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Thread: Angry and confused

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    Default Angry and confused

    I've been dealing with this disease for a little over two years. I've been treated by my Rheumatologist now since December 2012. Mainly because my Pulmonary Dr. on post referred me to her.
    My last flare was in August 2013 and took Solmederol infusions for three consecutive days before being started on a maintainence dose of Rituxan. Saw Rheumy in early December and was still having some issues so she had me do another maintainence dose as a precaution. One on Dec.26 2013 and the second dose was Jan. 9 2014. I should mention that I've been off Prednisone since the first week of November 2013.
    Every time I'm taken off the Prednisone I experience horrific joint pain. Mostly in my hands and feet. From what I've read on this forum it seems a lot of us experience this.
    In November I begain having issues with my lower back. I've had a history of lower back issues since my 30's. This episode in November was by far the worst that I've ever experienced. I had muscle spasms that locked my lower back up like it was a piece of armor. Long story short, Had MRI and referred to neurologist. I have four bulging disks from L1 - L5, severe scoliosis, and osteoarthritis. I took an MRI from '08 just as a reference to the MRI done Dec. '13. The thinning of the vertabrae was the most startling.....most likely from years of heavy lifting and of course the long term, high dose steriod. I'm currently in PT twice a week.

    I have to be honest in saying that my Rheumy hasn't been forthcoming in giving me technical information on my labs. Other than telling me my Anca level. Which is why I'm posting today because I was so angry and upset when leaving her office this past Tuesday that I was ready to never go back and see her.
    I'm sitting there in her office and I was about to ask her if there could be anything else going on to cause the joint pain. I've already test neg. for RA. She literally snapped at me by saying "No." Several moments of silence pass and then she is smiling and telling me that my anca is 148. Compared to last November at 190 that's a very good number. So good in fact that I will do labs again in May and when I see her in May if the number is the same, then she will give me an open date labs sheet and she will be done with me. In other words.....don't come back unless you're sick.

    My question is....am I wrong in being appalled that she would consider 148 a low number? Or that she wouldn't even say the word remission?? I just feel like after nearly a year and a half, she can't get the disease under control and now doesn't want to have to deal with me.

    Sorry for ranting. I'm just really lost as to why this Dr. feels that she shouldn't have to see me unless I get sick. I still see my Pulmonary Dr. every two months so that he can keep tabs and see how I am doing. And he's seen me since I was first diagnosed.

    Thank you for any feed back.

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    Hi and welcome.
    I agree that you need a doc who will listen and not dismiss you. waiting untill May is too far. and you need to continue to come to your wg-doc, maybe for life, so you need a good one.
    anca is not the only thing to look at. how are you others labs results ? what are you suffering from ? what meds are you taking ? when are you going to have your next rtx ?
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Hi Alysia,
    Like I said, she's not forthcoming with my lab info. Currently she is only treating me with Bactrim three days a week and the Rituxan maintenance doses every three/four months. She told me if my anca was still at 148 then goodbye. If it's higher then another round of Rituxan.
    Frankly, I'm ready to be done with her because I've been telling her about the joint pain/stiffness since last spring, but I'm ignored. The only time she listens is if I have bleeding nose or ear pain. I feel like I'm just a number on a lab sheet and as long as my number fits her sense of normal then everything is fine.
    I should also mention that she didn't move herself to listen to my lungs, look in my ears. The normal.....check the patient over. For what she did, she could have just called and told me the lab results.

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    Hi Jaypfei, glad you found us so maybe you can get some better direction. This blog is by no means a cure-all, but it really helps, especially when you have questions or are in a panicky state over the WG...and other things...sheesh. Anyway, you do need a better more concerned Rheumy. While this doc has you on a good track right now, it's not enough and she needs to get to it or pass you on. Actually, YOU need to find another. Your numbers are still high and the symptoms are recurring, not good. You're nearer Jacksonville and the Mayo clinic if you'd like to get some specific help with WG. If you're at the Pensacola base, that's a long drive so maybe have your current doc consult with someone at Mayo, but if closer...it'd be worth your time and effort to go there & get help. It appears more docs nowadays are recognizing WG and learning how to deal with it, but not all are experienced enough yet to do anything other than read out of a book...sorry...that's what happens with 'strange diseases'! Ha! Best to you, get some better help soon!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Hello Jay -
    So sorry to hear what you are going through. Not all rheumatologists are "into" WG. I recommend talking to your primary or pulmonologist for a different Rheum for "2nd opinion". Many rheumatologists have wonderful nurse practitioners or RNs in the office that can help with the "teaching" element of the disease. Many times doctors treat and nurses teach. You may benefit from an office that has a doctor or staff that have interest in WG and that will take the time to take your
    concerns seriously. This is a hard dz to live with, a good doctor will understand that and work with you to educate and treat and keep you up to date on the status of your WG.

    If you post where you live (city/state), perhaps some Weggies on this forum can make some Rheumatologist recommendations.

    Prayers your way -
    Blessings - Deborah T.

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    Thanks Don,

    I've been a silent member of the forum for awhile now. Just becoming vocal now. I'm 8 miles away from Eglin Regional hospital. Yep, Jacksonville is a loooooong drive away. But maybe I can see if my Pulmonary Doc can get me a referral.
    I should tell you that I am only one of two rare disease patients at this military hospital. While I'm not out beating a drum to raise awareness, my medical file/case is required study for all new residents at Eglin Regional. So in some sense I am educating new doctors.

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    I understand the 'special' treatment attention you're getting...wish everyone on here could be as fortunate. I'm considered a 'poster boy' at Mayo here in PHX due to my 'amazing' non damaged recovery of badly damaged lungs. My pulmy just loves me cuz he has to deal with so many who haven't recovered as well or as quickly...to the point of maintenance that is. Enjoy it for what it is and if it gets you any bennies, take them! Glad you're becoming more vocal now...we need input from all peoples! Best to you!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Welcome Jaypfei. Sorry to hear you are going through such a hard time. Are you currently retired? Unless your insurance requires it you don't need a referral to Mayo. You can just call and make an appointment. You can ask your doc, any of them, for a copy of your labs. You can also call her office and ask for a copy of all your records which would be handy to have if you are going to another doc. She may charge for them, but in the long run it's worth it. I just paid $29 to get copies from my endo, none of the others charge me. Now I get copies from my docs after each visit, of course I have to give them time about a week or so before I request them. My pulm and endo both give me copies of my labs without having to ask for them at the time of my visits. I suggest you get copies of all your doc records for the last two years to follow the wegs. It will come in handy at some point, trust me.

    I was diagnosed in 1972 at Madigan Army Hospital so you can only imagine what kind of an anomaly I was back then. I did get good care and ended up being sent to Wilford Hall in San Antonio for further evals. They finally decided to discharge me. I too was included on all the rounds in the hospital and discussed at many a meeting.

    In the meantime you do need a good Rheumy. Can you share what your initial treatment plan was? How many RTX treatments etc. Also what areas are involved? It sounds like sinus, ears and lungs. As well as your joints. What exactly is your pulmonary doc doing for you? Were you ever actually in remission? It doesn't sound like it. Sorry for all the questions but they will help to determine what direction to head you in. Again sorry you have to be here, but it's the best place to be under the circumstances.
    Last edited by windchime; 03-16-2014 at 05:23 AM.
    Cindy



    Earth is just a stopover and whatever you achieve there is only a small part of the deal. The Afterlife Of Billy Fingers


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    Sounds to me like you have a great relationship with your Pulmy, perhaps he/she would be open to conversing with Jacksonville or Mayo. I am very happy with my Pulmonologist and he was diagnosing doctor also. i still see him, mine presented in lungs, and he is terrific. That being said most of us have a Rheumy, ENT some have Opthalmologists and whatever else we need. Strongly suggest finding a specialist. Gee I sound like Sangye.
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    Hi Cindy,

    My hubby is retired AF. I posted some where on here. New Wegs. I was hospitalized Feb 2012 with lesions on my lungs horrific ear pain and bleeding from nose. The disease first presented as a resistant ear infection. But kept getting the typical run around. Lung biopsy, mastoidectomy both showed granuloma. That with anca, I was dx Wegener's GPA. First treatment was Cytoxen, pred and Bactrim. Was on Cytoxen until CT scans showed no lesions. May 2012. Stayed on Pred till early Aug. 2012. Flared in Oct. 2012. Horrific ear pain, bloody/crusty nose. Weird indent in bridge of nose. Yes, saddle nose. Nasal/sinus biopsy showed granuloma. Start 60mg prednisone. See rheumy for first time Dec 2012. Starts me on Rituxan once week for 4 weeks. Inflammation levels still high so I go in for three days straight for 70 mg somederol infusions. Feb 2013 she begins me on Imuran and methotrexate. Imuran is 50mg twice daily. Methotrexate 1cc once a week. Mind you I'm still taking prednisone. Suppose to step down on prednisone and Imuran will replace it. By mid March 2013 I'm having liver distress. Taken off Imuran and methotrexate. Put on Cellcept for approx two weeks before I get a call and told to stop taking it. By this time I'm so pumped full of drugs I'm miserable. Rheumy starts stepping me down off prednisone and off by Apr 2013. Started on Forteo 20mmg daily injection for osteoporosis. Bone density test showed significant bone loss. Of course taking 1000mg Oscal prior to dx
    When I stepped down from pred, I immediately started having joint pain. At this point I'm only seeing rheumy once every two months. And that's my schedule with her.
    June 2013 I have BAHA surgery, no problem. By August 2013 I have crusty nose and sent for 3 days infusion of somederol. ...again. Then I start 60 mg of pred and maintenance doses of rituxin. Stepped down from pred and off early Nov 2013. Rituxan again in Dec 26 and second dose Jan 9. All I am taking currently is Bactrim 3 times a week.
    Apologize for the length, but that's as condensed as I can get.

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