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New here Rasone's story

So yeah, I guess it's kind of hard to just sort of get it out there when you've been dealing with it so long. In any case, I guess I was luckier than my brother who also has it in that he was diagnosed first and when I started having the same symptoms they knew what to look for. Well that was 10 years ago.

Since then I've had two years of steroids that made made me look like a marshmellow, a bowel resection, and periodic flare ups. After my resection I lost my job and couldn't get health insurance and didn't have any treatment or medical attention until last October when I started going to BYU and got on the student health plan. Luckily for me my flare ups over the last 6 years had been minor.

Well, I started school and it's pretty hard and stressful. I started having serious flare ups and the Doctor put me on the Pred... again. He prescribed pentasa and just as I was tapering off the Shire cares people took my pentasa away. This caused an even worse flare up which put me back on the Pred.

Now I'm taking 40mg with finals coming up next week. I can't sleep and don't feel like studying. If anything takes more than a couple minutes to figure out I start getting pissed off and can't concentrate further. This make my Chemical Engineering studies almost impossible since I have to concentrate during tests. To be honest I'd almost take the continued trips to the toilet and pain over having my brain go, my brain's way too valuable for this major.

Last finals I flared up and was on 40mg a day and I failed all of them (except the english one because it was a paper got an A on that) Luckily I had a high enough grade before I started treatment that my lowest grade was a B-. Now I'm worried the exact thing is going to happen again.

Anyways, I just needed to vent a little and I wanted to talk to people that have to deal with this stupid disease all the time since no one else seems to understand.
 
Location
N.Z
Hi rasone, welcome.

sorry to hear you are having such a tough time at the moment!
I can't imagine trying to study while taking 40mg pred!!
I'm sure you will find a lot of good advise and understanding in this forum.
I wish you the best for your finals.

M
 

Astra

Moderator
Hi rasone
and welcome

Sorry you're having such a bad time too
Being on Pred and studying! God that's tough! When I was on 40mg I was wizzing! Loads of energy too, but couldn't concentrate on anything. When I tapered to 20mg, I was fine, back to normality. Could you taper to maybe 25-30mg, just so you can revise? If you get symptoms, you can up the dose again?
glad you found us, any questions, just shoot, here to support you, and sending good luck wishes too!
Joan xxx
 
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Hi Rasone,
Sorry you're have a tough time. Pred can be a lifesaver, but at such a cost.
I'm not familiar with Shire Cares, but why did they take away the Pentasa? Seems like pretty standard stuff. Any Doc would want to move you off the pred.
Does the student health plan cover prescriptions? I know that pred is cheap and Pentasa / Asacol is expensive!
 

Entchen

Chief Dandelion Picker
Getting a Chem Eng while on Prednisone = impressive. Sounds like you're doing great, even with the ups and downs of illness. If you think it might help, most colleges have a resource and disabilities centre that might be able to help you receive fair accommodation when you experience a flare (example: put off writing finals until you are able to take them). Take good care.
 
The college has been great in that regard but the problem is that I still have to take them while on the Pred.

Shire Cares is the donation company for the people that make pentasa to give it to low income people. They said I had to apply fro medicade and get a denial letter, but in Utah you can't even apply if you're a college student whose not pregnant because so many people come from out of state, or country to go to BYU. So I'm in a bad boat.

I went to my Doctor today and cut my Pred dose to 20mg since I've only been on 40 for a week and started me on Imuran at 25mg twice a day. Hopefully this keeps me from flaring; now I just have to buckle down and study for my finals.
 
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