Re: Severe Upper Abdomen Pain - Ruth

[Guest guest]

Diane,

I went to a Gastro who has been a doctor to my family for 30 years

or so. He ran all the standard test...EDG, Gallbladder, Cat Scan

etc and nothing showed up. He was about to do a colon test when

he suggested the Levbid. It is an antispamodic. It didn't matter

what I ate or didn't eat I would have this pain everyday. I would

wake up with it and go to sleep with it. Since I am diabetic it was

tough to not eat ( I thought I had a ulcer-which I am prone to get )

so I drank Ensure to keep my blood sugars up. It did not cause the

glacoma. I have had Iritis for the last year and the pred meds I

have had to take has caused catarats and the Sarcoid the glacoma. I

am hoping with the decreased inflamation in my eyes that the glacoma

will go away. I have my first cataract surgury on July 24th. I

have to wait for the right eye until the iritis is completely

cleared up. Since nothing has take the inflamation away in the last

year I am worried that will ever happen. I hope you get some relif

for from your pain..as I thought I'd go crazy from it. My Neuo

problems from the Sarc were really bad then too so it was a double

wammi for me.

As for the Methotrexate..ask you doctor about the injections. It

causes NO GI problems and it keeps the liver problems down too.

GI is a common problem with the pills. I have another rare illness

called Mast Cell Disease also and I knew I could never take the

pills because of GI problems. I am a physician asst so giving

myself the injection was not a problem. They stopped making it for

a while a couple of years ago and I tried the pills but after one

dose I couldn't take them. My pharmacist started mixing it for me

so I could go back on it. Again make sure you are taking the folic

acid with it. I was on 12.5 for about 5 years with no problems....I

NEVER had a problem with hair loss until my dose was bumped up to

22.5 mgs about 8 weeks ago... I notice losing it right away but now

it has tapered off and I am not losing so much.

I hope you can get approved for the Remicade as it has been a true

miracle for me.

I am happy to answer any question I can....

Take care & have a great weekend!!

TTFN

Ruth

> >

> > Have or do any of you experience pain attacks right under your

> breastbone area and through your midsection? This is crushing,

> binding pain that takes away my breath and puts me in the fetal

> position. It comes on steadily for about 30 minutes and lasts

> heavily about 10. My poor husband gets the death grip on his

hand

> if he's around. I squeeze his hand so hard. The pain is just

> unbearable. First off, it is NOT my gallbladder as this was

taken

> out in 11/05. I have sarc all through my spine and my docs all

> think it is the nerves being pinched in my spine. I also have

> herniated discs and bone spurs from a long time ago. These

attacks

> seem to be brought on by any kind of exertion, which for me

anymore

> is just walking a couple hours or working around the house. It

also

> seems to be brought on my extreme heat. The pain from these

attacks

> are SO severe it's worse than anything I've ever experienced in

my

> life including having twins naturally. I have a high tolerance

for

> pain, but cannot handle these attacks very well.

> >

> > I have had CT scans, MRI's and Ultrasounds of the area and the

> only thing they see is that my spleen is enlarged and it and the

> liver are heavily involved with sarc (already knew all that).

They

> just started me on Methotrexate (12.5 mgs.) last week. Tomorrow

is

> my second dose. They are in the process of trying to get

approval

> of Remicade from my insurance company. I've already had two

attacks

> since going on the Meth :-( I hope that no one else is

experiencing

> this horrible pain, but it sure would be nice to know if the

docs

> are correct in thinking it is nerve pain from my spine sarc. Any

> light on this subject would greatly be appreciated.

> >

> > One more question - Just since I started the Meth this week

when I

> brush my teeth I am spitting lots of blood the whole time. This

is

> not the little bit you get if you don't floss your teeth good

once

> in a while. This is blood the whole time I'm brushing. I find no

> sores in my mouth like the doc said I might get and nothing

hurts at

> all. I've never experienced anything like this before. Anyone on

> Methotrexate get this? Should I call the doc?

> >

> > Wishing everyone cooler days than we're having!

> >

> > Thanks for any help.

> > Diane in Texas

> >

>