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Dr. Lamm's Reply - Arthritis and BCG's

14 years 1 day ago #2507 by Rosemary
Dear Ones,

I need advice, please. How do I tell my new Doctor that he was probably wrong about his assesment of my reactive arthritis? Do I show him Doctor Lamm's E Mail?

I don't want to alienate my new Doctor.

In his (kind of) defense, this reaction is very rare. He told me he had never heard of this before.

Help, please.

Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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14 years 2 days ago #2484 by Rosemary
Elaine,

Thanks for asking about my pain!! It's so kind of you.  It is no little pain, I can tell you.
Some days are better than others.  NSAID's help a lot.  My hip seems a little better, but I'm having trouble getting dressed and undressed, cause when I lift my arm, it feels like it is wrenching out of the socket. :'(

Wendy,

I'm doing a lot of research on BCG's and I think I found the European report that you mentioned in another post.  I'll post more about that later...but to answer your question about how long this lasts...from what I can gather, it may be up to 3 months....there is also a chance of it becoming a chronic problem.

What I would like to know, (and I did reply to Dr. Lamm and ask him this one last question:)

Is this an immunological response, an allergic reaction or BCG toxicity?

Thanks for all your kind support to both of you!  It means a lot to me.  Also, I agree...Dr. Lamm is a pip!

Rosemary



Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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14 years 2 days ago #2482 by wendy
Good job Rosemary and thank you for sharing that. Dr. Lamm is a pip! He's been supportive of WebCafe since day 1, too, has provided us with invaluable feedback. I'm glad he's doing that site now, it's a good thing and quite brave of him to put himself out there like that. He's always been a bit of a rogue in the field, and out in the front as well.

If only he'd get more support for some of his interesting clinical trials, such as with alteratives like garlic and vitamins.

About you, though...I wonder how long the condition will linger, anybody give a clue?
Wendy

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14 years 2 days ago #2474 by rugrat1956
Rosemary, has the pain let up? Is it permanent now? hope you are better. elaine

elaine f.
dob- 1956
female- Indiana, USA
caucasian
smoked cigarettes- 1975-?
5cm-noninvasive- low grade- papillary
TURB- Sept 11,2006

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14 years 2 days ago #2449 by Rosemary
Gang,

Here it is!........


   Severe Arthritic Pain One Week post BCG

Dear Friend,
Sorry to hear of your arthritis.  I am afraid that your suspicion is
correct, it certainly could be related to BCG.  I would suggest that, if
you really need BCG, the dose be markedly reduced for your next (delayed,
hopefully) round of treatment.  You will know for sure when the pain
returns, but it should be at a markedly reduced level.
Thanks for asking,
Don Lamm, MD

> Below is the result of your feedback form.  It was submitted by
>  (This email address is being protected from spambots. You need JavaScript enabled to view it.) on Tuesday, November 21, 2006 at 17:53:03
>
>
> question: One week to the day after receiving my 3rd instillation of BCG
> in October,  (having received 6 BCG treatments in June), I awoke to sudden
> and acute
> joint pain in my left hip, right shoulder and right hand.
>
> The pain is still severe after 3 weeks.
>
>  I have never experienced arthritic like pain before.
>
> My urologist does not think that this is associated with BCG treatment,
> because the onset was not DURING the treatment.
>
>
> Do you agree?.
>
> agree: yes
>
> Submit: Submit Question
>
>
>
>







Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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