Re: or anyone help!

[Guest guest]

,

The Rheumatologist and the ENT that I've been seeing have both independently

come to the conclusion that I have Relapsing Polychondritis. Honestly, I'm not

entirely sure why the rheumatologist won't just officially give me the

diagnosis. When I asked him what further tests or evidence he needed, he replied

that he really needed to talk to my hepatologist because the treatment for RP is

toxic on my liver. My question is whether you have information on people who

have to take prednisone and DMARDs and their eligibility for liver transplants?

If you could find any info or if anyone else has knowledge on this topic, I

haven't been very successful in my searches. I will continue to look. , you

were the first person to look up RP years ago. It's taken years and a lot of

pain, but I finally feel like they have figured it out. Thank you for helping

back then and all the help you give me now. BTW, I am being evaluated in SLC. I

don't think I will be listed as of yet. I'm thinking I

really should go to Mayo Clinic Rochester with this new hitch. Lots to think

about. Cheryl ID

[Guest guest]

Dear Cheryl;

Are the doctors concerned specifically about the use of DMARDs in relation to

liver toxicity and eligibility for liver transplant?

If the goal is to avoid use of DMARDs (?) then biological therapies might be

good alternatives to consider. You might consider discussing these possible

therapies with your rheumatologist and hepatologist after further research to

get more specific details:

Rheumatology (Oxford). 2009 Mar;48(3):318-9.

Sustained response to tocilizumab, anti-interleukin-6 receptor antibody, in two

patients with refractory relapsing polychondritis.

Kawai M, Hagihara K, Hirano T, Shima Y, Kuwahara Y, Arimitsu J, Narazaki M,

Ogata A, Kawase I, Kishimoto T, Tanaka T.

PMID: 19106169.

Rheumatology (Oxford). 2006 Apr;45(4):491-2.

Refractory relapsing polychondritis: rapid and sustained response in the

treatment with an IL-1 receptor antagonist (anakinra).

Vounotrypidis P, Sakellariou GT, Zisopoulos D, Berberidis C.

PMID: 16510529.

Clin Exp Rheumatol. 2008 Jan-Feb;26(1):136-8.

Complete remission in refractory relapsing polychondritis with intravenous

immunoglobulins.

Terrier B, Aouba A, Bienvenu B, Bloch-Queyrat C, Delair E, Mallet J, Mahr A,

Guillevin L.

PMID: 18328162.

J Rheumatol. 2005 Jul;32(7):1413.

Treatment of relapsing polychondritis with a TNF antagonist.

JD.

PMID: 15996093.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)