After my doc received my blood work showing that I did not have an infection and that my symptoms were primarily due to allergies, she has decided to have me come in and discuss other treatment options. I have weird allergies so I'm a little nervous. I had such a bad reaction to Prednisone that my BP got to 200/100 and my resting pulse was 150 bpm and I had to go on Cardizem to get my blood pressure and heart rate back to normal. So needless to say I'm a little nervous about a switch.View Thread
Just curious if anyone else has had a localized allergic reaction to Humira at the injection site. I switched from Remicade to Humira a little over a year ago. Then I found out I was pregnant so I stopped my meds (and I did amazing during the pregnancy). Once the baby was born my symptoms returned so the doc had me to start the Humira back. Before I would have a small red, raised, itchy circle at the injection site. But now, after the baby, I have large, very hot, very itchy, painful and red circles at the injection site. They started out about the diameter of a golf ball, then a baseball, and then this one this week grew to six inches in diameter and it is painful. My doc has advised me to take Benadryl and it doesn't seem to work. She said it is so uncommon for this to happen that she called it in to Humira. Each reaction is getting bigger and bigger, but my doc doesn't seem to want to pull me off of Humira. I am afraid of a full blown allergic reaction. This week with the huge local reaction I have experienced runny nose, watery eyes and sneezing as well. I guess that could be the weather too but it's just odd. Although the meds work so well for Crohns that I am having hardly any symptoms at all relating to Crohns. I feel I'm getting brushed off by my doc. She hasn't even had me in the office over this. All communication has been over the phone. My primary care doc is very concerned. I hate to go through switching docs, but I'm seriously considering it.
Any other common experiences? Any other meds I should ask her about to switch to? What about Cimzia?View Thread
I once had to take Prednisone for a Crohn's flare up and it was horrible. I gained 20 lbs. in one month, my blood pressure creeped up and my pulse rate creeped up. After 8 weeks I wound up in the ER on a Cardizem drip with BP 200/100 and resting pulse 150 bpm. I don't mean to scare you because I was a rare case that had an allergic reaction to the steroid. After 4 months of the Cardizem everything went back to normal. Just letting you know things to watch for though. About the weight, I did nothing and it went back to normal. After about two months I had lost all of the weight that I'd gained with the Prednisone. I'm like the PP, I think most of it was swelling and puffiness. Good luck and maybe you can just give the weight time to shed since your appetite has gone back to normal!!View Thread
I have not experienced this but I do know that my doc ask me if I have had any joint pain everytime I have a flare up. I also know that Rheumatoid Arthritis and Crohn's are closely related auto-immune diseases. I actually inherited the Crohn's from one side of my family that primarily suffers from Rheumatoid Arthritis.View Thread
I know it can be scary when you look at what all of the possible side effects of Remicade are. I was on Remicade for two years and I experienced hardly any side effects. A lot of people on here have said they experienced fatigue after the infusion, but I was lucky enough that I didn't experience that. The one thing I did have though was hair loss. But, my doc chose to keep me on it and increase my vitamins and it stopped the hair loss. It worked so well for me that I hated to stop it as well.
I also know a young man who has been on Remicade for several years. He started it around the same age as your son. His mom gives many compliments on the drug. I spoke with her before I started it and she really recommended it. This is just my experience hopefully others will have more input for you.
The only reason I stopped was because I asked to be switched to Humira which I inject at home. It is a lot like Remicade it just has a different protein. I switched for convenience because I was traveling two hours for a three hour infusion. If it had been more convenient I would still be on it. Good luck and best wishes!View Thread
I once had a problem with really sore gums and several mouth sores at once. I was miserable. They were so painful. Of course it stemmed from the Crohn's so the doctor prescribed what was called ,"Magic Mouthwash". It is something that the pharmacy mixes and it has a numbing medicine in it too. I had to swish the mouthwash twice a day for around a week and it was amazing how well it worked. Not only did it work well but it helped keep some of the pain away until it healed completely. Maybe your pharmacy has something similar. Maybe it will help with just the gums too.View Thread
I took Remicade for over a year and unfortunately I did experience hair loss. It came out in clumps. I actually put the hair from one day in a ziploc bag and took it to my doctor. But, it kept me in remission so well that my doc thought maybe I should just increase my vitamins. After a year of the remicade I didn't lose all of my hair it just thinned a lot, but I was willing to cope with it because the Remicade was working so well. I did however after a year switch to Humira injections for convenience and cost. I was driving two hours to spend three hours in an infusion clinic for the infusion. Humira I inject at home and it has worked as well as the Remicade. I didn't choose to stop the Remicade because of the hair loss, and I believe the Humira took so well because the Remicade did such a good job of getting me in remission (just my opinion). I still have thin hair but hey, I'm in remission!!View Thread
I took Remicade for over a year and it was wonderful. I spoke with someone else who has been taking it for over 5 years and it has worked great for them too. It's scary to see TB and Cancer as side effects, but the cancer was very rare and mainly seen in teenage boys (from what I read). But, the person I spoke with started the meds when he was in his early teens and he has done great. I tried all other meds and Biologics are the only thing that works for me. As for the cancer scare, I based my decision on the assumption that the risk of untreated Crohn's had a higher risk of developing into cancer than the biologics. But that was just a decision I made for myself and everyone has different opinions. I do suggest you do lots of research before just to familiarize yourself with the drug. Good luck and best wishes.View Thread
Absolutely do not give up on having children!! I have Crohn's and I was also on everything coming and going. Remicade put me in remission, but my doc agreed to let me try Humira, because of the similarities of the drugs, for convenience. I live in a very rural area and had to travel two hours for a four hour infusion where as Humira I administered myself at home. It was wonderful and kept me in remission. I have an amazing four year old and I am currently pregnant with my second child. My first pregnancy was fine with the aspect of Crohn's, but I did develop Pre-eclampsia. This pregnancy has been perfect so far and I am 25 weeks along. You can actually continue to take the Humira while pregnant, except for the last trimester. I chose to try the pregnancy without it from the beginning and I have done great. While pregnant your immunities lower so as not to fight off the baby and that helps keep the Crohn's in remission. You can't breastfeed while on Humira either. After the birth of the baby your Crohn's is pretty much guaranteed to flare up, so I have planned to go back on the meds immediately. I know after the birth of my first child I had a flare up within one week of his birth but I was able to get it back under control quickly.
Lots of decisions but no reason not to consider having children if your Crohn's is currently in remission!! Good luck!!View Thread
Congrats!! I am also pregnant. I am 21 weeks. Before conceiveing I was on Humira Injections to control my Crohn's. After finding out I was pregnant I took one more injection and decided to quit all of my Crohn's meds (I know most people don't do this and I don't recommend it before talking to your doctor). I was very nervous although it was my second pregnancy but I was told pregnancy could put your Crohn's in remmission. And for me it has. I have not had a single problem with my Crohn's this far. It's like it doesn't even exist. When you are pregnant your immune system lowers so as not to fight the baby. This is not the case for everyone but I hope it is for you. Although I did have a problem with weight gain in the beginning, so my OB had be to drink Ensure three times a day. I don't even have to drink those anymore. I know with the experience with my first pregnancy though, as soon as the baby was born the Crohn's came back full force. Good luck and best wishes!!View Thread