. I don't understand why your rheuny is insisting on a PFT after having a stroke.It is clear they do not know what to do next. I am sorry you and your hubby are going through this. If your rheumy won't give you a referral ( if you need one ) will any of your other docs. He definately needs an expert. I'm wondering if this stroke is a result of the treatment. I am sending you prayers and hugs your way and hope the rtx will kick in and he will start to feel a bit better soon. :hug2:

[khaisley]

Christine, I just called CC and made an appointment, I did not need a referral. When we went to my hubbys Rheumy yesterday, we told her we made and appointment and she was actually pleased we did because she was going to suggest we go there because he doesn't have a spleen. Sounds to me like your Rheumy is afraid to release the reins. PJ's GP wanted him to go to a GI specialist too because he thougth it was GERD...I told PJ, we are not wasting money on the GI its not GERD. You know your hubby best, I hate it when some doctors think they know it all and spouses are "over reacting". I pray your hubby gets the appropriate treatment soon...time does matter with this disease..are you closer to Boston? I pray for you too...even though we are not the ones with WG...we have to watch our husbands go through this. Be strong and be his advocate.

[Jaha]

Christine,
I totally agree with Debra it really could be the treatments that could be causing these problems,everyone reacts differently
To these treatments. I'm not a Dr. But rtx aluone has many since effects. The drs there. Should at least try to get a phone consult with
With a wegs Dr at either cc or Boston. my thoughts and prayers are with you and your husband.
I hope everything improves asap.













ree with debra

[Allisonquast]

I agree time does matter with this disease and it's all so new to these docs, they are only human and cannot possibly know everything ! You have to get the answers you need, don't stop questioning until you are convinced! It's not like any other disease.

[pberggren1]

I relapsed within a month after 6 months of ctx once so it is possible. And yes, you need to go to Boston or Cleveland to see the top docs. What city are you at in CT?

[Christine1219]

We are in Trumbull, CT. So, Boston is much closer for us. The Rheumatologist doesn't think there is anything in NY.

[Debbie C]

I think Phil Knows of docs. in Ny. Phil knows where all the good docs. are ! I don't think your rheumy knows too much....find another one SOON !

[JeanMarie]

I have no medical training at all but it's hard for me to believe that a rheumy in Conn has not heard of the Hospital for Special Surgery in NY. One of the best hospitals for rheumatology in the US. Dr Robert Spiera has many, many Wegs patients. He is a Vasculitis foundation consultant & among other things the director of the Vasculitis & Scleradoma dept at the hospital. ( I have seen him for second opinions) The hospital surely has other experienced vasculitis docs as well. The main number at the hospital is: 212.606.1000.
My prayers continue for you & your husband.

[mishb]

Good job Jean Marie :thumbsup:

I can't answer threads like this, being from Australia, but it's wonderful when I see someone give a complete response with names and even numbers

Best of luck to you and your husband Christine.

[drz]

Boston also had one of the world's finest Weg experts till he moved to Philly but surely some of his colleagues must still remain in Boston.

Meet the Researcher: Peter A. Merkel, MD, MPH Chief of Rheumatology at the University of Pennsylvania - Churg Strauss Syndrome - Vasculitis - Pub Med - (http://www.cssassociation.org/news-events-reader/items/meet-the-researcher-peter-a-merkel-md-mph-chief-of-rheumatology-at-the-university-of-pennsylvania.html)

[LillysMom]

I'm wondering how the doctors know if the 'treatment failed' or if he would have had more rapid symptoms without them. Our daughter never went into a complete and real remission I don't think. In our experience she was treated per her symptoms, and when she had an obvious 'flare' then Drs. would increase medications enough to treat symptoms. Being raised in Mass, my father frequented drs. and hospitals in Boston for 7 years with cancers. Some of the best drs. are there. Begin by getting lists of rheumatologists in Boston, phone each and find out how familiar each is with wegeners. You should be able to tell after a few calls if they or their staff 'hesitate' or are really on top of the disease. Perhaps you can also use the computer and search rheumatologists in Boston area. When my daughter was diagnosed most doctors had never even heard of Wegeners! Now at least many have treated Wegeners patients. Right now Lilly is looking up a couple of things on the internet. I have some ideas too, will let you know anything we find. Don't panic!
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[LillysMom]

Wow! We hit the jackpot I think! The internet may be your future best friend. I put in the Search engine "Wegeners Disease Doctors in Boston." And I am going to post what I found. Then you can also search same Search I did. I did not go to this site, thought I would just give it to you:

Best hospitals for Wegener's Granulomatosis (http://wegenersdisease.org/Wegeners_hospitals.html)
wegenersdisease.org/Wegeners_hospitals.html Cached
(http://search.yahoo.com/r/_ylt=A0oG7nBIxuVSQCcA_TpXNyoA/SIG=1bngq3u6q/EXP=1390819016/**http%3a//72.30.186.176/search/srpcache%3fei=UTF-8%26p=Wegeners%2bDisease%2bspecialists%2bin%2bBost on%26type=2button%26fr=ush-mailn_02%26u=http%3a//cc.bingj.com/cache.aspx%3fq=Wegeners%2bDisease%2bspecialists%2b in%2bBoston%26d=4565770561913666%26mkt=en-US%26setlang=en-US%26w=R4418cO0MIccRZ71PAMD8iIcoHDw6ofs%26icp=1%26 .intl=us%26sig=JkWOP1EVmDrOFNVA4ZYZyQ--)Wegener's Disease doctors, ... Here you will find the Latest Wegener's Granulomatosis and vasculitis news and events. ... Boston, Massachusetts.

Tell us what you find out.
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[Alysia]

Hi,
I think that it is too early to decide if the treatment failed or not. not enough time had passed to make the rtx work. besides, sometimes there is a need for about 2 rounds of rtx, 6 months between them, to see changes and healing.
I hope your husband is getting better each day. I send my prayers to you. please continue to write. stay strong. we are all with you.

[renidrag]

Dr. Paul Monach, Boston University Hospital and Boston Medical Center head of Rheumatology, wonderful man. You need to call and go.
1-617-638-7460