Questions

[Guest guest]

Thanks Judy -- To answer your question: Yes, I was given the

diagnosis of RP back on March 11th. My doctor hasn't started any

medications yet because he just completed more blood work and I just

had a pulmonary function test, which by the way said I was 48%

capacity. I assume that's not too good and may explain the " chest

cold " I haven't been able to shake in 7 months! Nonetheless, I'm

sure the doc will start me on something when I go back on 4/18.

Thanks again,

> > Wow, , isn't this a FUN disease? My only question is how

did

> you manage to lose weight? Just wait til you start the prednisone,

> my guess is the weight will come back fast enough. That is my

> biggest complaint with the prednisone. As everyone in the group

> knows, I tend to eat the woodwork when I'm on pred - which seems to

> be most of the time! Everytime I get down to 5 or 10 mgs, something

> else seems to happen and I'm right back up to 60 mgs again!

> Fortunately, the Methotrexate is still working for me, still have

> side effects (nausea and my Tuesday migraine) plus fatigue, which

> everyone has, but I'm not flaring so I am willing to put up with

the

> side effects. I hope your rheumy finds out what works best for you

> and that you can tolerate the treatment as everyone is diferent

> which is why none of our stories is the same, makes it tough on our

> doctors too! Hang in there, once they get you regulated, it is

> better. While my flares are under control, my life is fairly

> normal, so don't get too down, altho' I know how easy it is to do

> so. Hang in there, you WILL feel better! Judy O

> >

> > New Member story and questions

> >

> > Dear Group;

> > I just wanted to introduce myself. My name is and I'm

> > originally from North Carolina, but currently I'm a seminarian in

> > Washington, DC. I've been here in DC for almost three years now.

> >

> > First, thank you for creating this group. I'm sure it will prove

> > beneficial to me as I try to sort through over 48,000 messages!

> >

> > Second, last week, on my 27th birthday no less, I was diagnosed

> with

> > Relapsing Polychondritis. I had never heard of it before. I'm

sure

> > most all of your stories are the same, so I'll keep mine brief. I

> > grew up a healthy kid and played some sports in high school. The

> > year I went off to college I had some health problems. I just

> didn't

> > feel so good. Student health determined that I was diabetic.

Well,

> I

> > had put on several pounds my freshman year, and after dieting I

was

> > able to regulate my diabetes via diet and exercise. By the time I

> > graduated, I had to be put on several medications to help

regulate

> > both the diabetes and the effects of the disease. In January of

> > 2001, a year and a half after entering seminary, I had an

incident

> > of A-Fibrillation. It lasted 37 hours and I was in the CICU for

> > three days. The electrical systems of my heart began to fail even

> > though my heart muscle was just fine. After regulating this event

> > there were a few others that required hospitalization. But,

> > eventually it was regulated. However, I never felt better. I

> started

> > having cases of colds that wouldn't go away, bronchitis that

seemed

> > to come and go not paying attention to any cough medicine I was

> > taking. Last year I also started losing weight. I dropped almost

50

> > pounds. Sometime in August of last year a lumps developed

> > simultaneously on my right ear, in my throat, and believe it or

> not,

> > in my right eyelid. I went to student health, bad mistake; they

> > treated me for months like I was crazy. Finally, I went to an

ENT.

> > He did a surgical biopsy and found that these lumps were

cartilage

> > in a state of degeneration. The scary part was the rate of

growth.

> > They started out as an annoyance, but began to cause some pain by

> > October of last year. Finally, my ENT recommended a

rheumatologist.

> > I saw him in January. He took tons of blood work tests. He also

> sent

> > me for a pulmonary test and reviewed my history. By February

there

> > were some problems with the veins in my legs and with numbness in

> my

> > hands and feet. By now I've lost nearly 60 pounds and I felt

tired

> > all the time. My lab work showed that there was swelling

somewhere

> > in my body. I believe he said my C Reactive Protein something was

> > almost 50 and the Westergren ESR test was 50. There were other

> tests

> > that pointed towards swelling as well and the pulmonary tests

> > concluded that there were airway restrictions. So, as you can

> guess,

> > on March 11th the doc told me that I had something that wasn't

too

> > common called Relapsing Polychondritis. He said it wasn't a good

> > thing to have. He is sending me for an MRI of my throat to

> determine

> > the extent of the damage there since it is now difficult to

swallow

> > without overcoming the lump and hearing a loud clicking sound. He

> > may start me on steroids and cortisone shots, but because I am

> > diabetic he is not sure how I will react.

> >

> > So in addition to sharing my story, I wanted to know if anyone

else

> > has had electrical problems with their heart develop as a result

of

> > this illness. My doctor and cardiologist don't know of any links,

> > but it does seem related since the RP became troublesome

> immediately

> > following the heart problem.

> >

> > Thanks again for this group and your support. You are all

> remembered

> > in my daily prayers.

> >

> > Sincerely,

> >

> >

> >

> >

> >

> > DISCLAIMER!!

> > WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT

> IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR

> DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A

> SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER

> EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US.

> THANK YOU

> >

> >

[Guest guest]

It sounds like everyone made it through Thanksgiving without too much

trouble. Mine was very enjoyable spending time with my grandson. My only

problem is when I start moving too fast, I start sweating, I mean sweat

pouring off of me. It's pretty embarrassing, fortunately my family

pretended not to notice.

Generally, I would say I seem to be leveling off, at a pretty constant pain

level of 6-7 every day without pain medication. And pain medication that

worked really well six months ago doesn't seem to work as well. This seems

like such a short period of time to become tolerant. Can anyone give me

their opinion on their tolerance. I don't want to move up any faster than I

need to, though of course, I can hear you now telling me it is an individual

thing. But I guess I would feel better if others grew tolerant to a dose in

a six month period also.

I am waiting to see a new specialist in Philadelphia at Jefferson Hosp. It

has been about 4 weeks, and I'm still waiting to get an appointment. Is it

just me, or do others have a terrible time getting appointments? My primary

doctor here is thinking maybe a spincteroplasty would work, since my main

problem involves my pancreatic duct become clogged. I have previously had

two stents, one clogged while it was still in, and the other was left in for

two weeks, and I think it got clogged almost immediately upon removing it.

There was someone on the board who had mentioned that they were taking

something to make their bile less thick, and this is the second request, if

this person is out there, could you tell me what you are taking for that,

and how was it determined that your bile was too thick and therefore

contributing to the problem.

Deanna I have been taking it for 8 years with gravol for nausea.

I have

> never become addicted to it and find it works to elevate some of

the pain.

> Nothing ever really gets rid of it all I just want the edge of so I

can function.

>

>

I was curious as to what medication was being referred to here. If there

was a medication that is not addictive I could be taking, I would love to

find out what it is.

Thanks for your time in answering my questions....

Robin R.

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