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No immune system OR controlled inflammation?

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Ulcerative Colitis
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Posted 12/1/2012 12:37 AM (GMT 0)
I'm sick again!!!!!! I cannot seem to get well on 6MP. I get virus after virus after virus. I got up this morning and could not swallow bc my throat was sore. I have a GI doctor's appointment on Monday....I have been sick for about six weeks now....no kidding...two courses of prednisone (asthma/respiratory infection) and one antibiotic. Which option is better - being sick ALL THE TIME with controlled colon inflammation OR well with inflammation? I'm not sure what to do.....I used hand sanitizer like a million times today!!!!
Posted 12/1/2012 12:43 AM (GMT 0)
I have chosen controlled inflammation. I have had UC for a little over two years and I refuse to do pred, the immunemodulators or biologics. It's just not worth it to me. There are even worse things that can happen to you than what you are going through, much worse.
Posted 12/1/2012 12:51 AM (GMT 0)
Well, I'm on one of the immunomodulators....6MP, which I would prefer not to be on. When you say much worse could happen do you mean lose my colon? Or you mean much worse side effects from Remicade?
Posted 12/1/2012 2:53 AM (GMT 0)
I'm not talking side effects. I'm talking cancer and death. Any immunosuppressive increases your chances of cells growing out of control and giving you some type of cancer. Leukemia is the most common in immunosuppressed patients. That's a little tidbit they don't usually hype up too much. There are many other bad possibilities as well that are more than just side effects. Some of them can be permantent "side effects" plus life threatening infections. I personally know a girl who was on Humira for arthritis and had a life threatening infection they had to do surgery on to remove. A lot of people don't have anything really bad happen to them while taking these meds but you tend not to hear about the ones who did, like coming up with leukemia.
Posted 12/1/2012 3:09 AM (GMT 0)
I think you might change your mind about taking a biologic or an immunosuppressive drug if your flare was out of control. I'd like to keep my colon ,if I can. I was about to loose my mind before going on Humira. Went into the GI's office crying out of control. I'm sure Madpotter wasnt taking 6MP for the fun of it!
Sorry your feeling so sick Madpotter . Hope your better soon!
Faith
Posted 12/1/2012 3:17 AM (GMT 0)
"I'm sure Madpotter wasnt taking 6MP for the fun of it! "

i don't see where gary even remotely eluded to that -

she did ask for opinions -
Posted 12/1/2012 3:29 AM (GMT 0)
I know there are many who are very negative on certain drugs. When I read his post that's how I took it. I wish I wasn't taking anything stronger then some supplements or some diet. I guess Im not one of the lucky ones. I sure did try. I too read all the side effects the were on the Humira package before taking it.
Posted 12/1/2012 6:26 AM (GMT 0)
This question is VERY tricky. Controlled inflammation is one thing... but the risk of a horrendous flare is another. I'm on Remicade. I avoided it for three years because of the risks of cancer. Then in January I had my worst flare ever. It came out of nowhere, and my colon became so filled with ulcers that I had pains more severe than I had ever experienced before, and was out of work for almost a month. I didn't want surgery, so Remicade suddenly sounded great.

Now... I've had low grade fevers for three months, and just recently found out that it's most likely mono. I've already had mono before, a year ago, so the drugs I would guess allowed it to come back. If it persists I would take a break from the drugs, because I cannot live like this either. I have a call in to my GI doctor to decide whether or not to go through with my next infusion in about 10 days.

My vote would be that if the inflammation was truly "controlled", that it would be preferable to have only mild UC symptoms and not be sick constantly. It's a quality of life issue, mixed with a cost/benefit analysis of the future. Inflammation can lead to cancer possibly. But, if the inflammation is not bad, and your quality of life is better than it is on the drugs... then that's the way to go.

I would try LDN. That drug looks promising, perhaps mixed with a less risky drug like a mesalamine if you can handle it.
Posted 12/1/2012 6:55 AM (GMT 0)
Gary, so you are saying I should stop 6MP bc it can cause other types of cancer other than colon cancer?

Thoreau, I think I'll talk to my doctor on Monday about getting off 6MP and doing LDN. I just cannot handle being sick this much....but I don't want ongoing inflammation bc I know it leads to colon cancer and it already runs in my family. Ughhhh!!!!! So frustrating this darn disease!
Posted 12/1/2012 1:50 PM (GMT 0)
Madpotter: I was merely responding to the subject line of your original post - "No immune system or controlled inflammation?". With those two choices I would definetly recommend controlled inflammation over the meriad of bad "side effects(including no immune system)" of those drugs". In fact, that is exactly the choice I have made. There are a lot of choices you have to make with this disease and a lot of weighing of the pros and cons. Some people who are in really bad shape have different weights to their pros and cons. Many people tolerate these drugs fairly ok and do not get any life threatening reactions or "side effects". But, the statistics show that some do get leukemia or other cancers, and a meriad of other really bad things, some permanent in nature. It seems to me like both the patients and the doctors don't give these things as much weight as they should, merely thinking that those things are only a 1% possibility, or whatever the percent is. 1% of a million people is 10,000 so the question is, is it worth taking this med to control your UC and take the chance that you will not be one of the 10,000 people who will develop cancer from the med? Hindsight is 20/20. Millions of people choose the meds to control their UC and hope that they will not be one of those 10,000 but I'm willing to bet that if you had a crystal ball and new ahead of time that 6mp or another med would definetly give you cancer in less than five years you would never do it. And, if you are one of the unlucky ones, you will wind up having to be taken off of the med which controlled your UC but gave you cancer so that the last years of your life will be very miserable indeed, having to deal with both issues at the same time.
Posted 12/1/2012 2:59 PM (GMT 0)
Madpotter- I have been lucky and haven't gotten sick much since being diagnosed almost 4 years ago. I had one bad cold two months ago but hadn't had one for almost 2 years. I take 4000 IU vitamin D3 because my level is low. Vitamin D is supposed to help with your immune system. Maybe that has helped me? Who knows. I would like to think so. Granted I'm not on the big guns drugs but I am around a 5 year old who is sick every other week with something. Just a thought of something that might help.
Posted 12/1/2012 3:40 PM (GMT 0)
LDN isn't very mainstream yet, and it isn't very proven. So, you'll need to approach the doctor with some evidence that it may work. Research it and bring along at the very least the study that was done at Penn State by Dr. Jill Smith. Plus, you'll need to know where to have it compounded at... and at what dosage (it's not readily available in the dosage that people are finding results with in IBD). BUT, it is FDA approved at a much higher dose for other treatments, so your doctor should at least feel safe that it is not going to harm you.

Fecal Transplant is another option, but again... it's not mainstream. You'd probably end up having to try it on your own.

Let your doctor know why you are so concerned about the medicine you're on. There are other options, such as cutting that dose down. Your doctor will want to do something more mainstream like that, I'm almost positive. You may be able to reach some sort of compromise with the doctor though, such as trying to incorporate LDN along with another medicinal therapy of some sort.

Since I'm in the same sort of boat I can say that my case manager nurse at my GI clinic is NOT very sympathetic to the fact that I'm sick all the time due to immune suppression. I need professionals on my side though, so I have to very non-aggressively assert myself with them.

I guess what I'm saying is feel it out with your doctor, and make sure they know how poor your quality of life is due to getting sick so often. I'm afraid they may scoff at the idea of LDN, or they may readily allow you to try it. It's hit and miss with doctors. Just keep trying until you find some way of treating yourself that allows for a good quality of life.
Posted 12/1/2012 4:04 PM (GMT 0)
Holly -

wish i had the RIGHT answer for you - i don't - it's all up to you to decide - and you know that - i'm pretty much anti drug - always have been - maybe cuz i was kinda sickly as a kid, and was always taking some kind of meds, as i became an adult i was tired of it -

i have almost 10 years into this thing - it hasn't been easy at all, but i've avoided all the big guns other than pred, and that was only twice for the usual 2-3 month taper -

i'm glad i did what i did, but i certainly don't think it would work for every one -
Posted 12/1/2012 4:42 PM (GMT 0)
Gary, I know what your are saying. It took me an entire year to agree to 6MP. It got to the point of never ending inflammation (2 year flare)...diet mods didn't work, etc. I started getting desperate to control inflammation and given my family history of colon cancer I decided it was time to try to control inflammation.

Thoreau, my doctor already agreed to LDN. He's a professor and stays abreast of all the studies. He has no problem with LDN, except like you said it doesn't have much research behind it. My doctor's area of interest is "novel therapy" so he has been the one to recommend SCD, Maker's Diet, etc. He thinks since only one female got T-cell lymphoma in the 6MP study my chances are even smaller.

Soystud, I was a sickly child, too. Interesting we both were....I have been against taking medicine for a long time bc I took so much as a kid. I was on tons of asthma meds for years including prednisone. I usually won't even take Tylenol for a headache. It's been hard to accept medication being my new way of life now. I've even had to add several asthma meds now that 6MP has me getting sick. I take two inhalers three times a day to control lung inflammation. My lung capacity is only half of what it should be. I kind of wish I would have taken meds to control lung inflammation all along because now I may never regain that capacity....they call it "remodeling" in the lungs where they change to adapt to inflammation. So, I'm becoming more open to meds now.
Posted 12/1/2012 6:29 PM (GMT 0)
Holly:
It's defintely a personal choice. I wasn't really up to date on your history. Obviously you thought about it quite a bit and in the end you felt it was worth the shot. I think you handled the decision quite well and now have to decide if it is still worth it. Only you can decide that. I may also have misunderstood your post. I thought what you were saying was that you had a history of being able to control your inflammation but could not achieve remission, decided on the 6mp to attempt remission, but now you were wondering if it was the right decision and that maybe it was just better to go with controlled inflammation instead of attempting remission and being sick all of the time. In that case I would go with not using the 6MP but if you had constant uncontrollable inflammation before the 6MP then that is a different scenario. I do however, think that there are too many people who aren't really in bad shape who are so obsessed with being cured or going into remission that they do not give the proper weight to the dangers of these drugs. I also don't think the doctors give enough weight to them as well. It's easy for them to prescribe something because they don't have to live with the consequences, you do. Doctors often don't really mention the bad possibilities of these things or if they do they just kind of laugh it off as being just 1% of people have bad reactions to the meds. If every time a doctor talked to a patient about putting them on some bad med and the doctor told their patient that over 10,000 people develped some kind of cancer taking the drug most patients would say, "hell no, I don't want that!". But instead the doctors may (or may not) say that the percentages of coming down with cancer due to the med are only about 1% so it's really a pretty small risk.
Posted 12/1/2012 8:01 PM (GMT 0)
I was at a crossroads with starting 6mp and abandoning mesalamines -- in a bad flare, and the doctor did not tell me the risks of 6mp. I learned about them when I was asked to sign a form saying I understood the risks. When I saw them, plus the symptoms of fatigue and getting sick more often, I thought I'd give mesalamines or controlled inflammation another try. It's been a lot of work to manage this with the controlled inflammation approach, and you sometimes wonder if it's worth it. But I really don't like how my doctor minimized the risk. I quickly switched docs.
Posted Yesterday 1:41 AM (GMT 0)
i REALLY REALLY REALLY hate getting old - but one of the benefits that i recieved is a different pair of eyes - the current ones see dr's as what they are - just like me - some a little smarter, but mostly with skills in an area i don't have - i know for a fact that there are many things that i do well, that any number of dr's couldn't do if their life depended on it - doesn't make me better than them -

i have met some really wonderful docs over the years - but i've also met a bunch of incompetent dickheads - at least now it's much easier to tell the difference -
Posted Yesterday 2:50 AM (GMT 0)

garylouisville said...
I have chosen controlled inflammation. I have had UC for a little over two years and I refuse to do pred, the immunemodulators or biologics. It's just not worth it to me. There are even worse things that can happen to you than what you are going through, much worse.


It's nice to see someone else that feels this way. I have done prednisone a lot in the past, and also recently did remicaide. I just don't feel comfortable taking them anymore but no one can understand. Not even my husband. I was desperate and started prednisone for 4 days, the headaches, stomach and leg cramps were immediate, and I caught a cold. Just not worth it. This flare is rough too, but I'm going to tell my GI that I'm taking the prednisone just so I can get a prescription for some type of mesalamine (long story why I'm not on any-- went off Remicaide and switched GI's so without meds)
Posted Yesterday 5:05 AM (GMT 0)
Jouney2Health, my experience was very different than yours...my doctor started the conversation about Aza/6MP by saying its a chemo drug developed to treat cancer patients, it will increase my chances of lymphoma and suppress my immune system. He basically scared the bejesus out of me!!! I was tearing up and said I wasn't ready for this medicine. He was very patient about my decision and entertained all my suggestions for other treatments. It took a year....my mom had also died a month before that conversation from cancer (and I took care of her). It was a very hard pill to swallow so to speak. In other words, my doctor was very straight forward about the risks.
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