My 21-year old son was recently diagnosed with severe Crohn's disease in June 2012. He has responded well to taking Cimzia, but I worry about the side effects, lymphoma mostly. I've noticed significant hair loss; and, though, Cimzia looks like it's helping him because he feels really good, I am worried that the hair loss is a sign that the Cimzia is harming him. His doctor is advising him to also begin taking Methotrexate because the combination of the two medications will double how long the Cimzia works. Methotrexate, however, increases the chance of getting lymphoma because both Cimzia and Methotrexate lower a person's immune system. My son also had GI problems when he was 10 years old; and, at that time, a doctor thought he had Crohn's disease. When his father and I took him to get a second opinion because he wasn't getting better with the first doctor, the second doctor told us he definitely did not have Crohn's disease. He didn't take any medications when he was small and never had a problem until now (over 10 years). His current doctors think the second doctor when he was little was wrong, and he's had Crohn's disease since he was 10. His father and I wonder if he can combat his Crohn's disease through diet, since he wasn't on any medication for 10 years and was fine. His doctors, however, insist that he needs to take these medications. The hair loss and possible known side effects are scaring me, and we wonder if he needs to be on them. We worry, of course, that stopping the Cimzia will cause him to have GI problems again. We don't know what we should do! Our son also has had Type 1 diabetes since he was 8 and already has a lowered immune system.
Worried about Side Effects
- Thread starter whattodo?
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So sorry your son finds himself in this position. My son is on remicade another of the biologics and I know the fears of the side effects. I don't know that the side effect of hair loss would confirm the Cimzia is harming him but I know it must be hard to see the med effecting him and worry about the other ways it is effecting him. From the GI's wanting to try the combo it seems they aren't convinced his CD is under control and are still trying to achieve remission.
I can't speak to your sons past dx as such other than to say if his CD is severe and left untreated it can result in some equally fearful outcomes. Maybe you can try a combo of diet, check on Enteral Nutrition, supplements, and meds. Take a browse through our treatment forum as well as our diet forum. I hope your son achieves remission soon.
I can't speak to your sons past dx as such other than to say if his CD is severe and left untreated it can result in some equally fearful outcomes. Maybe you can try a combo of diet, check on Enteral Nutrition, supplements, and meds. Take a browse through our treatment forum as well as our diet forum. I hope your son achieves remission soon.
Thank you, Clash, for your reply. One reason we question the addition of Methotrexate is because my son isn't experiencing any symptoms at all from having Crohn's disease since he's been taking Cimzia alone and appears to be in remission. He says he knows of others who have Crohn's who get stomach pains, and he isn't experiencing any symptoms. His doctor is advising Cimzia since, after time, a person will build up antibodies which will cause it to no longer work. His doctor has told us the combination gives patients the most optimal benefits.
I will be sure to take a look at the treatment and diet forum. I haven't spoken with any one until now that also has a child with Crohn's disease. I hope to continue to be able to speak with you and others. Thank you so much.
I will be sure to take a look at the treatment and diet forum. I haven't spoken with any one until now that also has a child with Crohn's disease. I hope to continue to be able to speak with you and others. Thank you so much.
Perhaps his Crohn's went into remission if he was given some treatment like prednisone. It can also be active but "silent" - causing damage without any obvious symptoms. It's hard to say and doesn't really matter at this point.
Untreated Crohn's can kill him and will almost certainly lead to such a poor quality of life that he is unable to do anything like hold a job or go to school or have any kind of life. Plus he will be in pain and probably require surgery due to blockages and abscesses. It will probably also make it very difficult if not impossible for him to control his diabetes and you know the results of that.
Before these medications became available, the life expectancy for people with Crohn's was as much as 20 years shorter than the normal healthy person. 80% underwent major abdominal surgery, the majority multiple times. Nearly all Crohn's patients survived thanks to prednisone which has devastating long term effects on the body and would certainly complicate his diabetes if he had to use it on a regular basis.
The risks of him getting cancer from these meds is very tiny. Very, very tiny. It is hundreds of times more likely that he will die in a car accident.
The way these meds work is they affect the long acting part of the immune system. The part that fights colds and such isn't really affected in most people. The long acting part is what seems to be a bit haywire in Crohn's. So these meds affect that part of the immune system because it is over-active when it comes to the gut. You can think of it as actually bringing a racing engine back to normal rather than turning it off. He will still have that part of the system functioning. It just won't be over-producing the white blood cells that are causing the problem. In fact, the doctor will be closely monitoring his labs to make sure that his WBC doesn't fall below the normal range, especially when he first starts treatment.
Diet may help him but it is highly unlikely to provide more than temporary relief and help him manage flares that arise despite medications. The exception would be if he tested positive for celiacs in which case he needs to follow a gluten-free diet. However this would not control his Crohn's.
He can try doing exclusive enteral nutrition - only drinking forumla. This is the treatment of choice in many places for children. However it does not appear to be very effective in adults and most people begin to flare again once they go back to regular foods unless they are also on medication.
My advice is that you resign yourself to his needing to be on medication for Crohn's for his life and be thankful there's medication that works for him.
It was very hard for me to come to peace with this myself so please know that I am not lecturing you or trying to make you feel bad. No one was around to tell me these things in a straightforward way when my son was first diagnosed. It might have made our journey shorter - or not. I don't know. I just know that you say your son is feeling great, he is clearly much better and he's lost some hair. Sorry about the hair loss but I'm guessing your son thinks it's a small price to pay.
Best wishes
Untreated Crohn's can kill him and will almost certainly lead to such a poor quality of life that he is unable to do anything like hold a job or go to school or have any kind of life. Plus he will be in pain and probably require surgery due to blockages and abscesses. It will probably also make it very difficult if not impossible for him to control his diabetes and you know the results of that.
Before these medications became available, the life expectancy for people with Crohn's was as much as 20 years shorter than the normal healthy person. 80% underwent major abdominal surgery, the majority multiple times. Nearly all Crohn's patients survived thanks to prednisone which has devastating long term effects on the body and would certainly complicate his diabetes if he had to use it on a regular basis.
The risks of him getting cancer from these meds is very tiny. Very, very tiny. It is hundreds of times more likely that he will die in a car accident.
The way these meds work is they affect the long acting part of the immune system. The part that fights colds and such isn't really affected in most people. The long acting part is what seems to be a bit haywire in Crohn's. So these meds affect that part of the immune system because it is over-active when it comes to the gut. You can think of it as actually bringing a racing engine back to normal rather than turning it off. He will still have that part of the system functioning. It just won't be over-producing the white blood cells that are causing the problem. In fact, the doctor will be closely monitoring his labs to make sure that his WBC doesn't fall below the normal range, especially when he first starts treatment.
Diet may help him but it is highly unlikely to provide more than temporary relief and help him manage flares that arise despite medications. The exception would be if he tested positive for celiacs in which case he needs to follow a gluten-free diet. However this would not control his Crohn's.
He can try doing exclusive enteral nutrition - only drinking forumla. This is the treatment of choice in many places for children. However it does not appear to be very effective in adults and most people begin to flare again once they go back to regular foods unless they are also on medication.
My advice is that you resign yourself to his needing to be on medication for Crohn's for his life and be thankful there's medication that works for him.
It was very hard for me to come to peace with this myself so please know that I am not lecturing you or trying to make you feel bad. No one was around to tell me these things in a straightforward way when my son was first diagnosed. It might have made our journey shorter - or not. I don't know. I just know that you say your son is feeling great, he is clearly much better and he's lost some hair. Sorry about the hair loss but I'm guessing your son thinks it's a small price to pay.
Best wishes
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A train of thought is that one of the immunosuppressants such as 6MP or methotrexate does help to prevent antibodies from building up, this hasn't been an action my son's GI has taken but others on the forum may be able to give more insight. My son's symptoms were are also non existent on Remicade although we are still trying to adjust the dosing schedule to best fit him as 8 weeks between infusions was too long and the symptoms would return.
I'm sure some more experienced posters will be by shortly to give you their experience on treatment with cimzia. We actually have a parents forum you may want to check out, lot of wonderful people in there with kids of all ages, some of which are college age.
I'm sure some more experienced posters will be by shortly to give you their experience on treatment with cimzia. We actually have a parents forum you may want to check out, lot of wonderful people in there with kids of all ages, some of which are college age.
The research evidence has clearly shown that combining biologic medications with either methotrexate or 6-mp is the most effective long term treatment. That's why his doctor wants to add it.
As the doctor told your son, it will almost certainly prolong the time that Cimzia is effective. Since we only have three of these meds at this point and your chance of a good response goes down each time you switch biologics, many doctors believe that it is sound practice to add methotrexate or 6-mp.
As the doctor told your son, it will almost certainly prolong the time that Cimzia is effective. Since we only have three of these meds at this point and your chance of a good response goes down each time you switch biologics, many doctors believe that it is sound practice to add methotrexate or 6-mp.
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Welcome to the forum 
but, I'm sorry that it's your son's illness that brought you here. These meds are so scary, it's so hard to know that our children must take them!
Please do have a look at Enteral Nutrition. It's the treatment that was used to induce remission for my son and has been his maintenance treatment since May 2011 (and has NO side effects). As your son already seems to be in remission, it can be used as a supplemental treatment. Crohsinct's daughter was on remicade (another biologic) and her GI also wanted to add another med, Crohnsinct, instead, added EN as a supplement and it has been enough. It provides necessary nutrition and certain formulas have anti-inflammatory and healing properties. As your son has diabetes, you may have to find a formula that would be compatible. There is a subforum for EN under the treatment section and a thread under this forum, under Diets called Kids on EN with lots of info.
The SCD and Paleo diet are often talked about by various members, many of whom have had some success. There are also members who are on the Clean Eating diet or who have eliminated specific foods that more commonly cause problems, ie gluten or dairy. My son has been told to avoid seeds, nuts ('pieces' of nuts, nut butter is fine) and limit veggie/fruit skins. As Clash suggested, please look through the Diet forum.
Probiotics are also something that many people use as a supplement and very much believe it helps them.
I hope your son continues to do well! :ghug:
but, I'm sorry that it's your son's illness that brought you here. These meds are so scary, it's so hard to know that our children must take them! Please do have a look at Enteral Nutrition. It's the treatment that was used to induce remission for my son and has been his maintenance treatment since May 2011 (and has NO side effects). As your son already seems to be in remission, it can be used as a supplemental treatment. Crohsinct's daughter was on remicade (another biologic) and her GI also wanted to add another med, Crohnsinct, instead, added EN as a supplement and it has been enough. It provides necessary nutrition and certain formulas have anti-inflammatory and healing properties. As your son has diabetes, you may have to find a formula that would be compatible. There is a subforum for EN under the treatment section and a thread under this forum, under Diets called Kids on EN with lots of info.
The SCD and Paleo diet are often talked about by various members, many of whom have had some success. There are also members who are on the Clean Eating diet or who have eliminated specific foods that more commonly cause problems, ie gluten or dairy. My son has been told to avoid seeds, nuts ('pieces' of nuts, nut butter is fine) and limit veggie/fruit skins. As Clash suggested, please look through the Diet forum.
Probiotics are also something that many people use as a supplement and very much believe it helps them.
I hope your son continues to do well! :ghug:
Thank you, Patricia. I know how it feels to resign yourself to something. I went through that process when my son was diagnosed with diabetes when he was a little boy. I had to resign to the fact that his blood sugar readings would not always be in the normal range despite doing everything to keep it in control (frequent blood sugar checks, carbohydrates counting, proper insulin dosage). Despite doing everything right, we still couldn't completely control it because of all the other factors that make it difficult (hormones, stress, excitement, illness, etc.).
What weighs on us in this case is that he was fine for so many years without taking any medication? Thank you so much for your support and advice. Your words and those of others in the same situation are just the help we need in trying to make the right decisions.
What weighs on us in this case is that he was fine for so many years without taking any medication? Thank you so much for your support and advice. Your words and those of others in the same situation are just the help we need in trying to make the right decisions.
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There are only three .
Cimzia , humira and Remicade .
As others have said en can help but does not work as stand alone therapy in adults with cd let alone severe cd.
One thing to think about most Gi do not start on biologics unless things are severe or you have failed other meds.
Your child did not get severe over night .
More than likely things were happening at the cellular level for years.
As far as side effects - ever give your child Tylenol , aspirin , pepto bismol even
Special K cereal can have adverse effects.
In treated severe cd can kill period.
Be glad you caught it.
Be glad he is feeling better.
Risks well hot showers are risky, swimming, car rides, schools , etc...
You already have a risk of lymphoma without taking any meds.
It is just a given.
The numbers are on your side.
Granted last year when DS was dx, I only wanted pentasa and that seemed too risky.
He now takes Remicade since nothing else works. I have see what my son was like on the less risky drugs. Remicade has made such a difference in such a short period of time I am so glad he has it. He is only 8 btw.
Cimzia , humira and Remicade .
As others have said en can help but does not work as stand alone therapy in adults with cd let alone severe cd.
One thing to think about most Gi do not start on biologics unless things are severe or you have failed other meds.
Your child did not get severe over night .
More than likely things were happening at the cellular level for years.
As far as side effects - ever give your child Tylenol , aspirin , pepto bismol even
Special K cereal can have adverse effects.
In treated severe cd can kill period.
Be glad you caught it.
Be glad he is feeling better.
Risks well hot showers are risky, swimming, car rides, schools , etc...
You already have a risk of lymphoma without taking any meds.
It is just a given.
The numbers are on your side.
Granted last year when DS was dx, I only wanted pentasa and that seemed too risky.
He now takes Remicade since nothing else works. I have see what my son was like on the less risky drugs. Remicade has made such a difference in such a short period of time I am so glad he has it. He is only 8 btw.
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En can help with therapy which is what crohninst's child needed BUT.....
It will not lower the risk of developing antibodies to cimzia.
Once you have antibodies the ability for the drug to work has decreased .
It will not lower the risk of developing antibodies to cimzia.
Once you have antibodies the ability for the drug to work has decreased .
DustyKat
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Hi whattodo and :welcome:
I am so sorry to hear about your lad and the difficult time you are having. :hug:
You have already been given fab advice so I will just direct to this article. I hope it answers some of your questions and helps allay the fears about the side effects of these drugs...
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
I would also like to say that I agree about the dangers that under treated or untreated Crohn's poses. Inflammation can simmer away undetected either in blood tests and/or by being asymptomatic and so can lull you into a false sense of security.
Just in regards to the hair loss, what was it that led your son to be diagnosed with Crohn's and how was he physically, condition wise?
Dusty. xxx
I am so sorry to hear about your lad and the difficult time you are having. :hug:
You have already been given fab advice so I will just direct to this article. I hope it answers some of your questions and helps allay the fears about the side effects of these drugs...
http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
I would also like to say that I agree about the dangers that under treated or untreated Crohn's poses. Inflammation can simmer away undetected either in blood tests and/or by being asymptomatic and so can lull you into a false sense of security.
Just in regards to the hair loss, what was it that led your son to be diagnosed with Crohn's and how was he physically, condition wise?
Dusty. xxx
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Hi whattodo, I am so sorry about your son's latest diagnosis of Crohn's; as if he needed more!!
A chronic illness (as you know too well) takes time to adjust to. Take a while and cry lots!! My son was dx at 10 and I also had a very hard time accepting the meds, and still do!! He was first put on Aza and alot of pred. I then added heaps of vitamins and probiotics, which made me feel a little better!! Sometimes Drs want to just treat the cause (the Crohn's) and show little concern for the symptoms. Though it is logical from their standpoint, if you have a child who is struggling with anemia and fatigue from low vitamin levels you want to help them feel better ASAP!! So I would definately look for advice re vitamins and probiotics from these very knowledgeable people!!
Recently I was dropping alot of my son's vitamins and he was getting lax in taking his Aza (purely because he was sick of it and was feeling well) and we paid for it..He was just diagnosed with peri-anal abscesses and we have had to add long term Flagyl to the list!! Argh!! But...I am now happily giving him the tablets, knowing that they do the job for him even though I wish he wasn't on them (if that makes sense!!). I have to say I have re-introduced ALL of his vitamins (he doesn't take iron even though he is extremely anemic as it gives him terrible cramps) and within two weeks he just did his first normal bm in two years!!!!! (last night we celebrated that, sad huh??!!) For me the vitamins help assure me that he is getting what his bodies needs as best as possible. The probiotics help me feel better about his bowel being under so much pressure from the meds. The anti-inflamatories help me feel better about his bowel inflamation. Theliver cleansers help me feel better about the meds!! Are they just a placebo? I don't think so. They have definately helped us IMO. But even if it is just wishful thinking, I feel better knowing I am doing what I can to help my son.
Basically there are people here who have heaps of great experience. Please refer to their advice. I am only 2 years into this journey and have no experience with your son's drug. (I would definately look into the EN people have mentioned.) But I just wanted to let you know that you are sooo not alone. That you are doing great. That we do understand, and we are here for you.
Blessings to you and yours,
Ams xx
A chronic illness (as you know too well) takes time to adjust to. Take a while and cry lots!! My son was dx at 10 and I also had a very hard time accepting the meds, and still do!! He was first put on Aza and alot of pred. I then added heaps of vitamins and probiotics, which made me feel a little better!! Sometimes Drs want to just treat the cause (the Crohn's) and show little concern for the symptoms. Though it is logical from their standpoint, if you have a child who is struggling with anemia and fatigue from low vitamin levels you want to help them feel better ASAP!! So I would definately look for advice re vitamins and probiotics from these very knowledgeable people!!
Recently I was dropping alot of my son's vitamins and he was getting lax in taking his Aza (purely because he was sick of it and was feeling well) and we paid for it..He was just diagnosed with peri-anal abscesses and we have had to add long term Flagyl to the list!! Argh!! But...I am now happily giving him the tablets, knowing that they do the job for him even though I wish he wasn't on them (if that makes sense!!). I have to say I have re-introduced ALL of his vitamins (he doesn't take iron even though he is extremely anemic as it gives him terrible cramps) and within two weeks he just did his first normal bm in two years!!!!! (last night we celebrated that, sad huh??!!) For me the vitamins help assure me that he is getting what his bodies needs as best as possible. The probiotics help me feel better about his bowel being under so much pressure from the meds. The anti-inflamatories help me feel better about his bowel inflamation. Theliver cleansers help me feel better about the meds!! Are they just a placebo? I don't think so. They have definately helped us IMO. But even if it is just wishful thinking, I feel better knowing I am doing what I can to help my son.
Basically there are people here who have heaps of great experience. Please refer to their advice. I am only 2 years into this journey and have no experience with your son's drug. (I would definately look into the EN people have mentioned.) But I just wanted to let you know that you are sooo not alone. That you are doing great. That we do understand, and we are here for you.
Blessings to you and yours,
Ams xx
Hi, Whattodo,
I'm new to this forum, so still finding my way around, but noticed your post and wanted to comment. our DD is almost 7 and was diagnosed with Type 1 diabetes at 15 months. she was diagnosed with ulcerative Colitis around 3.5 years after contracting C.Diff in the community. She was pretty well controlled with sulfasaladine until this spring when she caught rotavirus which led to her being very inflammed over the summer. In august we started Remicadee which also has scary side effects. The prednisone was so hard on her BGs and just hard in general.
I'm sorry for your son's diagnosis, but I do agree with everyone else. I also have wondered if my daughter really needed her sulfasaladine when she was on it, but seeing what she was like this summer has convinced me that she truly needs it. I know it's really overwhelming to deal with 2 diagnosis...especially Type 1 & UC...they're both tough. I'm sure you're doing a great job, just let yourself grieve the diagnosis, but also do what you need to to keep your son healthy.
Take care~
Jessica
I'm new to this forum, so still finding my way around, but noticed your post and wanted to comment. our DD is almost 7 and was diagnosed with Type 1 diabetes at 15 months. she was diagnosed with ulcerative Colitis around 3.5 years after contracting C.Diff in the community. She was pretty well controlled with sulfasaladine until this spring when she caught rotavirus which led to her being very inflammed over the summer. In august we started Remicadee which also has scary side effects. The prednisone was so hard on her BGs and just hard in general.
I'm sorry for your son's diagnosis, but I do agree with everyone else. I also have wondered if my daughter really needed her sulfasaladine when she was on it, but seeing what she was like this summer has convinced me that she truly needs it. I know it's really overwhelming to deal with 2 diagnosis...especially Type 1 & UC...they're both tough. I'm sure you're doing a great job, just let yourself grieve the diagnosis, but also do what you need to to keep your son healthy.
Take care~
Jessica
DustyKat
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Hi Jessica and :welcome:
I am so very sorry to hear about your daughter and for you needing to find your way here but I am also glad you have, it is a wonderfully supportive and informative place and your input is greatly appreciated, thank you.
I hope your daughter is doing okay and Remicade is working well for her?
Dusty. xxx
I am so very sorry to hear about your daughter and for you needing to find your way here but I am also glad you have, it is a wonderfully supportive and informative place and your input is greatly appreciated, thank you.
I hope your daughter is doing okay and Remicade is working well for her?
Dusty. xxx
hi, DustyKat,
Yes, thankfully Remicadee is working wonderfully for her. I've heard a bit about taking Remicadee with another medication so one doesn't build antibiodies to the Remicadee? I have to look that one up. Her labs are much better, normal stools and her strength and vigor are back, so I'm thankful!
Yes, thankfully Remicadee is working wonderfully for her.
I've heard a bit about taking Remicadee with another medication so one doesn't build antibiodies to the Remicadee? I have to look that one up. Her labs are much better, normal stools and her strength and vigor are back, so I'm thankful!
DustyKat
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Is is wonderful to hear that your daughter is responding so well!
Yes, combination therapy. There are kiddoes here that are on Remicade alone or using combination therapy. There is an increased risk of a particular type of cancer when using the combined therapy and the drug that is involved is Imuran/6MP. The risk still remains very, very small though and tends to strike young adolescent/adult males. I think that is why some docs choose Methotrexate over Imuran/6MP for adolescent males. They are just my thoughts on that though!
The link that is my first post is a good read regarding medication.
Dusty. xxx
Yes, combination therapy. There are kiddoes here that are on Remicade alone or using combination therapy. There is an increased risk of a particular type of cancer when using the combined therapy and the drug that is involved is Imuran/6MP. The risk still remains very, very small though and tends to strike young adolescent/adult males. I think that is why some docs choose Methotrexate over Imuran/6MP for adolescent males. They are just my thoughts on that though!
The link that is my first post is a good read regarding medication.
Dusty. xxx
Thank you, everyone, for your advice and comforting words. It means so much to talk to others dealing with similar issues. Before my son was treated with Cimzia, he was treated with several medications including 60 mg a day of prednisone for almost two months (and later tapered down), flagyl, diflucan, levsin, asacol ... and others. At one point, he couldn't keep anything down (even water) and tests showed that he had no movement in his stomach. He was treated with reglan for a few days to kick start it (another drug with horrible side effects). Fortunately, after a week and a half, he was able to keep food down. BTW: After doing some research, we learned that the levsin he was taking slows the contractions in the stomach, and we think it is what stopped the movement in his stomach completely. The prednisone caused him to have some serious side effects as well. As for his hair loss, he was in great physical condition before being diagnosed with CD. His symptoms first began when he started experiencing stomach pains on and off while away at college; and within about a month, he started having severe diarrhea, and the pain became more severe. A few months before having stomach pains, he had mono. We think it's possible that when he got mono, it lowered his immune system leading to the GI problems. He spent several weeks in the hospital this past summer after he had a colonoscopy which revealed he appeared to have Crohn's disease and later was confirmed. He was admitted to the hospital on three separate occasions over a two-month period. While in the hospital, he was given a tpn through a picc line two of the times he was there. One of the times, the picc line caused him to get a blood clot in his chest which caused his arm to swell up. The blood clot was treated with lovenox and coumadin for 6 weeks. It was a very stressful time for him and for us as I'm sure everyone can relate. He lost 40 pounds and thought his life as he dreamed it would be, was no longer possible. I've wondered if stress caused his hair loss and have read that prednisone can; but in both cases, I would have expected it to grow back. I didn't notice the hair loss until he started taking the Cimzia. As for supplements, thank you for reminding me of the probiotics. I gave him probiotics when he was little which I, too, noticed helped him get better. He's been taking vitamins for the last couple of months that his doctor prescribed. Some one also mentioned to me that he should consider taking a pill that helps build a person's immune system. I'll be sure to bring that to his attention. As for celebrating his first bowel movement, we were so excited we did the same thing. Again, thank you for all of your advice and help.
DustyKat
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Oh my, what an awful time of things you have all had. :hug:
The Cimzia may well be the cause of his hair loss, it seems to be a side effect that many suffer with the varying drugs. I am not aware of too many on the forum as whole that are using Cimzia but numbers are building, there is a sub forum located here. Crohn's Mom has a daughter on Cimzia so I will tag her into this post.
My son is taking Imuran and many users find that it causes hair loss in its early stages. My son started taking it at diagnosis but soon developed complication after complication and his condition became very poor indeed. He looked skeletal and I didn't notice his hair, it was sort of an insidious thing, until I was giving him a hair cut prior to be admitted to hospital for surgery. It was at that point, this was about 6 months post diagnosis, I noticed just how thin it had become and that it had actually changed colour, it was lighter but I don't know if this was an illusion due to it being thinner.
When he had his surgery it immediately put him into remission and in the following months, as he regained his weight and condition, his hair darkened again and became thicker than ever. I often think to myself that in our case his hair was a reflection of how ill he was rather than anything to do with his meds.
Dusty. xxx
The Cimzia may well be the cause of his hair loss, it seems to be a side effect that many suffer with the varying drugs. I am not aware of too many on the forum as whole that are using Cimzia but numbers are building, there is a sub forum located here. Crohn's Mom has a daughter on Cimzia so I will tag her into this post.
My son is taking Imuran and many users find that it causes hair loss in its early stages. My son started taking it at diagnosis but soon developed complication after complication and his condition became very poor indeed. He looked skeletal and I didn't notice his hair, it was sort of an insidious thing, until I was giving him a hair cut prior to be admitted to hospital for surgery. It was at that point, this was about 6 months post diagnosis, I noticed just how thin it had become and that it had actually changed colour, it was lighter but I don't know if this was an illusion due to it being thinner.
When he had his surgery it immediately put him into remission and in the following months, as he regained his weight and condition, his hair darkened again and became thicker than ever. I often think to myself that in our case his hair was a reflection of how ill he was rather than anything to do with his meds.
Dusty. xxx
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Sorry to hear about your son. Sounds as if he's dealt with alot (and of course you having to watch him suffering). I always think it must be harder as they get older and spend more time away from home - hard to keep us obsessive moms in the loop!! :lol: I am hoping Andrew always wants me to come to his GI appointments - poor boy!
I worry about side effects too. Apart from a peri-anal abscess/fistula my son has very little wrong with him (maybe some tiredness) so I find it hard to justify the side effects of the medications. I have a sneaking suspicion that things are starting to go wrong so may end up having to give him something soon. The docs want him on the 6mp (sorry no experience with Cimzia) and my main worry is the cancer risk - being an "adolescent male" which is high risk, plus he is red headed which does increase the chance of skin cancers.
Good luck with it all!!
I worry about side effects too. Apart from a peri-anal abscess/fistula my son has very little wrong with him (maybe some tiredness) so I find it hard to justify the side effects of the medications. I have a sneaking suspicion that things are starting to go wrong so may end up having to give him something soon. The docs want him on the 6mp (sorry no experience with Cimzia) and my main worry is the cancer risk - being an "adolescent male" which is high risk, plus he is red headed which does increase the chance of skin cancers.
Good luck with it all!!
Crohn's Mom
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Hi Whattodo and welcome
My goodness your son's story sounds so familiar to my daughters. She was also suspected of having Crohn's at 9/10 years old, got better, and then went undiagnosed/untreated until she was 16 and CD reared its ugly head. She also we hospitalized for Mono about a year before her diagnosis, and she continued to show "active mono" for nearly a year. She had two surgeries last year, with the first one being the worst and she had approx. 5 ft. of bowel removed and a temporary ileostomy placed. The second was her take down surgery 9 months after.
She has been on and off Cimzia for 16 months ~ she had to stop and restart due to the second surgery ~. Hair loss was one of the very first side effects that we noticed with Cimzia. We are still not positive that it was the Cimzia that did it, because she also had the same thing happen about 2 years prior to starting it when she began to get very ill. However, whether it was the stress from the illness, or the medications, (6mp, apriso, prednisone, flagyl, cipro, etc..all failed her as well), her hair is now growing back in beautifully.
She has recently had to do a 3 month taper of Entocort along with the Cimzia to try and get her back into remission. She was feeling better while on it, but now that she has tapered off she's back to not feeling so great again. We are now getting ready to try doing the injections every two weeks, (1 shot, every two weeks); if this doesn't help than they will either add the methotrexate or double the dose of the Cimzia injections.
It's always going to be a risk with the medications for them I'm afraid, however, it's like I remind my dear sweet daughter, we have to try and remember that the benefits are outweighing the risks; with out them, they would not have a life to live productively.
I wish you and your son the best, and I'm so sorry you're going through all of this ~ and with diabetes on top of it.
Hang in there and big hugs !
xoxox
~T~
My goodness your son's story sounds so familiar to my daughters. She was also suspected of having Crohn's at 9/10 years old, got better, and then went undiagnosed/untreated until she was 16 and CD reared its ugly head. She also we hospitalized for Mono about a year before her diagnosis, and she continued to show "active mono" for nearly a year. She had two surgeries last year, with the first one being the worst and she had approx. 5 ft. of bowel removed and a temporary ileostomy placed. The second was her take down surgery 9 months after.
She has been on and off Cimzia for 16 months ~ she had to stop and restart due to the second surgery ~. Hair loss was one of the very first side effects that we noticed with Cimzia. We are still not positive that it was the Cimzia that did it, because she also had the same thing happen about 2 years prior to starting it when she began to get very ill. However, whether it was the stress from the illness, or the medications, (6mp, apriso, prednisone, flagyl, cipro, etc..all failed her as well), her hair is now growing back in beautifully.
She has recently had to do a 3 month taper of Entocort along with the Cimzia to try and get her back into remission. She was feeling better while on it, but now that she has tapered off she's back to not feeling so great again. We are now getting ready to try doing the injections every two weeks, (1 shot, every two weeks); if this doesn't help than they will either add the methotrexate or double the dose of the Cimzia injections.
It's always going to be a risk with the medications for them I'm afraid, however, it's like I remind my dear sweet daughter, we have to try and remember that the benefits are outweighing the risks; with out them, they would not have a life to live productively.
I wish you and your son the best, and I'm so sorry you're going through all of this ~ and with diabetes on top of it.
Hang in there and big hugs !
xoxox
~T~
Thank you, Dusty, Sascot and Crohn's mom. It was good to hear from all of you. I've also noticed, Dusty, that my son's hair looks lighter and have thought as well that it's just an illusion because it's thinner. After hearing from you, I wonder if he, too, has been losing his hair because of the trauma his body experienced over the last few months and the cause isn't necessarily the Cimzia which I have feared is harming him. Thank you, and thank you for putting me in touch with Crohn's mom. Wow, our stories really are so similar, T. Thank you for your advise. I will remind my son, too, that the benefits outweigh the risks. I'm sorry your daughter hasn't been feeling well as of late. I hope she will begin to feel better very, very soon. Big hugs to you as well. Hi, Sascot. I also worry about the risk of lymphoma. Our doctors have told us that Cimzia, like Imuran, also has that risk and adding Methotrexate, which they have advised, increases that risk. They have stressed the risk is very low, but any risk is scary to us all. I guess all we can do is try to not worry. One of my son's GIs told us he would not use Remicade with Imuran in young, male adolescents; but one or the other by itself was okay. So it's good that in both our cases, our sons are not being treated with that combination. I was under the impression that the combination of any biologic and an autoimmune suppresant was a concern, but Dusty mentioned that the combination of Cimzia and Imuran is what doctor's avoid treating young, male adolescents with. Doctors choose to treat them with Methotrexate, specifically, instead of Imuran. Dusty - Can you tell me more about why Methotrexate is okay with a biologic and not Imuran with a biologic? T - Could you tell me more about Entocort and why that might be a better option than Methotrexate with Cimzia? Well, it's bedtime on my side of the world. Good night, everyone, and take care.
I came across this thread searching for side effects of Cimzia. I have Crohn's. I was on Humira for 2 and a half years it worked great for me, only side effect I had was hair loss and some severe upper respiratory infections that happened yearly, Jan-March. I stopped taking it this year because I was doing so well, but my very aggressive Crohn's has already started to flare again and we are going to try Cimzia to see if it is any better for me before I go back to Humira.
I am 32 now and do not have children but my father has Crohn's and I was a child diagnosed with Crohn's at age 15. I did not have the benefit of biologics and did not respond to the drugs on the market at the time either. My parents were forced to find alternative ways to help me out of my first major flare and to this day I still use them. Figured they might help all of you too.
- Aloe Vera Gel to be taken with any oral tablets or capsules. It helps promote absorption thereby helping more of the medicine get into the blood stream through the stomach and intestines.
- Probiotics. A product called Primal Defense offers the most important 14 probiotics in one tablet/capsule or powder. It was created by someone with Crohn's disease.
- For those that suffer from C. Diff. if you take a probiotic called Saccromyces Boularrdii when on an antibiotic you should be able to get through your prescription without going through a bout of C. Diff. (I also suffer from C. Diff) I do this and it hasn't failed me yet.
- Vitamin D3. You just can not take enough of Vit D3. Crohn's disease LOVES it! If your doctor is not testing your Vitamind D3 levels they should be. I take 5000 IU's daily and when I get very sick I take 10,000 IU's daily. You can make D3 from being in the sun, but those of us that are sick don't want to spend all that time in the sun and a lot of our other medicines don't want us out in the sun. The blood test is 25-hydroxy. And you don't need a prescription for it, just buy it over the counter.
- Last but most definitely not least. Vitamin C in HIGH doses. Your body can't store it. A body that is not sick can use 1 gram an hour. You can't over dose on it. I take 3-4 grams a day. One gram at a time spaced out throughout the day. When I'm going through a major flare I take one a hour as many as I can get down.
I hope my experiences and trials and tribulations help you and yours. I have had two major resections and have one active rectal-vaginal fistula. Good Luck to all of you!
I am 32 now and do not have children but my father has Crohn's and I was a child diagnosed with Crohn's at age 15. I did not have the benefit of biologics and did not respond to the drugs on the market at the time either. My parents were forced to find alternative ways to help me out of my first major flare and to this day I still use them. Figured they might help all of you too.
- Aloe Vera Gel to be taken with any oral tablets or capsules. It helps promote absorption thereby helping more of the medicine get into the blood stream through the stomach and intestines.
- Probiotics. A product called Primal Defense offers the most important 14 probiotics in one tablet/capsule or powder. It was created by someone with Crohn's disease.
- For those that suffer from C. Diff. if you take a probiotic called Saccromyces Boularrdii when on an antibiotic you should be able to get through your prescription without going through a bout of C. Diff. (I also suffer from C. Diff) I do this and it hasn't failed me yet.
- Vitamin D3. You just can not take enough of Vit D3. Crohn's disease LOVES it! If your doctor is not testing your Vitamind D3 levels they should be. I take 5000 IU's daily and when I get very sick I take 10,000 IU's daily. You can make D3 from being in the sun, but those of us that are sick don't want to spend all that time in the sun and a lot of our other medicines don't want us out in the sun. The blood test is 25-hydroxy. And you don't need a prescription for it, just buy it over the counter.
- Last but most definitely not least. Vitamin C in HIGH doses. Your body can't store it. A body that is not sick can use 1 gram an hour. You can't over dose on it. I take 3-4 grams a day. One gram at a time spaced out throughout the day. When I'm going through a major flare I take one a hour as many as I can get down.
I hope my experiences and trials and tribulations help you and yours. I have had two major resections and have one active rectal-vaginal fistula. Good Luck to all of you!
