Re: Off the Imuran-Sharyn & others

[Guest guest]

Carol, I'm so sorry to hear that you are feeling so bad. I had a lot of

swelling until I got my pred dose down to 20mg, then it started to go down,

I haven't been able to wear any of my rings for 3 years. My hands still

swell, but not nearly as bad and am hoping that it does go away the lower I

get on the pred.

It sure sounds like you have a great dr and is on top of things.

I had a hyterectomy too in 1993. they left one ovary, the bad one. LOL Have

been on estrogen since and I also am taking the highest dose. For some

reason my body can't seem to retain the estrogen. I have tried the patch and

many kinds of estrogen with no success. Did your dr run any homone tests.

I know I did sweat more when on higher doses of pred. But I am still

sweating. You'd think I have lost 30 pounds by now. LOL

Please keep us updated and let us know what you find out. Please rest and

know I'm thinking of you.

hugs

[Guest guest]

In a message dated 3/13/02 9:14:02 PM Pacific Standard Time,

mgiordano@... writes:

<< WE can find the common threads that bind us all with this disease, and we

could keep all the research money for a big vacation together after we find

the cure!!!!! >>

Oh Carol that sounds wonderful. AND I wouldn't care where we all went. LOL

Just to be together would be wonderful. You go get some rest. I haven't

slept the last 2 nights. Don't know why. It's like I'm on 100 mg of pred.

Just lay there wide awake ALL night. Going to go try the hot bath and candle

routine with aroma therapy and see if that will work LOL

I agee, if we keep searching we are bound to find a common denominator.

hugs

[Guest guest]

Hi Sharyn,

I wanted you to know I am going through the same thing as far as reactions to meds, and the trial and error thing. I've been trying to get this right for over 2 month, have had 3 allergic reactions, and we're not there yet. I just saw my Rheumy today because I have swelled up 8 lbs since Sunday, I am shaking uncontrollably, and I'm starting to get that burning feeing all over again, along with worse than ever night sweats and now the daytime how flashes and sweats - he said the sweating can't be hormonal because I had a total hysterectomy, but I am on the highest dose of Premarin. The Dr thinks it's meds and is hoping it's not a flare or my kidneys (the Jury is still out on whether I have Wegener's along with the RP), He is running all the tests again to see what we can turn up. I had to go back up on my pred from 30 to 45, and I was so happy because I had been able to come down before this. I also take 50mg Dapsone 2x/day. He didn't want to change that yet. I'm supposed to be talking with my Neuro tomorrow morning about changing or stopping the Neurontin I've been on since Dec., before I was diagnosed. I just upped that last month for headaches and paresthesias, and I'm getting a second MRI next week of ny brain. (Hope my insurance will do it!) Isn't this all so much fun?!

I'm sorry that I ended up dumping my day on you, but I thought it may help you in some strang way, like it has me, to know there are others out here that are going through much the same as you are. We have to help each other so we have the strength to keep going and look out for OUR own health and best interests. It's great you got involved with this wonderful group and are so willing to help. We all appreciate your enthusiasm and know you'll be there for us, as we are for you.

Take Care, and keep letting us know how you are,

Carol G

PS - If anyone else reads this and has problems with this fluid retention, or kidney problems, please let me know. My Dr. doesn't want to put me on a water pill until we get to the cause of the problem. But I think my back pain and headache that developed today are part of it, and it's VERY uncomfortable. Thanks for any help. COG

---- Original Message -----

From: sharyn1948

To: Rpolychondritis

Sent: Wednesday, March 13, 2002 10:00 PM

Subject: Off the Imuran

Hi AllWell think I told you my Rheumy took me off the Imuran. That was the trick...all the side effects have stopped thank goodness and am able to eat finaly and not have it go right through me. Looked up all the adverse effects of the medication and dang if I didn't have over half of them. I guess this is what I am to expect with other medication he may try on me.

[Guest guest]

Yes, , I had the tests, and that's how I ended up on this high dose, but I haven't been tested since then. I too couldn't retain estrogen - that's strange isn't it.Wonder if it could all be connected some how (I know, that wouldn't work for the men and children - but a general malabsorbtion or hormonal thing could) Maybe if we all work hard together and keep sharing stories, WE can find the common threads that bind us all with this disease, and we could keep all the research money for a big vacation together after we find the cure!!!!!

I'm getting tired, but I'm not sleeping yet, even though that sounds like a dream.

Have a good night, , Rest well and take care of yourself so you can make the best of your kidnapping plan!

Love,

Carol

I had a hyterectomy too in 1993. they left one ovary, the bad one. LOL Have been on estrogen since and I also am taking the highest dose. For some reason my body can't seem to retain the estrogen. I have tried the patch and many kinds of estrogen with no success. Did your dr run any homone tests.

[Guest guest]

, I am shaking uncontrollably, and I'm starting to get that burning feeing all over again, along with worse than ever night sweats and now the daytime how flashes and sweats

Carol,

I have been having those same sweats and have often wonder if I also had WG because I get uncontrollable nosebleeds also. Just curious.

Lu