Hey all new to the forum

So simply here is my story. 

Dx w/CD 12 years ago never was put on meds.  Occassionally Prednisone step-down when I had minor flares but other than that I adjusted my diet and tried to modify my behavior (keeping stress low, etc.).  In 2007 I was hospitalized for a severe flare that my now GI thought that I might have to have surgery for.  I said BS and listened and agreed to his game plan for meds and keeping me in remission (or at least from making 5-7 trips to the restoom daily).  He put me on Pentasa 3 grams per day and that was all.  The occassional Entocort treatment and cipro/Flagyl combo as needed for minor flares.  Entocort because he does not like prednisone.  So due to several minor flares last year he figured that I should be on Imuran.  I said NO WAY.  I know the potential side effects and he said to think about it and let him know when/if I was ready.  Well needless to say I accepted his invitation.

So all was well and good for about a month and a half while I started the new "miracle" drug and then it happened.  I went to work and a coworker was not feeling well.  Slight cough.  By the end of the day I started coughing.  By the end of the next day I had bronchitis and 2 days later I was admitted to the hsopital with full on pneumonia.  Spent a week in the hospital with so many types of antibiotics and anti everything.  I was confined to my bed for the first three days becasue of all the meds they were giving me.  And it was at that point that I decided that I was not willing to continue with the Imuran if that BS was going to continue to happen.

It is worth noting that I did seek medical attention for the bronchitis and that I stopped taking the Imuran that first day.

Any sugggestions/advice.

I agree with Randy, I think it was just a coincendence you got sick right at the same time as you started Imuran. Many folks on this forum have had their Crohns successfully maintained for up 10 years or more by taking Imuran or its sister med 6mp. You really should be on some kind of maintainence med at all time. While you are busy trying to ignore your Crohns, it is still doing its damage on a microscopic level. I learned that the hard way because I did much like you are and I ended up with an emergency resection because of a completely obstructed bowel. Had no clues beforehand that that was going to happen either. I hope you will get back on the medications soon or your GI will be right and you will end up having to go under the knife. Good luck!

Welcome Navalcorpsman!

I wonder about how much 6MP actually supresses our immune system. If CD is an auto-imune disease, then is the 6MP just lowering it from sky-high back down to the normal range? I remember reading other posts about the H1N1 and several people said they didn't get sick more frequently when on 6MP. Any thoughts?

 I completely understand about needing to have something that puts my CD in remission.  The problem that I have is that when I took the Imuran for the month and a half that I was on it my neutrophil count dropped to 22 (this is verified by blood draws in the hospital while I had pneumonia).  Ones neutophil count should be around 50.  Now knowing that I was on an immunosuppressnent I understand and expected a drop in the white blood cells (since they are the ones that help to fight infections; among other things). 

While I was on the meds (Imuran) I experienced a normalcy to life that I had not experienced in the last 14 years.  But the hospital visit and subsequent low neutrophil count scared me.

I saw a GI doc a number of years ago that stated as long as I watched what I ate and kept my stress low then surgeries were not in my future.  He did not believe in medds unitl someone really needed it.  Over the last 14 years I have been treating minor flares with Prednisone 10 mg in a step down manner (3 for 5, 2 for 5, and 1 for 5).  This seemed to work well and I would then modify my diet and restrict myself until I was sure that the flare was over.

I completely understand about the microscopic level as some have stated.  However, upon completion of my scopes everything is still holding steady in my ileum and not spreading.  With no signs of any serious abnormalities (e.g strictures, fistulas, tears, etc.).  I do have some scarring but from what my current GI has told me it is to be expected with CD.

So here is what I have decided.  I am going to talk to my GI next week.  Stay off the Imuran until then and then hopefully we can work something out.

Oh, by the way.  The type of pneumonia that I had was chlamydia pneumonia.  Not the same chlamydia associated with an STD.  Upon current blood work to see my antibody levels....................I have none.

Nanners specifically.  While you generalize my situation as ignoring my CD, I in fact am not.  I, as well as most that are in similar disease states CD or not, only want whats best for themselves/ourselves.  No more no less.  What may have worked for some may not work for others.  The fact that Imuran reduced my neutrophil count to less than half in a matter of a month or so is freaky enough but then to find out that I did not develop antibodies to the pneumonia (benefits of the Imuran  ) is peculiar to say the least.

Ivy6 I appreciate the inquiry. I suppose the only answer I can give is that I am searching for what is right for me. In an open, unobtrusive environment. Whether that entails advice, guidance or just simple discussion.

Thanks for that, corpsman.

I agree with the others that some sort of maintenance med is important.

There are injections that can help neutrophilia (sp?), if this is something that concerns you. You might like to discuss this with your doctor.

My diet varies.  I eat mostly non beef protein sources, I limit roughage (fruits/vegatables) as those tend to send me into a terror.  I eat more frequent small meals daily. When I was actively working out (I was an amateur bodybuider for quite a few years) I would supplement my three to four solid meals with liquid protein supplements to make sure that I was getting enough protein.  I have pretty much given up caffeine.  Drink mostly water and sports drinks.  No spicy foods.  Not too much salt (wife monitors that for me).  And as soon as I am cleared from my pulmonologist (following me because of my pneumoniae) to go back to the gym I will.  Its been 3-4 years due to flares, moving, school, work, etc.

 

 

 

 

Keeper said...
Just curious about your diet... What modifications have you made?

Hello Corpman,
While I hate to see you have this disease, but it is always nice to see a fellow sailor. I am not a fan of anything that is not backed up peer reviewed academic journals, so the blue dye recommendation is not something that I would do. However, I do strongly encourage people to stay on top of their blood work, and that does include their vitimen levels (b-12, vit d, Mg, etc), because this can also cause the neutropenia that you discribed. As a Corpman I am sure you know this quite well, but I think this disease contributes to my absent mindedness so I just wanted to make sure I am covering my bases here.

I would also guess that your issues with Immuran (especially given that it take months to reach a theraputic level from my understanding), might be in strong part due to the infection you were exposed too.

I currently take 25 mg injections of MTX weekly (it is a very old drug and people have stayed on it for decades with RA) and have for several years now, it has been the only thing that has put my disease remotely in remission (tried sulfa meds, 6mp, immuran, humira, remicade, etc, but only MTX got down from 30-40 stools a day to about 10-12). Luckily it seems that your disease is not sounding as severe, however I wonder if you have done a recent pill camera, because with that fast of deteriation while it could be just the infection or your reaction to immuran (who knows), but I wonder also if the flare it seems like you were in perhaps contributed to it as well. If I am reading correctly (which I might not be cause sitting in the hospital right now) you feel this made you neutropenic, so the question becomes how do fix this? Is it a symptom of advancing disease or is it the med? I do not know, but I know for awhile (about 6-9 months, this actually did not correlate with the time I was on immuran) I did have to take Neupogen shots due to my crohns was doing all sort funky things with my blood work (I also ended up getting a couple blood transfusions during this time so who knows).

Basically I do agree with the others that you really might want to consider a long term med, but it is your life and your quality of life that is at stake, so do what you think is best. There are alternatives to immuran, and there are treatments for neutropenia, but my main concern is that there is no underlying issue that is causing these other issues, and I hope you get to feeling better soon.

Thanks Nanners for the boost on Vitamin -D.  I can't overstate my level of confidence in Vit-D for helping to prevent infections; especially respiratory.  I hope everyone on the forum will read the current November issue of Consumer Reports "onHealth" mag.  Our disease, as you know, is believed to involve a malfunction of the immune system.  Our Medicines tend to suppress the immune system.  Vitamin D is the key to tuning your immune system up.  It does many other things as Naners said but it really SHINES at keeping you from getting colds and flus.

Navy I am very sorry you are in the Hospital.  Speedy recovery.  I have to disagree with you though about waiting for peer review on my Blue dye theory.  The pharma companies will not pursue this because there is no money to be made.  They can't sell you this stuff for big money because you already have it in your kitchen!  They will not launch a study out of the goodness of their hearts?!  I don't think someone who is in the hospital should try it but someone who is moderately ill with a bit of mucus and bleeding could try it?  What is the risk?  Please take a moment to read this article http://www.wired.com/wiredscience/2009/07/bluerats/   

Someone with a severe flare and leaky gut could turn blue from this perhaps and shouldn't try it without medical supervision.  Otherwise you should not turn blue, I haven't.  The rats were given the dye intravenously.  I take it orally.  So what is the risk?    Same as blue gatorade, blue jello, blue ice pops and also ANY green food has the same blue1 dye in it along with yellow dye.  By adding the dye to the water yourself, you cut out the sugar and high fructose corn syrup which is not good for us.

Any one who wants to try blue dye should Ask your doctor if you can safely try the blue dye.     Try it for a week? 

I found out about blue dye the same way I found out about Vitamin -D, by reading Science News and finding a provactive article that addressed what was wrong with me.  Two years later Vita-D is gaining more and more support from SCIENTIST not sales folks.  SURE I COULD BE WRONG about THIS BLUE DYE, that is why we need to get some people to try it with their doctors approval.  Vitamin -D is a no-brainer.  Read the article.  I will be glad to mail you a copy of mine if you wish.    Guy

Excellent info Former.  Just to add, since many of us have RA: "Other population data suggest that as vitamin D levels go down the risk of rheumatoid arthritis goes up"  Consumers Reports On Health magazine November 2009

Imuran made me sicker than a dog,so my doctor switched me to 6mp,
and I tolerated that much better.
Been on 6mp for over 10 years,with no side effects.
My biggest fear is what my immune system would do if I stopped.
People all around me at work are sick all the time,coughing,sneezing,
out sick, all the time.(they all have young children,and we work at a college campus)