Re: multicentric reticulohistiocytosis

May 23, 2009

Regena,

I had never heard of this disease before, so I had to look it up. What

medications is your doctor trying, and are they helping your symptoms?

You're unique here, as I haven't seen it mentioned before. It's good

that you found a doctor who could diagnose you, since the disease is

so rare. Please keep us informed about your progress.

For those of you who had never heard of the disease before, this

article explains it in terms relatively easy to understand:

http://emedicine.medscape.com/article/283885-overview

Sue

On May 23, 2009, at 9:05 PM, flybutter wrote:

>

> well i was skeptical of course. but this doctor was sent to me by

> god. he took one look at my hands, my knees,my ankles and knew i

> didn't have chronic RA. he actually had to pull out the medical

> books and send me to the university of north carolina chapel hill

> before i could get a proper diagnosis. after all that i was

> diagnosed with MRH and although there is no set in stone treatment

> since this is so rare we have been trying different things. it's a

> relief to know i'm not crazy and my symptoms and pain are real.

> having a good doctor makes all the difference. thanks for listening

>

> pain free days

> regena

>

May 24, 2009

Sue, Thanks for the website, I also have never heard of this and was going to

look it up myself, but you saved me the trouble...

> >

> > well i was skeptical of course. but this doctor was sent to me by

> > god. he took one look at my hands, my knees,my ankles and knew i

> > didn't have chronic RA. he actually had to pull out the medical

> > books and send me to the university of north carolina chapel hill

> > before i could get a proper diagnosis. after all that i was

> > diagnosed with MRH and although there is no set in stone treatment

> > since this is so rare we have been trying different things. it's a

> > relief to know i'm not crazy and my symptoms and pain are real.

> > having a good doctor makes all the difference. thanks for listening

> >

> > pain free days

> > regena

> >

>

May 25, 2009

hi sue. when i was first diagnosed i was taking 20mg of prednisone (for the

itching) and 200 mg of cytoxan which is the worse drug ever to take. the drug is

like a low dose chemo drug. in drug guidelines you are only suppose to take this

drug for 6 months and your symptoms should begin to resolve. i ended up being on

this drug for 1 and 1/2 years and it has caused complete havoc in my body. i

haven't had a period for 3 years, my hair was falling out and the cytoxan didn't

help at all. so then me and my doctor sat down and talked about switching (yeah

he is cool like that!) to the enbel,humira etc. he felt remicade would be the

best bet for me and that is what i am on now. i'm better than i was but nowhere

near being back to normal. i am in pain everyday. some days worse than others.

the swelling has gone down on my knees (because of needle aspirations) but my

fingers, wrist, arms. ankles and feet are still swollen. MRH has affected every

joint in my body

and my last xray showed my hands has " significant erosions " . even though i deal

with this every day and being 32 and having a 6 year old it could be depressing

but i REFUSE to let it run my life. i walk around as much as i can when i feel

like. i've gained weight which i hate because i can't be as active as i like. i

have the loving support of my husband, daughter and my faith in god that gets me

through each day. this board has really helped me and telling my story is

liberating so thank you everyone for listening.

pain free days

regena