Cleveland Clinic

[Christine1219]

My husband saw his rheumatologist yesterday and she wants him to travel to the Cleveland Clinic. I am not sure how we will afford this trip or if he will physically be able to make this trip.

What are your experiences with the Cleveland Clinic? What are good WG docs there?

Thanks in advance.

[Pete]

Hi Christine,

My experiences with Cleveland Clinic have been excellent. I highly recommend that you see Dr. Alexandra Villa Forte. At my first appointment, she spent almost two hours with my wife and me gathering my history, examining me, and having me tested (CBC, metabolic panel, ANCA, P-ANCA, C-reactive protein, sed rate, hepatic panel, and urinalysis). She and her colleagues are actively researching our disease and fine tuning their treatment protocols. When she wants to change meds, she explains why and how the change should be accomplished. When I first saw her, I had been on cytoxan (100-150 mg/day) for about 16 months. She said that was too long and changed me over to methotrexate (15 mg/week). She also kept me off all immunosuppressants for about two weeks until my system could clear the remaining cytoxan out before starting methotrexate. (I thought this was good because my previous doc had changed me from cytoxan to immuran without any transition period. This resulted in a major adverse drug interaction which precipitated pneumonia and put me out of commission, but not in hospital, for about a month.)

Others on this forum see Dr. Carol Langford, about whom I hear good things. There may be others. This practice sees over 700 of us weggies, so I think they know what they're doing.

As far as traveling to Cleveland is concerned, there is an Intercontinental Hotel on the Cleveland Clinic Campus. It's connected to the Crile Building (where the rheumys are) by a skywalk system. The Clinic is close to University Circle where there are several museums (if you're so inclined) and many restaurants and shops. The Clinic is on the east side of Cleveland (opposite side from Cleveland Airport which is on far southwest side). Cleveland RTA operates a train line that runs from the Airport and connects downtown to rail lines leading to the east side (probably not walking distance to the Clinic) and to a bus line that runs to the Clinic and University Hospital. There may be other accommodations nearby as well.

I've not experienced any of the housing and local transport accommodations as I live about a two-hour drive from Cleveland in suburban Columbus. If airfares to Cleveland are too high, you may want to consider flying into Akron-Canton (CAK). It's a little over an hour drive from the Clinic and has service from Delta, USAirways, and AirTran from east coast cities. The fares are generally lower since it's not a "fortress hub" for any airline (CLE is a United hub).

Hope this is helpful.

[Debbie C]

Hi Christine, I also go to the Clinic and I see Dr. Gary Hoffman there. He also spent about 2-3 hrs with me the first time and everytime I go back I am there a couple of hrs. First to see his "dr in training" then he comes in for about an hour.He is probably a better dr. than I am a patient!!! I have just found I can not tolerate these drugs so I am only taking 5 mg. of pred. ( Thank God ,it's been working ) I am in remission right now ,I have lung involvement and some sinus issues but nothing near as serious as some have it. Dr. Villa-Forte fills in for my dr. when he is not there and I have spoken to her a few times on the phone and she is very nice. There are alot of places to stay near the clinic and they also have shuttles for free that take you there. If you have any other questions just ask..they can usually get you in right away. Good Luck. Oh and once you see the dr. in Cleveland,they can always work with your dr so you won't have to keep making the trip. The first one is important. But I just noticed you live in CT...why can't you go to Boston,there are some very good drs. there ?

[Christine1219]

Debra, I was thinking of you today. I spoke to a woman with WG who said just what you said: "why can't you go to Boston?". She sees Dr. John Stone at UMASS General. It seems that a 2 hour 45 min car ride is much more reasonable than trying to get poor, sick hubby on a plane to Cleveland. She did frighten me when she said that the Docs here where we live know nothing about WG. She also said that Imuran (spelling?) does nothing. My husband just started that yesterday. I did ask her when she began to feel "right" again and her answer was consistent with all of yours on here at 5-6 months. Really pushing for my husband to start the SS Disability application process. He is being his usual stubborn self. Also pushing to sell our house and my parent's house and purchase one house where we can all live (with an in-law set-up for my parents). Again, he is resistant. I feel that he is in NO position to be resistant of all of us sacrificing so much to make things doable. Oh boy - not sure what is going to happen with us...

[windchime]

Dear Christine, It sounds like the reality of situation hasn't hit your husband yet. He thinks things will eventually get back to normal, but instead he will experience a new "normal" with limitations he didn't have before. Has he done much research on the disease? Perhaps you can print some pertinent articles for him to review. Good luck with the UMASS docs and I hope he will be able to make the trip. If he is real weak maybe going up the day before and spending the night would be helpful. Not as expensive as flying to Cleveland at any rate. Keep us posted.

[Debbie C]

Hi Christine,so did you google any of the drs. in Boston. I remember when I last saw my doc. at C.C., I had mentioned some research being done in another country with wg that was posted somewhere on here and he kinda got pissed off at me and said what some of the best hosps. for wg were and he mentioned Boston. Bost I can't remember if it was at the unversity of Boston, Boston Mass. or what, but just google reumys in the Boston area that deal with w.g. and see what comes up. You definately need to get your hubby moving on disability since it does take awhile.How is he feeling now adays ? What drugs his he on besides Imuran ? I took it for a couple of weeks but couldn't get used to it ...like all these other drugs. You might want to see if there is a good kidney dr. in your area,even if he doesn't have any involvement there,they can be the best drs. sometimes. I like mine here more then the dr. at C.C. and he is very familar with w.g. Good Luck and keep us posted....I hope he finds a good doc. soon

[lola24]

Hi there! I absolutely love the Cleveland Clinic!! I see Dr. Villa-Forte and she is absolutely wonderful and truly cares about her patients. I live in Michigan and it's about a 5 1/2 hour drive there and another 5 1/2 back. However, I have received the best treatment there. There was not one doctor in the state of Michigan who could diagnose or properly treat me. After 3 years of being extremely sick, in and out of hospitals, having multiple surgeries and nearing my own death, I was desperate for help and decided to go out of state to the Cleveland Clinic. After spending over three hours with me, I left there with a treatment plan and most of all, I left there with hope and confidence that my health was in the care of someone who is extremely knowledgeable about this disease. I would strongly recommend the Cleveland Clinic and this specific doctor with your husband's health care. Whatever you decide to do, I hope that your husband finds a good and caring doctor that meets all of his health care needs as he travels down his road to recovery. Good luck to you both and I wish you the best.

[Alysia]

Hi there! I absolutely love the Cleveland Clinic!! I see Dr. Villa-Forte and she is absolutely wonderful and truly cares about her patients. I live in Michigan and it's about a 5 1/2 hour drive there and another 5 1/2 back. However, I have received the best treatment there. There was not one doctor in the state of Michigan who could diagnose or properly treat me. After 3 years of being extremely sick, in and out of hospitals, having multiple surgeries and nearing my own death, I was desperate for help and decided to go out of state to the Cleveland Clinic. After spending over three hours with me, I left there with a treatment plan and most of all, I left there with hope and confidence that my health was in the care of someone who is extremely knowledgeable about this disease. I would strongly recommend the Cleveland Clinic and this specific doctor with your husband's health care. Whatever you decide to do, I hope that your husband finds a good and caring doctor that meets all of his health care needs as he travels down his road to recovery. Good luck to you both and I wish you the best.

welcome to the Forum, Lola if and when you feel like, you are invited to tell us more about you. (you can start new thread at the "new members introduction").

[mmthomm]

Hi all,
My rheumatologist has raised the possibility of sending me to Cleveland Clinic for further evaluation and confirmation of the current treatment plan (15 mg prednisone, Methotrexate, and RTX every 6 months after my initial 4 doses in December 2013). I was diagnosed with Wegener's in November 2013 and I have a lot of intracranial involvement - severe dural thickening, inflammatory mass extending to skull base and cerebellum, and a couple of blood clots just to make things more exciting. I know a lot of people on the forum recommend Dr. Villa-Forte but I'm curious if anyone is aware of other docs at Cleveland who work more specifically with WG patients with cranial involvement - I still have daily head pain, hearing loss, and balance issues related to the mass effect in my head. Supposedly I'm in medically induced remission but I feel like I'm teetering on the edge of a flare as my CRP has been rising recently as my prednisone dose has been decreasing. Any recommendations would be greatly appreciated!

[Debbie C]

I am sorry you are going thru such a bad time with this. I go the Clinic and see Dr. Gary Hoffman,he is a rheumy but it sounds to me that you also may need to see a neurologist. Maybe you can make in appt. to see them both the same day. Good luck and keep us updated .