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taste05
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/19/2010 6:02 PM (GMT -7)   
Let me introduce myself.  I am new to the forum and hope to find a lot of helpful information.  I was diagnosed with Crohn's Disease at the age of 15.  I am now 27.  I have had no surgeries as of yet crossess fingers.  I was under the care of a gastroenterologist for the last 3 years who had me on 400 mg of Asacol three pills two times a day.  I am still taking my Asacol, but am no longer under his care as I have relocated out of the area.  With that said in April I had a flare up and he put me on prednisone and tried to get my insurance to approve remicade infusion.  Insurance company denied remicade infusion due to no long term prednisone usage.  I am sure I am not the only one who hates prednisone and its side effects.  I blow up like a baloon from taking it, and also break out with the acne.  I can say it does help however.  I am now without insurance due to being unemployed and do not have a new gastroenterologist in my new area which is St Petersburg Florida.  I do have enough Asacol to last me another 3 months however, and I do have some prednisone left over from the last time I was on it in April.  I am currently experiencing a flare up and am wondering if I should start the prednisone once again at the 40 mg dosage he had me on and taper it off as he did?  Any suggestions would be great.  Also is anybody familiar with an herbal product called Roberts Formula which is supposed to help Crohn's Disease and the digestive system?  I would be interested in hearing about this or any other natural possibilities.  

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8546
   Posted 7/19/2010 6:31 PM (GMT -7)   
Urgh, what a rotten reason to be refused Remicade. Prednisone is horrendous stuff to be on long-term and should be avoided as much as humanly possible. (Not talking about short-term courses.)

*reads on* Ack. Sorry about the unemployment and lack of insurance.

Re the prednisone. I dunno. I think it would be a bit dodgy to go on it without the approval of a doctor. I'm not sure I would do it, even though I've been on prednisone 3x and Entocort 1x and could taper with my eyes closed by now. Do you have a GP (or PCP) you can go to? You really need a GI for treatment of Crohn's though. Not being American, I don't know easy it is to see one without insurance...

Not heard of Roberts Formula. Upon a very quick google it was pretty much as I expected it to be. I retain a deep sceptism about herbal products. If you can afford it easily, I suppose it does no harm to try it. If you can't afford it easily, I would save your money.

Oh. Welcome to HW by the way ;p

grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 7/19/2010 7:24 PM (GMT -7)   
Hi Taste, welcome to the forum! I'm sure you will find lots of helpful info here.

I have been in your shoes several times, flaring and not having insurance. It sucks. I put up with a flare for over 3 years, went to the emergency room and was admitted and released 3 days later with Entocort and than couldn't afford to renew the script. Went another year, finally changed jobs so I could get insurance, and the Dr. ended up perforating my colon during the colonoscopy because of all the inflamation and narrowing I had going on for letting it go for so long. I ended up in the hospital getting an emergency resection.

I'm telling you this only because if I was in your situation, and knowing what I know now, I would have done whatever I could to help stop the flare, even going on the dreaded pred. I'm not a Dr and I really recommend you see one, but you are the only one who knows your situation. Do you have enough pred to start off and taper safely? How comfortable and confident are you about taking the pred without Dr. supervision? Is there a free clinic or a teaching hospital that you might visit at a reduced price?

All I can say is I have a stock pile of pred if there ever comes a time I am in that situation again.

Good luck!
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


taste05
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/20/2010 3:53 AM (GMT -7)   
I do believe I have enough knowledge on how to taper off of the prednisone. He had me on it for two months at 40 mg, and around the last month we started to taper it off going down 5 mg every 5 days. I do have enough prednisone to go through this process as well as a refill for the prednisone although I am not so sure how much it cost, but I am sure I could pay for it if I absolutely needed to do so. I am in the process of interviewing for jobs and trying to get a guaranteed issued health insurance policy in the mean time, but having some problems with that process. Hopefully everything will come together so I can see a gastroenterologist. I am having the abdominal pain but the diarreah has yet to start like it normally does, so maybe just in the beginning phase. But I can't eat anything solid without some sort of discomfort. Also put myself on the liquid diet already and plan to do that for a week. Look forward to hearing from anybody else. Thanks for the welcomes.
Diagnosed with Crohn's Disease in 1996.  Take Asacol 400 mg 3 pills twice a day. 


kazbern
Veteran Member


Date Joined May 2010
Total Posts : 8375
   Posted 7/20/2010 1:32 PM (GMT -7)   
Depending on how serious the flare is, I'm not sure a 40 mg dose would be enough to get you over the worst and also do a proper taper. Prednisone is CHEAP. It's the doctor's visit that is not cheap. What are you able to put toward a doctor visit? It seems like a regular visit with a DR you've already met with shouldn't cost you more than $150. I guess there would be bloodwork too, which might add up fast, but perhaps you could figure out that with the DR's help. Personally, I would schedule a talk with the doc.
 
If you haven't initiated a relationship with a new GI, I would call your old one and do a phone consult.  You can get lab work done locally and have it sent to the old doc, and he should be able to call you in a prescripton to a local pharmacy.

taste05
New Member


Date Joined Jul 2010
Total Posts : 4
   Posted 7/20/2010 4:51 PM (GMT -7)   
Hmmm not so sure the last flare up I had he had me on that 40 mg dosage and it did help a whole lot during that time I was having diarreah 6 times a day or more. I may contact him tomorrow via the telephone because I have yet to establish a relationship with a GI here as of yet. He also was pretty easy to get along with so I think he will be willing to help me out.
Diagnosed with Crohn's Disease in 1996.  Take Asacol 400 mg 3 pills twice a day. 

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