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side effects of "biologics"

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Crohn's Disease
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Posted 11/23/2008 9:13 PM (GMT 0)
I've pretty much been in a constant flare for almost 4 yrs now with my poor kids having to watch this.  I've tried everything under the sun, but I finally drew the line after the Remicade side effects.  I'm done with conventional "biologics" (nice word for chemo).  Anyway, my daughter called me from college freaking out saying "Mom, does Crohn's cause lymphoma?  Her friend's boyfriend (age 19) went from Remicade to Humira, was OK for a year and started college.  He now is in the hospital diagnosed with lymphoma.  They are not expecting him to make it.  My daughter is so upset since she knows that I was on Remicade and had to quit because my lymph nodes in my neck, under my arms and in the groin grew to the size of lemons...and so painful.  Has anyone else decided that the risks are too great for these drugs?  I'm just going to try to manage it on my own and be thankful for the good days I do get occasionally. 
Posted 11/23/2008 10:26 PM (GMT 0)
I tell ya, I'm getting there awfully darn quick! I posted a similar thread not a couple hours ago. I've been on 'Cade for close to 4 years now, and have popped up wtih a low neutrophil count. Until we get that figured out, no more Remicade. Thing is, until I *had* to consider it, I didn't realize that Remicade was really taking a chunk out of my life. Yeah. It worked. It worked admirably; I dodged surgery because of it's reputation for healing fistulas and scar tissue. I just don't know how I feel about it long term any longer.

Even though my infusions were every eight weeks, they took three hours, with a 45 minute trip each way to the infusion center. Then there was the week before the infusion, when I would try to get all the house cleaning done and have some leftovers on hand. This, because for about two days after the infusion (forget the day of!), I'm about useless. I have to sleep it off. So...all teh stuff I would normally get done on the weekend gets shoved to other corners. Then there's the amount of time I worry about paying for Remicade -- the other seven weeks, basically. Every insurance I've had has argued about paying for it -- whether it's a pharmaceutical or a procedure or what. Patient assistance gives you the drug, but the nurse's time is like $500. It's overwhelming.

I'm looking into some alternatives. Feel free to email.

As for your daughter. How long since you did Remicade? I would encourage you to give the doc a call, get the dirt on lymphoma. It seems like there would be some noticable stuff going wrong if you had lymphoma (I could be wrong). The lymphoma caused by Remicade is pretty vicious from what I understand. Was he also on imuran or another, similar drug? Last news I read was that those who did get lymphoma were on both. I had trouble with imuran causing migraines, and then this came down the pipe, so I quit taking it. In any case -- knowing the truth is always better than what your imagination will come up with. Get the dirt, share it with your daughter.
Posted 11/23/2008 11:50 PM (GMT 0)
Hi Sorry your daughter is so upset and the lymphoma is supposed to be more of a side effect for the young. What did the Dr's say about your swellings? It can be a very worisome thing some of the meds perscibed. I too was on Rem. for six months. lol gail
Posted 11/24/2008 5:22 AM (GMT 0)
I also decided that the risks were too great... I loved Remicade for years, but when I was faced with a switch to Humira - I couldn't do it. Shooting that stuff into my leg was a real wake-up call. So, no more of that biologic stuff for me. I'm going to get some serious food allergy-sensitivity testing done after the new year, and meanwhile I'm having pretty good luck with LDN, probiotics, and digestive enzymes. I'm keeping my fingers crossed that I can stay away from the big nasty biologics! I totally understand your fear and frustration. You're not alone!
Posted 11/24/2008 5:47 AM (GMT 0)
This is a huge concern I have as someone with fairly moderate Crohn's. While I understand we need to be aggressive with this disease, we also don't know how bad the long term effects of such treatment are. I was on Remicade for a year and just started Humira. It has done wonders for my fatigue so far, but I can't tell how it's acting Crohn's wise as I was only having mild issues when I started--my GI just didn't want me to get into a full on flare. For me I hope it's something I can do just to get myself through college (or even just for this year, until I can have my own kitchen again). I do think alternative medicine is worth looking into, and I've done it myself. But at this point in my life, at college where stress is such a trigger, I think this is the right decision to make.
Posted 11/24/2008 6:58 AM (GMT 0)
does anyone know if there's a correlation between long term crohn's use and kidney stone development?
Posted 11/24/2008 2:06 PM (GMT 0)
When the lymp nodes swelled and stayed that what for almost a year I decided to quit the Remicade and go natural. I was on LDN for a year and a half, still on probiotices, digestive enzymes, tried aloe vera with cats claw, etc, everything the homeopathic doctor ordered, you name it, even acupuncture. A recent colonoscopy showed that my colon has shrunk in half due to disease. There's not any healthy tissue left from small instestines, colon to rectum. At times it is even in my mouth and esophagas. I've learned new words like "friability" where areas are so damaged they could perforate. The thing is, I don't feel horrible all the time. My GI can't understand how I'm able to stand the pain, but it's not that painful all the time. My dr. did say that I'm a prime candidate for lymphoma due to how my lymph nodes reacted yet he still pushed for Humira saying that "we'll deal with cancer later". No thanks.
Posted 11/24/2008 9:51 PM (GMT 0)
Hi V things aren't sounding too good in there. Do you take B-12 shots and vitamins? I'am surprised he doen't have you on pred. or has he mentioned if that would help?Are you still on the LDN how did you find that worked? I don't understand why you are not in the hospital if you are in that bad a state.Hope you have a specialist helping you . lol gail
Posted 11/24/2008 11:25 PM (GMT 0)
I've been on Pred., entocort, just about everything. To top it all off, my insurance co is going broke. They haven't paid any bills for me this year and last year it took 10 months for them to pay. I've been paying for everything my self. My dr. sent me to Vanderbilt last June and I had to pay up front. My colonoscopy two weeks ago cost me $2300. See my point.
The LDN, I thought worked after the first month but after a year and a half I was the sickest I've ever been.
Posted 11/25/2008 1:40 AM (GMT 0)

hi there,I only skimmed through some of the comments,have two boys really wanting Mom to look at our new stray cats outside smilewinkgrin    anyhoo,I'm with you guys on the no more TNF blockers,I developed drug induced lupus from the Humira,I am back on my original plan of Asacol and Imuran,hoping it continues to keep me at bay.

Happy Thanksgiving to all :-)

Posted 11/25/2008 1:53 AM (GMT 0)
Hi V How long have you had crohn's? Do you think that the LDN just masked your symnptoms? Do the insurance people compensate you once you have paid them? Have you looked into a different company? Are you on TPN ? Hope you can find something to help you .lol gail

Hi Lynn nice to see you ,how have you been? lol gail
Posted 11/25/2008 10:16 AM (GMT 0)
gachrons: I don't think that the LDN masked my symptoms because it's weird, I'll go from by death bed, literally, then it stops. I had a 104 fever and was on pred and entocort together - seven months I weaned off steroids and began LDN. After six weeks I felt good but that only lasted a month, then three months, sicker than a dog, and finally on TPN, but I wouldn't give up on the LDN. After a year and half I quit the LDN. I don't feel too horrible now, I just have flares that last a couple of weeks then not too bad. I guess I'm getting used to living with it. I have to wear little kids pull ups now!
about the insurance, last year after so long the hospital was going to turn me over to collections, so I paid them. a few months later my ins co. finally paid the hospital and I had a credit balance. So far they haven't reimbursed me for anything. I just got approved through a group policy (my husband is self employed but a member of the Society of Petroeleum Engineers) They'll insure me for $11,000/yr with a $5,000 deductible and not cover any Crohn's charges for two years. That's the only one that would take me at all.
Posted 11/25/2008 6:09 PM (GMT 0)
Gee that doesn't sound the greatest I thought everyone was supposed to get insurance . How long have your bowels been so bad? How much of the TPN do you take?Figure I "ll soon know your life 's story hope you don't mind me asking so many questions but I am concerned about you. I go a little batty over a hemmroid for goodness sakes. How is your daughter doing now ,still finding it hard ?Do you have just the one ? I have one and times that is plenty life's all about the car now.At least it is getting warmer for awhile but I did have fun with the snowthrower. I was always one that loved to get out with the shovel. lol gail
Posted 11/25/2008 7:16 PM (GMT 0)
For me right now Humira is doing well, I worry about long term use of any drug. I was on Imuran, Pentasa and Entocort and they were not doing the job. Plus my B12 levels were dropping due to the Imuran so it was causing me problems. I even had a numb toe (due to low b12) which is now returning to normal since stopping my other meds and going on Humira. With any drug there are risks, for me keeping my disease less active is worth the risk. Everyone has to decide that for themselves. Karen
Posted 11/25/2008 8:59 PM (GMT 0)
This really has been tough on my kids. My daughter is 19 and my son is 17. My son, especially, seems "down". They both worry so much seeing me day after day lying on the couch, my son just isn't as vocal about his worries. My Dr. called my husband a year ago and told him that "it's time to have a talk with your kids, she's not going to make it 2 months". I wish they hadn't done that, since I'm still here. I really try to fake it as much as I can around the kids. It's been a rollercoaster ride the last 8 years, tho. I was diagnosed with Crohn's 13 days after receiving an MMR vaccination (required by local univ. in order to take 1 class). The last four yrs have been in a constant flare, going from D w/ blood 3 or 4 X/day to 20+x/day. The last 2 yrs, since it took over my rectum, colon and small intestines, I've lost all control, hence the pull ups!
The insurance I just got is major medical, just like the one I'm on now, only I hope this one pays the bills. Neither one pays for prescriptions which is why I'm where I am. It's just too expensive and we make too much money to qualify for any assistance. Plus, I've tried everything short of Humira. I just can't accept the possibility of lymphoma considering how I reacted to Remicade. I'm waiting to see if I can get in a research study on stem cell transplants now. That won't require insurance.
Posted 11/25/2008 11:25 PM (GMT 0)
Hi V has your GI recommended stem cell? I have done some reading on it . Is it offered where you are? I am guessing you have done alot of reading up on it. You must have to have infusions do you? I don't have the bleeding but have had a go of the fistula's. I got my B-12 shot today so hope to get some energy. I need to get some bloodwork done to get the thyroid checked. I was reading about it today and I got about 14 of the symnptoms .Gee here I was thinking it was the CD.Hang in there V and keep searching some stuff. Do you have a hospital near that is doing some trials? lol gail
Posted 11/26/2008 12:02 PM (GMT 0)
Hi gachrons My GI is in the process of forwarding my records. So far I meet all the requirements, they just have to verify with their own tests. It's a two year study and I have a 1 in 3 chance of getting a placebo. You can't be on any biologics or steroids, or surgeries in the last six monts, which I qualify. Hope to hear from them soon. You get four infusion in the first two weeks. We'll see and can only hope.
Posted 11/26/2008 3:07 PM (GMT 0)
Hi V you let us know as soon s you hear about it . Did they say when they start? Well lets hope they give you the real thing . lol gail
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