Re: [Rpolychondritis/New Sharon

[Guest guest]

--- Lee27a@... wrote:

>

>

> My name is Sharon and I have just been dx with

> Rpolychondritis 3 days ago. I

> am in a lot of pain in my left ear. I also have

> Sjogren's Syndrome,

> Fibromyalgia, Raynauds--the list goes on. Today my

> ear is a lot more

> painful. I am afraid. The doctor put me on some

> gout medication which I

> haven't taken yet. I went to ER on Sat. and that

> doc said I had (after

> giving him my opinion) bacterial dermatitis. I saw

> the ENT doc on Mon

> morning and he dx me and said I had to see my

> Rheumy. I saw him on the same

> morning and told me to continue to take the

> Augmentin that the ER doc

> prescribed for me and then to start on the gout

> meds. Why gout meds? Do a

> lot of you have this much pain? I just had surgery

> on March 11th for an

> endometrial ablation and that seemed to aggravate

> the situation. I remember

> the first time I woke up with my left ear all

> swollen and hot and painful--I

> thought I had an infection from an earring since I

> am so sensitive to certain

> types of earrings. Silly me, it couldn't be that

> simple:( Also I just lost

> my dad who went through a terrible death on the 1st

> of Jan. and lost my mom

> 13 months before to cancer. I don't know how much

> this new disease is caused

> from being a nervous wreck because I am and I don't

> know how much is caused

> from--being the disease. I thought the Sjogrens and

> the other autoimmune

> diseases were a lot to deal with, and they are--I

> Iive at doctor's offices.

> Please, can you share some of your information with

> me--how you were dx, what

> meds help, how bad this can get etc etc. I am

> really, really having a hard

> time right now.

>

>

>

> Thank You, Sharon

>

Hi Sharon, and welcome to the group. I am also

Sharon, hereafter known as squeek. I have been

diagnosed with RP (among others) for about 10 months

now. I believe tho that I have had it for about 6

years.

You asked about being dx'd. The first time I went to

my rheumy I had just had a very painful ear flare. I

asked him about what would cause my ears to do that

and he told me immediately about a rare disease called

RP, and said I did not want to have it. He started me

immediately on Prednisone and the ears cleared up. We

talked about it at every visit and he finally

diagnosed me three months later. I have been on many

of the so-called prednisone sparing drugs. Right now

I am on Remicade infusions and it seems to be working

well for me.

Keep in close touch with the group. There is a lot of

wisdom, care, and concern that will come your way.

I am 57 years old and live in Oregon. Married for

almost 39 years. I homeschool our son who is almost

15 years old, and help raise our 9 year old grandson.

Sorry about the loss of both your parents. That is a

very stressful time! Stress is not good for us, that

is for sure.

Take care and keep asking questions. I don't know

about the drug your doctor prescribed, but anytime I

want to look up a drug I just go to RX.com.

Love, squeek aka Sharon (OR)

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