Update and This and That

[Guest guest]

Hi Everyone!

I wanted to let everyone know that my PCP called me on Wednesday and she talked

to Dr. Mohan (my first fellow I had at the U of M, she is now in private

practice) and Dr. Mohan is willing to take me on as a patient. My PCP said that

Dr. Mohan feels she has some more ideas on how to treat me. If those ideas fail

then Dr. Mohan will call and talk to one of the major medical facilities (Mayo

Clinic, s Hopkins, or Northwestern) herself to try and get help for me. My

PCP told Dr. Mohan that I am going to have a Hysterectomy on June 3rd. My PCP

has to fill out some paperwork and then Dr. Mohan's office will call me to

schedule an appointment. Dr. Mohan would like to see me before my hysterectomy.

My PCP said Dr. Mohan was upset(as in sad) that I was having to have a

hysterectomy. She had been with me 2 years ago when my PCP, Dr. Mohan, and my

OBGYN (Dr. Kim Confer-Seely) did a conference call to try and figure out a plan

to treat my endometriosis and my Still's and try to

prevent me from having to have a Hysterectomy.

Also I wanted to let those of you who have trouble sleeping to talk with your

doctor about it. I talked with my PCP about it when I saw her on Monday April

21. She told me The xanax I was taking as needed for my Panic (stress) Attacks

is in the same family as Ambien. Since I am already on so many meds we decided

to turn the Xanax into a sleeping pill for me. I now take one 0.25mg Xanax pill

when I am ready for bed and I have been getting a good nights sleep every night

for 2 weeks now. I just wanted to tell those of you who are having problems

sleeping because of pain from the Still's to speak with your doctor and see if

there is something they can do to help you sleep.

To those of you who received no relief from Rituxan I want to tell you what my

Doctor did for me. Again this is just my experience. When Dr. Mohan decided to

try Rituxan to treat me she told me that we were going to try a more aggressive

treatment than what is used for regular RA because regular RA treatments had not

worked for me. She ordered 4 infusions (1 infusion per week) of 700mg of

Rituxan. The very 1st infusion I had a slight reaction. They then started giving

me Benadryl via my IV and 2 Tylenol pills. The 4 infusions of 700mg each worked

very well and I had to sets of Rituxan that way with good success. Then when my

fellows changed so did my Rituxan treatments. My last Set of Rituxan infusions

Which was in Nov. 2007 was 2 infusions at 1000mg per infusion. the 2 infusions

did work worth a darn. By the first part of January it was already wearing off

and by March 10th it had quit working entirely.

Also to those that have bad veins and have trouble getting blood drawn and IV's

started even with hydrating You might want to consider talking to your Doctor

about having a port put in. Especially for those of you who have Medication

given through an IV. I could drink all the water I wanted and my veins got to

the point where they couldn't get blood or start an IV. The port has to be

flushed once a month, but since I have to have blood work done once a month they

draw blood from the port and then they flush the port. It has saved me a lot of

pains and pokes. Plus when I have surgeries now and can't hydrate they have no

trouble starting an IV. It use to be that if I was told to show up at 8:00am for

a 10:00 surgery I would show up at 7:00am and they would just barely get the IV

started in time to role me into surgery. Actually once they rolled me into

surgery and had to start the IV in the surgery room, because my veins were so

bad and I couldn't hydrate to help them out

even a little. Even with the port I still have to hydrate for a blood draw,

because I have thick blood that clots very quickly. If my blood is flowing

slowly into the tube I can bet on the needle clotting before they get the

necessary blood. Yes they use a pediatric needle on me if they have to stick me

in the arm for blood. Someplaces can't access my kind of port, but by having the

port that reduces the number of sticks in the hands, arms, and I even had them

use my legs once. By reducing the number of pokes in the arm it has made it

easier to get blood from my arm if I am somewhere where they can't access my

port.

Ok that is my piece of wisdom from experience that I thought I would share.

I hope everyone is having a pain free day. I'm not we have 2 or 3 storm fronts

moving through today and tomorrow.

Take Care,

Fayette, OH

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