Medication or something else

[wrknwmn]

I started on remicade for Fistualizng Crohns and U Colitis. On day 9 of treatment 1, I got a rash all over since then I have continued to have dry flushing on my arms, neck, face and legs, which comes and goes throughout the day.  It does not itch, nor is it scaly at all. I have received treatment 2, 7 days ago and have continued to have the flushing along with, exhaustion- all I want to do is sleep, weakness (especially in arms), mild fevers, Overall a genuine feeling of poor health. Dr. is unsure if it is the remicade or something else is going on. Cant rule out remicade, but the reactions unually subside within a few days and mine have continued. I am not sure what to do to feel better and am not getting any direction, other than ride it out. Any input or suggestions would be so helpful and I would appreciate it.

[CBracch]

Re concerneddaughter's comments on alternative treatments. My family all went to the same GI Doc for 40 years, until he recently retired. A big advocate of combining traditional and alternative therapies. He's got some very, very good information on Crohn's on his site at http://www.jacksongi.com/DISEASES/Crohns-Disease/Crohns_Disease.aspx. Links within this article to a Crohn's dietary guideline that my daughter has followed to great impact. AND discussion of alternative methods as well, including prebiotic fiber supplements, which he seems to be a big believer in.

[concerneddaughter61]

My son is 18 and was diagnosed at 14.  He had a really rough time.  This totally changed his life.  Before he came down with Crohn's he was a happy, energetic, popular athlete.  After he got sick he had to drop all the sports and his friends withdrew because they didn't understand.  He tried Pentasa, Sypro, 6mp and 6mp with Remicade.  We dropped the 6mp after the deaths of boys his age on both.  The other drugs made him vomit.  Remicade gave him his life back for the last few years (he plays sports again and has a lot of friends now) but he had to go off when he developed this fatigue and found that he had built up antibodies.  The CCFA has a camp for kids that really helped him and his church youth group pulled him through the rough times.

I would ask to be tested for TB again.  You can still develop it on Remicade (they tested my son prior and then just recently).  Look up Remicade on WebMD and go through all the possible side effects.  I am your age and it would be really tough getting through the day feeling like that.  There are other drugs out there that might make you feel better.  My son will probably go on Humira.  I'm also a big believer in alternative medicine, but I can't convince my son.  I know two people on probiotics doing well.  Read Patient Heal Thyself (Chron's patient almost died).  Try drinking lots of Activa yogurt or try probiotics.  I believe the reason Crohn's exists is we have killed all the good bacteria and we have nothing to fight the bad bacteria, otherwise why doesn't it exist in third world countries?

Don't give up keep pushing your doctor and keep reading up on this.

[wrknwmn]

They tested me for TB prior to starting Remicade, which was negative. How old is your Son? I was diagnosed in 2004 and it has been a struggle.I have had 7 abscesses that have put me in the hospital and I have had problems on every medication. I am 46 and my life has been altered to say the least, so my heart goes out to younger people. My mind still wants to go, go, go and my body will not cooperate, so I dont know how the younger group deal with this.

[concerneddaughter61]

My son has been ill since last fall so I have done a lot of research on Remicade.  Look up Lupus, see if your symptoms match.  Remicade can cause Lupus and a Lupus like conditon.  They can do an ANA test for this.  My son's was negative.  Symptoms are butterfly rash on cheeks, fatigue, joint pain, etc.  This drug can also make you more receptive to opportunistic diseases, for example I am having my son tested right now for Histoplasmosis (240 cases on Remicade) you get it from bird droppings.  I pulled all the things this drug can cause and one by one we ran tests.  The only thing we have came up with is perhaps Serum Sickness, but we are going to Mayo to get more answers.  If you haven't been tested for TB that is a must.  They put it in your arm and you come back a couple of days later to see if you have swelling.  You know your body, don't ignore these symptoms keep pushing the doctors or find a new doctor to take you more seriously.

I understand how frustrating this is.  My son has been dealing with just the fatigue for 5 months, I just keep telling him don't give up we will figure this out.  This is a very strong drug, it works wonders but also can have some very serious side effects.

[wrknwmn]

Thank you. I received a copy of the blood work they did yesterday and I have a high WBC. I called my Dr office and the nurse said she spoke to the Dr and it was nothing to be concerned with, which is odd considering my history of recurring infection and 7 previous abcesses. I am at my wits end with this.

[concerneddaughter61]

My son was on Remicade for 3 years.  We are going to Mayo Clinic next month due to ongoing fatique.  You need to read up on this drug.  It was very helpful in controlling my son's crohn's but he developed antibodies.   I would be concerned about the temperatures.  Get a second opinion from someone that sees a lot of patients.  It sounds like you are having a reaction to this drug.    Good luck, don't ignore these symptoms.