Reccommendations?

OK... until recently I have been really happy with the care I've gotten from my Rhumey and Pulmy. NOT so happy with Rhumey lately. As many of you know I have to discontinue Cytoxan in early December because it attacked my bladder.

Rhumey trying to get me approved for Rituxin (long story, most of you know it... not happening right now). So... we've doubled the Pred (back to 15mg since discontinuing Cytoxan).

I feel pretty much like I've been hung out to dry at this point. Rhumey doesn't seem concerned about keeping up with bloodwork and until December problems we were doing blood every 2 weeks. I was feeling pretty good before the problems cropped up, but now feel the back-slide. Getting the fatigue again, joint pain, headache, low back pain, cough (treated with antibiotics by GP for resp and sinus infection about 10 days ago). While there I TOLD GP we were going to do CBC and forward to Rhumey. At this point I don't know if Rhumey just doesn't know what to do, or is just ignoring me and my disease. I've been fighting this for almost a year and felt we were closing in on 'remission'. I don't want to end up extremely ill again and having to start over. I've lost half my hair, my career, most of my froiends... was it all for nothing? Feels like it at this point.

I'm pissed, frustrated, depressed... I talked to hubby last night and we decided it's time to look for a specialist. I got on the VF website this morning and found Dr. Stephen Capizzi in Nashville. It's only about 175 miles from me... I can't really afford to travel right now, nor do I feel up to it, especially since depending on the appt time it may end up being an overnight trip. But at this point I feel like I have to do this. *this revelation should please Sangye :) *

I feel safe telling you folks here that part of me is ready to just throw away all the meds, stick my head in the sand and ignore everything... letting whatever happens happen. I know this isn't rational, I'm just so frustrated, and the doubling of the Pred isn't helping. I'm all emotional again. I spent most of yesterday and so far all of this morning in tears.

Anyway... the point of all this rambling... has anyone seen Dr Capizzi, or heard anything about him? I'd like some info from a patient before I call and try to get in to see him.

Oh MissKay, I'm so sorry. I've been there with a rheumy who ignored me and let my care dissolve away. And I've definitely been to the "I give up, let nature take its course" place. Both are so difficult. Isn't it incredible though, that even in such depth of sadness that your inner spirit says "I want to live" and you seek out a VF doc's help? Good for you. Hang on to that little voice that says you deserve better and that it isn't hopeless. Keep reminding yourself that the pred is contributing greatly to your depression and tell it to shut up and sit down.

Your efforts haven't been wasted. All that treatment has kept you alive! You don't necessarily have to start over, but you do have to get to a new doc asap. Your symptoms are very concerning. As far as finances, can your remaining friends help with a fundraiser? Even something quick and easy like a bake sale can pay for gas and hotel.

Hugs to you, my friend. I would go through another flare to spare you this suffering. :hug2:

Misskay, I am thrilled you are going for a second opinion and you deserve the best! I have not heard of Dr Capizzi. Are you closer to Mayo,MInnesota or Cleveland Clinic....I would go to the top vasculitis centers if you can. Maybe someone on this forum know the doctor your talking about. Thanks for being open and sharing your story, big hug to you.:hug3:

Thanks guys...
Sangye... I wouldn't feel comfortable asking friends for help. I'm not wired that way... I have a hard time even asking hubby to do anything for me. Right after diagnosis I lay in bed all day dying of thirst. I was too weak to get up and refill my water glass, and didn't want to bother hubs with it. I'm working on this... and hopefully I'll get better.
Elephant... I am in East TN, and Dr. Capizzi is in Nashville. Mayo and Cleveland are a LOT further than I can manage at this point. Physically and financially. But Dr. Capizzi is listed on the VF website, so I'm going on the assumption he knows what's what... he's about 175 miles away. The nearest other docs are in North Carolina, about twice that distance.
Hopefully someone will come along who has seen him or heard of him. Thanks again.

MissKay, no one is wired to ask for help easily. It's difficult for everyone. No one wants to feel dependent. I could never ask for help but when I got sick and was completely unable to do anything myself, it became clear that my old habit had to break. It's pride-based and there is no good use for it. It alienates others as no one can get through that kind of wall. It also keeps others in a state of constant worry about you, since they know you won't ask for help even if you need it. Finally someone bopped me on the head with all that and also told me, "You love to help others and it makes you feel good, so why would you deny that to others?" Even now it's a constant effort to break this habit but I'm determined. Please consider this. Is it worth your health and possibly your life to avoid asking for help?

Hey Misskay,

What a bummer. I'm so sorry to hear what you're going through, as if dealing with this crappy disease on it's own isn't enough. Sometimes I just want to pummel some of these docs. There are some great ones but man are there some shitty ones out there. I just did a search on Dr. Capizzi, and there isn't much out there, but there is one survey filled out about him (no comments though) - you can see it here. Stephen A. Capizzi, MD He's also listed as an internal med doc - and for some reason in my mind that's better. My ENT told me on my last visit (I think it was his way of appologizing to me about missing the boat at the start) that the internal med docs are the 'thinkers' of the medical profession. By the looks of it he also went to Mayo Graduate School, so looking good. Also started college in 1988, so he's probably in his early 40's (a good age for a doc you want to be with you for a long time). Hope this helps a little. Feel better. :hug2:

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Originally Posted by misskay

Thanks guys...
Sangye... I wouldn't feel comfortable asking friends for help. I'm not wired that way... I have a hard time even asking hubby to do anything for me. Right after diagnosis I lay in bed all day dying of thirst. I was too weak to get up and refill my water glass, and didn't want to bother hubs with it. I'm working on this... and hopefully I'll get better.
Elephant... I am in East TN, and Dr. Capizzi is in Nashville. Mayo and Cleveland are a LOT further than I can manage at this point. Physically and financially. But Dr. Capizzi is listed on the VF website, so I'm going on the assumption he knows what's what... he's about 175 miles away. The nearest other docs are in North Carolina, about twice that distance.
Hopefully someone will come along who has seen him or heard of him. Thanks again.

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My guess is that your husband would be really upset with you to hear this. Let us assume he cares about you, worries about your health, and wonders what he can do to help you feel better and then you won't even ask him for a glass of water. I think that would really hurt him. So think about his feelings if you care about him and ask him for help and share ideas on what he can do to help you deal with Wegener's disease. I think many of us have had the feeling about giving up but it is hard to quit when many people that care about you are cheering you on. The disease is certainly not a fun trip, but I think it is often harder on the family than us. I understand your reason for selecting the closest doctor and think it is very valid. He may turn out (hopefully) to be very good and the the close distance should certainly make him a lot more accessible. Go for it and good luck in getting treatment to help you feel better.

Please hang in there and get the help you need. It took a lot for me to finally plug into the Mayo. I didn't think I had the physical endurance to come down here, but with the help of my wife I did. Then to have a one hour consult turn into five straight days of testing was tough to take, but now I am getting the help and answers I need. Now that the bleeds in my colon have been cauterized I no longer have terrible abdominal pain and cramping. That alone was worth the trip.

Please don't give up. We are all there with you in spirit.

Thanks everyone... and I HAVE gotten better about asking for help, at least from Hubby.
Just got some news. The drug company that makes Rituxan (Genentech) just called. I have been tentatively, temporarily approved to recieve the med for free directly from them. They will ship 4-5 doses to my doctor within the next week or so. I have to fax them some financial documents this afternoon so they can formally approve things. But at least it's progress :)

I still plan on seeing Dr. Capizzi as soon as I am able. Waiting for a call back from them now. But if the drug company is shipping the drugs to the Rhumey, I guess I gotta dance with the one that brung me for now rather than get things all snafued by changing docs in midstream... but just because I'm at the dance with my current doc doesn't mean I can't sneak in a dance ir 2 with the expert... for my own peace of mind if nothing else...

So for now, I've dried my tears to the best of my ability (Gawd I HATE Pred).... thanks for letting me rant, rave, and sit on the pity pot for a few hours gang ;)

Glad you got the medicine. Keep us updated. We are all here for you!

Yahoo for getting rtx! I think your plan to continue on and see Dr Capizzi is great. :thumbsup:

Our daughters rheumy is also on the VF website-Nancy Allen @ Duke. Our daughter wanted a specialist somewhere close that she could drive due to time constraints & cost. We liked Dr Allen very much & she has seen many , many, more wg patients than the local drs. She also was involved w/ the study on Rtx which was another reason we chose her. I hope that your decision works out as well for you. The news abt. RTX is wonderful news -congrats! Keep on dancing & I hope you soon find peace of mind...

I considered Dr Allen, but she's about 375 miles from me... if I can't get in to see Dr Capizzi in Nashville, Dr Allen is next on my list :)

Hopefully some time next week I'll hear from my Rhumeys office, the drug company said they would be shipping out 4-5 doses of the Rxt to them asap, even though I have not been officially approved for the free drugs, only tentatively approved.

On another note... the bladder issue is cropping it's ugly head again. Started having discomfort and the other symptoms about 4am Saturday morning, so immediately started taking the meds the Urologist gave me last time. Hopefully we can nip it in the bud this time and not have to suffer for nearly a month like last time. Already had a follow-up appt set with the Uruologist for this coming Tuesday morning... thought about cancelling it last week as I thought the problem was resolved. Good thing I didn't :/

Sorry to hear about the bladder pain coming back... Are you still on ctx?

no... haven't been on ctx since Dec 14th... that's why when things finally straightened out between Christmas and New Years I thought the problem was resolved and I wouldn't have to worry about it anymore. I'm stumped as to why it's coming back. I'm scrutinizing my diet from the past week to see if there was anything unusual or really acidic that might have triggered it in an already sensitive bladder.

I'm so glad you have that appt on Tuesday...

Hello Misskay,
I love your expression, "I got to dance with the one that brung me,"!! Such an apt metaphor, BUT you are not at a dance :wink1: My daughter and I practice great diplomacy negotiating between her 'local' rheumy, and her VF expert, all the time. The good news is these doctors did not ask you out on the date, you asked them. We need to remember, they get paid for their service and expertise. It is an expensive service, and just like any business, one can build a good, healthy, keen working relationship, and keep things on a business level at the same time. This is not personal to anyone but you. My daughter was able to receive Rituxin from Genetec for a period of time. Her first infusion was at Mayo, and the additional infusions (even the subsequent three in the induction phase,) were administered by her previously reluctant local rheumy.

And don't forget, we are all here to bully up for you. It is possible to state what your expectations are (needs,) and do so in a positve way that invites a cooperative relationship....much confidence and many hugs to you over cyberspace! (PS, pred is misery sitting on the back of strength)

Wow, Palmyra, that was so well stated. Would you consider adding it to this thread: http://www.wegeners-granulomatosis.c...need-know.html

As we know all too well, too many newly diagnosed stay with docs who are not adequately skilled because they were the one who dx'ed them, or because they've finally established rapport.

Glad you got the medicine, Miss Kay.

I think Tim from Mississippi (I think it's Corinth, maybe you can do a search), sees or has seen the doc you are talking about. I know that he got really sick with WG before it was all diagnosed. Hopefully you can PM him and ask some questions.

Marta -- it's funny that you say that internists are the 'thinkers' of medicine, because that's exactly what the rheumys and the infectious disease (think House) docs say about themselves. They say that internists are just generalists that you go to when you have a cold or need a physical (of course it's more than that!). Rheum is known (at least in this country) as one of the more cerebral medical specialties. That's why it's so surprising to me when I hear how some of you have been treated -- my rheumy is the guy who is always telling you about the latest study, or really thinking about how to treat you. None of this, "well this is the way I've always done it" stuff.

Internists are GPs so they see the full gamut of conditions and have to figure out which they can treat and which need to go to which specialist. They are generalists, but it means they are able to treat a wide variety of conditions and they "generally" look at the whole body instead of one piece. (I put that in quotations because financial pressures and insurance issues are forcing them to treat one condition at a time and ignore the entire person) There are lousy internists who can only be trusted to treat simple infections.

Rheumys have the reputation of being thinkers because they get all the patients no one else can figure out. AI diseases are all quite sneaky. Wegs is more sneaky than most. AI diseases have many overlapping symptoms and you can even have overlapping AI diseases. There are lousy rheumys out there who specialize in a few of the more straightforward conditions like RA. Once it's dx'ed, it's not rocket science to treat. It's easy to stay on top of the research by reading a few papers a year. For Wegs you need a rocket scientist. :biggrin1:

I have an appt with Dr. Capizzi in one week and I'm very much looking forward to it. I've had lots of issues with my local rheumy and havent been able to stay out of the hospital for a week at a time since dx.

omg... please, please, please let me know what you think of him!
On another note, saw the Urologist today as planned. The urine is better, only a trace of blood, and no proteins this time. Said the inside of my bladder still looked awful. He said it was one of the worst he's seen without it ending in a full-blown hemmorage. No wonder it hurt! During the worst of it before Christmas I was actually passing tissue along with the blood. He told me to continue to do what I am doing, and to take the meds he gave me as I feel I need them, and that if I need any refills on anything, or a RX for the samples he keeps loading me up with to just give him a call and he'd call the pharmacy asap.

I'm so glad you saw him. Gosh, it just sounds awful. I hope it heals up quickly. :sad:

Wow, that description of you bladder made me so sad. Hope your bladder behaves and gets back to normal soon. take care.

I ended up being unable to keep my appt. with Capizzi due to being hospitalized at the time of the appt. My local hospital tried to get my transferred to Nashville so that I could see him while in the hospital but Vandy was full and I needed a bigger hospital asap. I ended up in St Louis at Barnes where they almost immediately started me on Rituxan. Did you ever go to see him?