User Tag List

Likes Likes:  14
Results 1 to 9 of 9

Thread: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

  1. #1
    Join Date
    Oct 2017
    Posts
    9
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Hi everyone,

    i was was diagnosed with Wegener’s September 2017 at University Hospital in Cleveland Ohio. I was set up with a UH Rheumatologist and started my treatments which are going ok with cyclophosphamide and will soon will take Methotrexate as maintenance along with prednisone like many of you. My issue is that every time I go in to meet with my “doctor” I see someone different. My doctor has fellows that work for him and it is a new fellow every time I go in. I called yesterday to have my latest fellow call in a Perscription for the Methotrexate and a different dose of prednisone and the secretary in a whisper told me that my latest fellow’s last day will be on Monday. So all his orders for blood work, and the fact that I am starting the Methotrexate next week, which I am a bit scared to start not knowing how I will react to it, I don’t feel I have a doctor I can call on if I have problems. So I am wondering if anyone knows of a doctor in the Cleveland area connected with UH that has experience with Wegener’s? I know that Cleveland Clinic has doctors experienced with Wegener’s but I am hoping to stay with UH. I really feel like I need some constancy!
    thanks!
    Ellen

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,043
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Hi Ellen,

    I think you can have good constancy of wegs care at Cleveland Clinic while maintaining relationships at UH.

    I live in Columbus, and all of my other docs (PCP, nephrologist, pulmonologist, cardiologist, etc.) are at OSU. I have My Chart at both CC and OSU and have signed the releases so that Dr Villa Forte at CC can communicate with OSU docs and vice versa.

    You’d think a major teaching hospital like OSU would have significant expertise treating wegs, but that wasn’t the case for me. The team that diagnosed me saw less than 30 wegs cases in a year. The docs at CC see that many weggies in two days.

    I suggest you get a referral to CC (Drs Langford and Villa Forte are excellent) and work out the communications issues between the two hospitals. You really need a doc with solid wegs expertise.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. Likes Aneinu, seied, Alysia, Jaha liked this post
  4. #3
    Join Date
    Nov 2015
    Posts
    152
    Post Thanks / Like
    Mentioned
    6 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    God speed to you. My son developed the condition several years ago and was treated as a minor in uh. But when we needed to treat him aa an adult, we switched to cc and Dr langford (together with Dr villa-forte). I believe that the most expert in the field Dr Brooks just switched to cc as well. I understand that switching can be difficult; if you can't, follow Pete's advice.

    Sent from my SM-G920V using Tapatalk
    Last edited by Aneinu; 06-25-2018 at 06:28 AM.

  5. Likes Alysia, Jaha liked this post
  6. #4
    Join Date
    Jul 2014
    Location
    Anchorage, Alaska
    Posts
    281
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    The docs at Cleveland Clinic literally wrote the book on Wegener's. You could not do better than to get established with one of the docs Pete mentioned, but there may be others equally qualified there. Good luck.

  7. Likes Aneinu, seied, Jaha liked this post
  8. #5
    Join Date
    Oct 2017
    Posts
    9
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Thank you Pete, Aneinu, and Alaskatom for responding. I need to see if my insurance would cover Cleveland Clinic first and then make a decision. The doctors you mentioned would probably be my best bet and I am very lucky that I am close to Cleveland. Pete, you said I should get a Referal. Would I go to my primary doctor to get the Referal? I kind of hate going to my Rheumatologist for the Referal. Would a Referal from a doctor get me in sooner than just trying to get in on my own? I know you can’t give me a definite answer. I’m more thinking out loud. Oh this whole thing is just so much to handle. I have a son that is a pharmacist who is advising me on medications. Like he wants me to be on leucovorin which is an active form of folic acid instead of the over the counter generic folic acid. This is with me starting to take the maintenance Methotrexate. So he’s telling me one thing and my husband is frustrated with the doctors and my son and just not having any control over anything or me being sick. In the mean time I’m trying to deal with not having the good health that I should have but don’t because of this crazy disease. Just feeling a bit down.
    thank you all for your support and understanding.
    Ellen

  9. #6
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,043
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Hi Ellen,

    You can ask either your PCP or rheumy for a referral. I asked my pulmonologist (he was my primary wegs doc at the time.) for one after asking how many weggies he treated. I explained that CC seemed to have more experience than OSU. He was really nice about it. He said he didn’t know anyone at CC to refer me to, but he said he would make a referral to the doc of my choice if needed. I self-referred. My insurance was ok with it (Medicare with Medical Mutual then, now have Aetna and Medicare).
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  10. #7
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    86
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Hi Ellen,
    Forgive yourself. We all have the crazies from time to time with this disease. I couldn’t handle folic acid (terrible diarrhea). But my doctors assured me that they would find the best medical formula that works for me. I am now on Rituxan infusions, 4 weeks, every five months and I am down to 8 mg of Prednisone. I am now, after a year and a half feeling better.
    I have had a couple pity parties. You are human, and this is not an easy disease to get our heads around. I think once you get into CC, you will feel more confident. When you start to see the light at the end of the tunnel, your husband and son will feel better, too.
    It scares them when Mom, their rock who kept everything together forever, now needs help herself.
    Since you have a grown son, I am guessing you are retired. If you have no strength try to get into something on TV. If you have a little strength, try a hobby to take your mind away. As strength returns, walks are good. I just read an article of what one should do to be happy. Don’t think about the things that make you happy, think about the things that you are grateful for. You already named a few, a husband and a son who care about you. Another, you are close to CC. So, pretty soon the glass will look half full.
    I don’t know if this helps or I am just babbling. But when I see feelings that I have had I want to reach out and make it better.
    Masha

  11. Likes Aneinu, seied, Alysia, Jaha liked this post
  12. #8
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    86
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    Hey Pete,
    Thanks for the info on Shindrix. My husband and I saw my ENT, and he said by all means to get it. We did, and had about the same reaction as you. Will get second one in August.
    Also thanks for sharing with me your ‘slowing of Prednisone’. I must have been going too fast on the reduction when I got the teeth pain. Now it is a very small, slow withdrawal. Currently at 8, hope to get to 5 by next infusions in September.
    Masha

  13. Likes Pete liked this post
  14. #9
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,043
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Looking for a Rheumatologist in the Cleveland Ohio area connected with UH

    @Masha
    Quote Originally Posted by Masha View Post
    Hey Pete,
    Thanks for the info on Shindrix. My husband and I saw my ENT, and he said by all means to get it. We did, and had about the same reaction as you. Will get second one in August.
    Also thanks for sharing with me your ‘slowing of Prednisone’. I must have been going too fast on the reduction when I got the teeth pain. Now it is a very small, slow withdrawal. Currently at 8, hope to get to 5 by next infusions in September.
    Masha
    My reaction to the second dose of shingrix was much more pronounced. I had the “tetanus” shoulder for several days. I also had flu-like symptoms the day after it.
    Last edited by Pete; 06-26-2018 at 11:53 AM.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

Tags for this Thread

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •