New to forum

[wsb200]

Hi all,

I've never been part of a support group, but thought it was about time to check it out as I haven't been doing well lately, and it's wonderful to know there are other people out there who feel my pain (figuratively and literally.)

My story (I'll try to make it brief):

I was diagnosed with severe plaque psoriasis when I was 15 and a sophomore in high school. I was covered 99% head to toe in plaque psoriasis and the day I was diagnosed was what I thought the worst day of my life. The disease was so humiliating I had to stop going to school for a year. Turns out, that diagnosis was not the most crushing news I would encounter, and I wouldn't even know it. When I suddenly couldn't hold down food my last year of college, I stopped eating for 2 months and lost 37 pounds, I was told in the hospital that I had Crohn's disease. I had never heard of this disease, but the thought of battling another autoimmune disease was almost too much to handle.

Luckily through heavy rounds of prednisone treatments, remicade treatments, and chemotherapy treatments I have so far been able to avoid surgery, and I have only had 2 extreme flares in the last three years that have resulted in long-term hospitalization.

In fact this past year I have been in complete remission and this summer I was in the best shape of my life. I even ran a half marathon in August. So the reason why I am having such a hard time with this most recent flare up I am dealing with is because well, you could say I am partly to blame for it.

Those of you on 6MP know it requires you to get monthly or even bimonthy (depending on your dosage) very specific blood work, and for me the bills were really adding up at more than $350 for each I couldn't afford it and I went 2 weeks without my medicine (note: other people's experiences may be different due to insurance selections, this just happens to be the monthly price I have to pay). I didn't realize just how dependent I was on this medication and went into a severe flare up. I just can't seem to knock it, even after a heavy round of steroids and staying on these two drugs. And so I am coming here for support, because at this point, it's been frustrating not to blame myself, and it's hard to be positive and look towards the future especially as we enter the holiday season.

Everyone here knows how difficult that time is after you realize your first round of 'roids aren't going to take, the thought of a second and probably third round is exhausting and for me so frustrating, and it's in this difficult time that it will be great to get to know others' stories so that I can know I am not the only one experiencing this.

Thanks. Look forward to reading everyone's posts

 

[muppet]

I can sort of relate to the psoriasis. When I was a boy, Asulfasalazine was the only drug available for Crohn's/UC, more or less, and it used to give me terrible excema. My fingers would peel and bleed and I'd have to peel them apart in the morning and go to school looking like a leper. I'd wind toilet paper around my fingers to absorb the weeping from the wounds. My parents had no idea what to do about it so they did nothing. It seems so odd to me now that it was allowed to go on and on without treatment but they must have been overwhelmed with my Crohn's, asthma, epilepsy (would later be revealed that this was due to the asthma drugs), excema (due to the Crohn's drugs), etc.

It can get pretty rough. Especially during holidays when you're expected to be social, eat rich foods, on and on. Hang in there. Lots of people here know what you're going through.

 

[Judith]

Welcome to Crohnsforum wsb200. I am so sorry you are having to deal with so many health problems. I hope we are able to help!

I am thrilled you have decided to join us. I am curious if this information from our wiki page might help out with your monetary situation with the meds and health insurance etc.
[wiki]Social Security Disability Benefits[/wiki]
Welcome!

 

[David]

Hey wsb and welcome to the community. I'm sorry you're back in a flare, that's rough

It's always so frustrating to me when I hear about issues like this when it's monetary related. It is NOT your fault. If you have financial issues you have financial issues. What it comes down to is the healthcare system in this country is broken.

Out of curiosity, what dose of steroids do they have you on, what is your azathioprine dose, and how long have you been back on the azathioprine?

Again, welcome! We're here for you.

 

[wsb200]

Hi all, thanks for the support and kinds words! It really means a lot. I had only done one round of Remicade treatments, and I was having very adverse reactions to the drugs - I had a complete psoriasis outbreak so I had to stop that treatment. This is such a disappointment because I know many people who have had much success on the drug. I may try it again in a year or two, but it makes me hesitant.

I am now back on steroids at 80 mg a day and taking 100 mg of 6MP as well. I am hoping this second round of steroid treatment will do the trick. Fingers crossed. Once I taper off the steroids my doctor has me on the 6mp 100mg a day indefinitely. Through this whole insurance debacle, she was able to switch my lab clinic so she was able to find a way to save me money on my monthly labs. I just wished we were able to do that before I flared up, but I suppose lesson learned. For now I can only look forward and hope in time as they say "it will get better." And in the meantime, I've enjoyed reading others' stories like mine on this site

 

[afidz]

Hello and welcome!
Sorry to here about your double diagnosis, I imagine that it was very hard to deal with both times. I know you said Remicade didn't work for you, but have you tried Humira? I know Humira is also used for plaque psoriasis, RA and Crohn's. Maybe you can kill 2 birds with one stone? Don't blame your self for your recent flare up, I think we have all been there. Everything involved with Crohn's is so expensive. Like David suggested, look into filing for disability. I don't know very much about the area you live in but in the Dallas area there is a state run agency meant to help people with illnesses by helping with your bills and food. Maybe there is something in California that is similar.
I hope you go back in remission soon, stay positive!!

 

[StaceyQ]

Welcome to the forum xx we are all here for support and help x