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kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 11/30/2008 5:35 PM (GMT -7)   
Hi  I am new to this site and  crohns in general (my daughter was diagnosed in the spring and is currently coming out of her second (vicious) flare with the help of prednisone) but I am not new to auto-immune deseases as I suffer from several. I have been medicine free for 4 years after appox. 15 years on and off pred. (mostly on)   The last time I was on it I just told my doctor I couldn't do it anymore to please try something different.  My deseases were more blood related and I was seeing a wonderful hemotologist/oncologist.  He started me on IV cytoxin on a regular basis (this is a chemo drug) and eventually tapered.  It took a pretty long time-about 3 years but it totally stopped my immune system from distroying me.  Has anyone tried this drug for crohns.  I know that prednisone is a miracle drug but the physical and emotional side affects are atrocious!  Thanks

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/1/2008 2:37 PM (GMT -7)   
Hi Was wandering whay immune diseases you have and not too familiar with that drug. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 12/1/2008 2:53 PM (GMT -7)   
Hi I have hemolytic anemia (body attacks and kills good red blood cells) ITP-(long difficult to spell disease-but basically body kills off all plateletts so blood will not clot) Thyroid Orbitopothy (attacks the muscles in the back of the eye which causes it to become inflamed, so your vision is blury) and Hypothyroidism. I spent so many years on prednisone I had just had it and asked to please try something. I believe the way some Chemo drugs work is that they basically shut down your immune system. If your immune system is compromised then it can't attack the "good". I know it sounds crazy but I just thought it might have the same affect on IBD's. I just really worry about the effects of all these meds on my daughter because she is still developing, etc. I have also read some things about Lymphoma being caused by some of the drugs used to treat crohns. Anyway---thanks for your reply!

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/1/2008 4:59 PM (GMT -7)   
Welcome to Healing Well, kelliej! I am sorry that both you and your daughter are dealing with chronic diseases. I know how difficult it is to watch one's child deal with a serious medical problem. <<Hugs>> I have three autoimmune diseases myself so understand the prednisone rollercoaster issue. I have avascular necrosis in the top of both femurs, most likely from one of my many stints on prednisone to treat my asthma. I face double hip replacements in the future because of this.

What beside prednisone has your daughter been taking for her Crohn's? Your reference to possible Lymphoma from CD meds refers to Remicade and Humira. Both of these meds are biologic category meds.

Some GIs work from the "bottom up", starting with things like Entocort, Pentasa, Asacol or Sulfasalazine. Then if those don't maintain relief of symptoms, some GIs try flagyl or Cipro, both antibiotics. Then comes the immunomodulators like azathioprine (Imuran, Azasan) and 6-mercaptopurine (6-MP, Purinethol). Then the last tier is the biologic category of drugs like Cimzia, Remicade and Humira and Tysabri.

Other GIs prefer the "top-down" approach to threating Crohn's. They start with the biologics in hope of a quick remission. If a patient has severe Crohn's or fistulizing disease, it is more likely that the GI will recommend starting with the biologics.

I have not heard of anyone being prescribed cytoxan as a treatment for CD. However, that doesn't mean it hasn't been done. Your description of your treatment with cytoxan to "shut down" your immune system is similar to the thought behind the prescribing of azathioprine and 6-MP. Imuran helps modulate the immune system, making it act more normally. In my case, my white count was really high even though I never had an infection. Once I got on Imuran, my WBC is in the normal range. Oddly, I get fewer colds, and viruses too.

Again, welcome to our community. ~~Ides
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/1/2008 5:30 PM (GMT -7)   
As far as I know, chemo (cyclophosphamide) therapies for Crohn's are still in trial, after having shown very promising results in a small trial of Crohn's patients, and with MS patients.

Ivy.
Co-Moderator Crohn's Forum.


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 12/1/2008 5:41 PM (GMT -7)   
She is taking azathioprine, Lialdal, pridnisone, previcid, probiotics and diclofenac for just diagnosed ankylosing spondylitis ( I see that you too have this and it worries me more than the crohns). I think the combo I was worried about for the lymphoma was the azathioprine and lialda so thanks for clearing that up--takes some worry away!!! Any info you have on the Ankylosing Spondylitis would be appreciated. I stopped reading about it because it scared me. How long have you had this and are you in much pain & are you mobile?

Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/1/2008 9:39 PM (GMT -7)   
I believe and my doctors agree that I have likely had AS for sometime. I lived on NSAIDs for years and occasionally went to the doctor for the odd tendonitis type problems that would not resolve. I got a copy of an MRI report from some years ago last year. AS [ankylosing spondylitis] damage was noted on that report. My MD at the time never told me nor referred me to anyone though I had asked for a rheumy referral repeatedly.

I came off all NSAIDs when I was diagnosed with Crohn's. Within 8 months I was unable to navigate without a cane. I am not saying this will happen to your daughter! I had likely had AS for over 20 years. I had enthesitis in practically every tendon plus some significant hip problems from the AS. They started me on Remicade and it was amazing. I got rid of the cane, canceled the hip surgery they had scheduled and no longer needed help dressing. Remicade also put my guts into remission. Remicade gave me life back!

After 2.5 years I had to get off Remicade. Things went down hill in terms of my joints and tendons. I navigate life now okay without assistance. I do get flares in my tendons and SI [sacroiliiac] joints that require steroid injections. I got bad this summer and could only lie down or stand. Riding in a car for more than 10 minutes was torture. Then I had my SI joints injected with cortisone. Made a two day drive and survived. A first for me in years. Now it is wearing off and I can only sit for 20 minutes or so at a time.

Your daughter is young. Many young people with AS do quite well with the right combo of meds. Please don't give up reading about AS. The more you know, the better you can assist your daughter in the decisions that will arise regarding her care. I good, non-hysterical place to learn about AS is at the Spondylitis Association of America's website. There are forums there where you can discuss AS and teens. Several parents there have kids with AS.
SSA


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


kelliej
New Member


Date Joined Nov 2008
Total Posts : 18
   Posted 12/2/2008 4:24 AM (GMT -7)   
Thanks so much for the information. I looked up the website and it is a good source of info too. I wish you the best!!!
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