Doctor frustrations/med changes?

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sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/16/2008 8:19 PM (GMT -7)   
Well, I had my 6-month Tysabri evaluation today.  The doctor made me feel like I was ridiculous to feel anxiety about being on this drug.  More than that, he told me that perhaps I ought to seek counseling because I wasn't handling it well.  He sited another patient he has who is 17, just dx after 2 yrs mis-dx, surgery tomorrow and she was handling it better than I.  I was SO mad! mad    I just don't know if I am receiving enough benefit to continue the drug.  I mean, I know I am better than I was 8 months ago, but I question the degree of response for the risk of the drug.  Long and short, his bedside manner has never been worse.  I was looking for his opinion and direction not a lecture and shot at my strength!
 
So, I suppose I will skip my next infusion and see what happens.  (This is why, hspenser, I was wondering how long it took for the benefits of Tysabri to wear off when you stopped.)  I am taking budesonide suppositories at the same time, and initiating those is when I had the relief.  Two months into Tysabri I still had fevers, pain and 15-25 bathroom trips a day.  After starting the suppositories, I dropped to 3-5 times a day.  I just want to see what happens...  But, I have not cancelled yet, because I don't know if I will have this infusion or not. 
 
Thanks, just need to vent, I guess...
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/16/2008 8:25 PM (GMT -7)   
Oh, Shari. *hug* That's terrible. It seems to me that your concerns are legitimate and should be heard.

I'm so sorry.

I.
Co-Moderator Crohn's Forum.


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 9/17/2008 4:25 PM (GMT -7)   
Absolutely. The man needs to do some serious work on his bedside manner.

Apart from anything else, isn't it the first rule of counselling that a patient's fears should be taken seriously, even if they seem absurd to an outsider? After all, it's the fact that it's worrying *you* that's the issue, not whether it's worrying to him.

Unbelievable. Of course you have reason to worry. Why else would there be so much controversy about the drug, and so much trouble getting it approved?

I'm indignant on your behalf. Is there any way you can get a different doctor, or are you stuck with this one?

I.
Co-Moderator Crohn's Forum.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/17/2008 8:16 PM (GMT -7)   

Thank you again so much, Ivy.  I am settling in and feeling at peace.  I think his extreme abruptness yesterday was brought on because I sought the (second) opinion of my older doctor.  I only left my old doctor because the "new" doctor ran trials and I thought that might be to my advantage.  It's not turned out that way, so I am returning to the care of my old doctor.  They are both very good technically, it's just bedside manner separating them.  The old doctor has a half dozen women (daughter/wife) in his life and is great at whatever I throw his way.  The first time I met him I was out of my mind and pleading for steroids (long story for my memory books).  He just helped me solve the immediate issue and laughed with me later about it.

In a way I am glad my "new" doctor was not pleasant.  It makes it an easier choice!  And, if I chose to try to take a break from Tysabri, he is supportive and actually gives an opinion instead of demanding a decision.  After all, isn't a doctor there to guide us?  I know I research a lot, but I don't want to be my own doctor!  rolleyes

In his support, I suppose he felt legally in a tough place.  If the "old" doctor was reporting he felt I'd failed the med, then he could get in trouble for allowing me to continue.  But, still...  every patient is entitled to more than one opinion!  In fact, at times, we would be unfair to our own care to not seek more than one opinion in serious matters.

Anyway, sorry so long.  I just really appreciate that you guys "get it."  Thanks again!


--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl

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