OHIO Female WG Patient, being treated through Cleveland Clinic with Rituximab

[Sjap0655]

Hello everyone!

My journey to diagnosis started with sinus congestion. While pregnant in Jan of 2013, I started experiencing shortness of breathe which my OB contributed to pregnancy sinuses. I was told to use a netti pot and after a couple visits to the ER was even given a nubulizer treatment. After not getting relief from those treatments, I telephoned my OB again and she insisted I meet her at the hospital for a better evaluation. At the hospital they started running test to determine what could cause this otherwise very healthy 35 year old who had just run a half marathan to become what appears to be asthmatic or to have breathing problems. After being seen by a pulmonary and ENT, and the results of my blood work, I was told that I had sub glottic stenosis which was causing my airway to narrow and restrict my breathing. They immediately started me on an IV dose of steroids (dexamethosone) and I saw immediate improvement with breathing. I was 6 months pregnant at that time and they said there wasn't any additional treatment for me until after the baby was delivered. Funny how that was said, because two weeks later, my water broke and I was put on hospital bed rest for another two weeks before my little baby was born, almost 3 months early. After his birth, my WG's was being managed by my pulmonary doctor who had some experience with WG's. He referred me to a Rhuemy, who had never had a patients with WG's and had printed me an up to date report and prescribed me CTX oral dose with no additional help or assistance about management of the disease. Not confident in the care, I decided to seek help at the Cleveland Clinic where they have a Vasculitis Center and care for people with WGs. My doctor, Dr. Gota was very knowledgeable about the disease and has been following me since. My time line goes something like, April 2013 saw 1st Rhuemy, prescribed CTX, May 2013 saw Dr. Gota Cleveland Clinic, they revised my meds to methotrexate and prednisone on a taper and I was feeling much better. June and July I had no symptoms or flare ups, August 2013 I had side flank pain and told my doctor about it and she sent me for blood workup and X-ray, from there they found a renal cyst and some inflammation on the right kidney. I had a kidney biopsy to confirm WG's flare in September 2013 and I am now on a Rutiximab, methotrexate, folic, prednisone and protonix. The flare was caught very early, THANK GOD and I still have full function of both kidneys. We are now working to manage my lesions of inflammation on the kidneys and get this WG into full remission.

I was wondering if there are any other people being seen by Cleveland Clinic on this site and if so is there a support group for people in OH. Also I was wondering how many other WG patients are being treated with RTX ( rutixan or rutiximab) and what has been the success of your treatments.

For any women, are any of you considering having kids in the future and/or how has WG affected your pregnancy.

Looking forward to making new friends and having someone to talk to about this new way of life.

SMJ

[pberggren1]

You can't do much better than the Cleveland Clinic. Welcome to the family. There are many women that have had very successful pregnancies after Wegs.

[Pete]

Hello from Columbus! There are several Buckeyes on this forum who have our disease managed by Cleveland Clinic docs. Your doc is new to me. I see Dr Alexandra Villa Forte, and she's excellent. Other docs mentioned favorably are Dr Carol Langford and Dr Gary Hoffman.

There is no face-to-face support group in Ohio that I know of. A few of us who live in The Columbus area are thinking about getting together sometime in the next few weeks. Let me know if you'd like to be included.

I'm in the early stages of a flare just now. I'll get my first rituxin infusion on 10/16. Was off pred for six months until the flare symptoms became obvious. Back on 60 mg of pred plus mtx, folic acid, and bactrim.

Hope you improve quickly.

[Sjap0655]

Yes, I would like to be included in the Columbus meeting! I am in Circleville, OH! Wow!!!! This is great news! I was starting to feel alone out here! I have heard of Doctor Villa Forte, he wrote a paper on renal mass for WG patient and they thought that was what I had but it wasn't. I hope your flare is treated promptly and you start to feel better! I am on the same drugs you are taking Pete. I think I forgot to mention the double strength bacterim in my post. :thumbup: Sound like we are in good hands, which make me feel a little better! THanks for the reply guys!

[rebekah]

Welcome to the group. Sorry you had to join us, but this forum is full of so much information and wonderful people. It sounds like you are in good hands being treated at the Cleveland Clinic. I just moved to Columbus a month ago from Florida for better doctors and am seeing docs at OSU. I was diagnosed in January 2012 and was put on Cytoxan for 6 months. When I flared earlier this year I did the Rituxan infusions in March (1 a week for 4 weeks) and that helped with my symptoms. I just had another round of Rituxan again in September with my flare. Other than the extreme fatigue I have for a day or two after the infusions I had no other side effects from it and prefer Rituxan over Cytoxan. I began to see improvement about 2-3 months after the infusions. I'm currently on 50mg pred, 150mg imuran, and bactrim. I'm sure most people don't flare as often as I have, but I had doctors in Florida that had no experience in treating WG, thus the reason for my move to Ohio. I'm sure with the care you are getting you will start to feel better soon.

Like Phil said, there have been several people on here that have had kids. You can do a quick search in the search bar at the top of the page and you can read their stories.


I hope you feel better soon! :)

[Sjap0655]

Can anyone from Ohio recommend a close rheumatologist for when I can't get to Cleveland? Also if you have had an infusion where have you gotten it done in the Columbus area? Right now, I am traveling back and forth to Cleveland but would also like to identify resources close for short notice or emergency situations.

[Debbie C]

Hi there, I live in Youngstown, Ohio but I don't know where Circleville is ? I also go to the Clinic, I actually have an appt. Tues. but I'm going up tomorrow to hang out for a day. I see Dr. Gary Hoffman there. Right now they say I am in remission and currently just taking 5 mg. pred. You need to make sure you get a good kidney dr. since it looks like it has gone there. Was there anything different on your bloodwork to show wg had affected them? I just had a ct scan of my abdomen and they said I had 8 hounsfield units..mostly likly benign :confused1: I have no idea what that is, I tried to google it but it didn't say much. My bloodwork came back good so I'll ask him what it is. My involvement is mostly in my lungs. I get nodules that come and go. But glad you found our "family" here and keep us posted and ask anything. I think we know more than most the docs. we see !! And congrats on the new baby, I hope he/she is doing well. Take care !!!

[Pete]

I don't have a local rheumy. My nephrologist (Dr Udayan Bhatt) was on the OSU team who diagnosed me, and he is on board with Dr Villa Forte.

I'm getting rtx at OSU Care Point East just off I-670 at Leonard Ave. Nephrologist is overseeing it.

[rebekah]

I just responded to your PM. I see Dr. Stacy Ardoin and really like her. She is with Ohio State and I see her at OSU Carepoint East. There are infusion clinics at OSU Carepoint East and at Martha Morehouse on the OSU campus.

[annekat]

Welcome to the forum! I see you are getting lots of support from fellow Ohioans. That is great. I'm way west in Washington state but just want to say you have come to the right place for all kinds of info about Wegs, and friendship and support from a group of very special people. I discovered this forum right before official diagnosis, and cringe to think what my life since then would have been like without it. We don't have the Wegs specialists you do there in Ohio, and I know more than my doctor about many aspects of having the disease. From what I've learned here, I feel so much more confident about evaluating my treatment and my progress, which has been good. With such an unpredictable disease, I feel so much safer with the forum as such a big part of my life. Please keep us posted and share or ask anything you like; you are sure to get a response from the caring people here.

[Alysia]

Hi,
welcome to the forum. It seems that you are in good hands and that you are going to be o.k.
rtx is a miracle. I wrote a thread about how much it helps me.
how is your baby doing ? it was prob so hard for both of you to start his life like that ...

[Jaha]

Welcome aboard,to the most helpful place for our kind there is! I'm a fellow ohioan, I probably live about an hour an half south of Circleville. I have gone to CC for the last 3yrs and see Dr Villa-Forte. I was just up there last week on Thursday and Friday. Dr Forte gave me a program on fibromyalgia management that Dr. Gota is a part of, and I will be contacting the group to be evaluated by them. I have had rtx treaments twice now and had another round scheduled for Oct 24th at CC, after having my ct scan of the lungs, everything is stablizing with the Wegs and the COPD, so we decided to not do the rtx now and work on the pain management of FM. I do believe the rtx has helped more than anything including the ctx, and I've been on all of them. Good luck to you with your txs. I go to Chillicothe when feeling good shopping, maybe we could meet sometime in Chilli.

[Debbie C]

Well I just came back from the Clinic and had to wait over 2 hours to get into the drs. office and then another hour to see him,never had to do that before. But he was very happy with everything,said my bloodwork was picture perfect and I should hang it up and put "gold stars" on it. I ask him again about getting off pred. And he said I would have a chance of coming out of remisssion but also said that I could at any point so if I wanted to try it he would wean me down 1 mg at a time for two weeks.It's funny I've wanted off this so much but now I'm afraid if I come off everything I could get worse.:w00t: I did get a flu shot and a pnuenomia shot today. But now I need to decide if I want to take the chance on being drug-free:confused:

[aewaustin]

I also have kidney involvement and have been to Cleveland, amazing place. My doc in Austin has a relationship with the doc in Cleveland, it works great that they have a team approach and I would suggest trying to get that going with someone locally. Getting the infusions locally is so much easier. Also I have been through RTX and CTX and the results are just so individual. After a round of RTX I did great but then three months later I had to start CTX. I had the benefit of going through this 20 years before so I knew CTX would work and with that I would just be done instead of fiddling with RTX. This disease is all about learning what is right for you...

I wish you the best of luck!

[Sjap0655]

I'm in Cleveland getting my 2nd RTX treatment. Thanks for all your advise everyone!!

[Debbie C]

I also have kidney involvement and have been to Cleveland, amazing place. My doc in Austin has a relationship with the doc in Cleveland, it works great that they have a team approach and I would suggest trying to get that going with someone locally. Getting the infusions locally is so much easier. Also I have been through RTX and CTX and the results are just so individual. After a round of RTX I did great but then three months later I had to start CTX. I had the benefit of going through this 20 years before so I knew CTX would work and with that I would just be done instead of fiddling with RTX. This disease is all about learning what is right for you...

I wish you the best of luck!

I was just wondering if you have had this for 20 years ,has there ever been I time when you were drug-free

[aewaustin]

Debra C - You will be happy to hear that I was drug free for most of that time. I was on chemo from 1992-94 (CTX), and 2011-2013 (CTX and RTX) and I am still on Imuran. And in 2004 I was on drugs for Wegs, but not on chemo. When mine hits it seems to hit really hard, with kidney involvement and all kinds of other issues, so they hit hit hard and it seems to go into remission.

I was 100% drug free from 1994-2010, except for that time in 2004. I was totally healthy and from 2008-2010 did two Ironman triathlons, a marathon, and six half Ironmans. My favorite quote to deal with this is "This too shall pass" because it all does... :)

[Debbie C]

That is good to know,since my dr. is letting me wean off pred.,I will be on nothing and from what everyone says..you need to be on something. So I have not started to wean back yet, I'm afraid if I do something will start up. But I guess I won't know until I try.
:scared:
Wow you really were at the top of your game for a couple of years there. Are just taking Imuran now or preds also ?
What kind of flare up diod you have that you had to be put back on ?

[Sjap0655]

Debra C - You will be happy to hear that I was drug free for most of that time. I was on chemo from 1992-94 (CTX), and 2011-2013 (CTX and RTX) and I am still on Imuran. And in 2004 I was on drugs for Wegs, but not on chemo. When mine hits it seems to hit really hard, with kidney involvement and all kinds of other issues, so they hit hit hard and it seems to go into remission.

I was 100% drug free from 1994-2010, except for that time in 2004. I was totally healthy and from 2008-2010 did two Ironman triathlons, a marathon, and six half Ironmans. My favorite quote to deal with this is "This too shall pass" because it all does... :)





wow!! This gives me great motivation to start back training for marathon. I have responded well to treatment thus far and will continue my blood test to monitor my progress. But in the meantime I plan to start my couch to marathon training. I haven't ran in over a year so getting back into it is gonna take strength and conditioning, eating well and mental strength.

If u have any tips to share in workouts diets and etc feel free to inbox. I'd love to keep in touch!
Sheila

[aewaustin]

Debra - I am now on Imuran and my doctor seems to think this is a long term plan for me, I am not so sure, but that decision is a year or two off. I have been off of prednisone for about a year now.

Sheila - Sounds like you have a great plan! I have had a hard time coming back because of injuries so I very much suggest weight training and doing a walk/run mix. Right now I am doing 2 minute run / 2 minute walk. I am also a huge fan of doing heart rate monitor training, it really helps to reduce injuries. Also am eating mostly Paleo, and there is a thread on here about that. Below are links that I hope you find helpful, and good luck!

(Lets not hijack this thread, if you have other questions just start a thread or just email me)
http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3397-what-i-wish-i-had-known-two-years-ago-paleo-gluten-free-topic-3.html#post74138

http://www.marathonguide.com/training/articles/heartmonitortraining.cfm (http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3397-what-i-wish-i-had-known-two-years-ago-paleo-gluten-free-topic-3.html#post74138)

[Sjap0655]

I had another question, if you are treated with rTX, does your doctor have you do urine dipstick test at home? My doctor told me to do them to monitor protein and blood in the urine. My question, is how long before you start to see no blood, or protein in urine after reviving RTX? Or a better question is how long before your labs, urine blood work results came back normal?

[aewaustin]

Sjap0655 - I started full blown issues in 12/2010 and have been through 3 rounds of RTX and 6 months of CTX. My kidneys have been very involved and I still have 1+ blood, but we don't really worry about it anymore. I highly recommend that you get in with a kidney doctor that can "spin" the urine and then look at it under a microscope, it is much more telling than the normal lab test. We use the normal UA for a guide but then when we really want to know I go to the kidney doc and/or do a 24 hour urine.

My doc never recommended the dipstick, but I did it on my own. Now I can tell by the way it looks and I don't bother with them anymore. Be sure to get rid of them when they expire because then they become inaccurate.

[Sjap0655]

Aweaustin _Thanks for your response. Thank goodness, I do have a nephrologist and a Rheumy that I see up at Cleveland Clinic. I'm in a sort of weird situation with my kidney involvement as it concerns WGs. My kidney's were never damaged from a laboratory standpoint. A lesson, (inflammation spot) on top of one of them was found during a Ultrasound and CT scan. It was thought to be a simple cyst but my docs examed and biopsied it and saw some neuphrils or wg action.

My kidney function test all came back after treatment within a normal range- no protein detected; no red blood cast etc. But its my home dipstick that said I had trace amount of protein on it that made me wonder. I too have had blood in the urine on my dipstick and my RHemy said they are not concerned with it.

For monitoring, I go every (2) weeks for workup; CRP, SED; WBC, RDC, Urine etc and labs are reviewed by my docs to ensure i'm making progress.

I will follow up with Neph and Rhemy in November. But I just was curious how others go about monitoring and whether the results they are getting on those dipsticks vary, improve or provide accurate window vs the hospital blood work.

Sheila