I have crohns, so I have been doing Remicade infusions since 02, every 4 wks. My gi has decided that I have built up antibodies to it from having so much of it. Sometimes I would get relief and sometimes I didn't. My last infusion was last month, so we will see how it goes. I am also on 100mg of Imuran. I am wondering if Humira is a possibility for me. One of the girls from the cd board could not handle Remicade, her gi managed to get her ins. to approve it even though its not approved for cd.
I understand your fears but have seen some excellent results as a result of the Humira. I do hope all goes well for you. Susie
I've been on Remicade for a while now and my doctor told me today I need to switch to Enbrel. I'm worried myself for various reasons. I can tell you with the Remicade, I had wonderful results even though getting the IV is a painful experience for me (small veins). I know some people on Enbrel and Humeria who had the same great results. It's all scary though.
However, if these drugs are stopping the process of arthritis (which ever form), do they risks outweigh the benefits? I'm asking that myself. It's a tough call. But, I owe it my family to try and have some sense of a mother/wife around. If it doesn't work, then at least I tried - (I'm scared to death of giving myself injections, by the way) - and hopefully nothing but a little time has been lost in the process of figuring out what med to take. Of course, for me, the test will be when I actually have to do the injections. I may chicken out myself as getting the IV proved to be very difficult for me, but I had no choice but to go through with them!
My suggestion to you is: Go get the TB test. It doesn't mean you HAVE to start the Humira right away, but at least you will be able to take it when YOU feel ready to give it a shot. (HA, no pun intended!) I prolonged my TB shot for the Remicade 2 summers ago, but ended up needing to get it for my daughter's preschool anyway and had no choice!
I'm realizing a lot of the doctor dx seems to be guessing. It stinks...you just have to hope they make the right guess and what they can give you works. As my PCP told me, "you won't know until you've tried..." I know the MS is a scary thought...but, start the drug, see how it helps, get the follow up test in August for the MS and go from there. If the meds help and you want to continue - then insist you get regular testing/follow ups on the MS to make sure it's not developing or getting worse so you are on top of it.
Post Edited (effie) : 7/9/2005 7:47:32 AM (GMT-6)
Good job in taking the first step to tackling those fears! I'm going to need that same help if and when I start Enbrel (or Humira, if you look at my response to Straydog.) My fear of needles has not waived though I've been dealing with them so often for so long! The thought of giving myself a shot gives me a stomach ache!
Regardless, now that my pain and stiffness is coming back to my entire body....I miss the Remicade and may have to get that last infusion before the doc decides which route to take. I was so happy to be feeling better after that last infection and I was hoping to actually DO something with my kids this summer....now, I can barely walk through the grocery store w/o out severe pain. If this keeps up, I 'm going to have to borrow one of my father-in-law's canes. My feet hurt too bad! I almost fell down the stairs becaues my knee suddenly gave out the other day.
That actually was not supposed to be a pitty paragraph - it was supposed to make a point! The point is - I haven't had this kind of pain in general since before I started Remicade. (with the exception of the infusion my body rejected in March) and if this keeps up, I'll be more than HAPPY to give myself a shot if it means getting rid of this pain. That is how GOOD I felt on Remicade and I know there are others with just as good of results on the other 2 drugs. So, I will reiterate what I said before, give it a try...don't let your fears overtake your chance to feel like a new person! Take charge of your care if you have concerns like the MS, but you owe it to yourself to get some relief it is available to you.
On a side note, I was looking up the TNF blockers on their respective sites and the one thing Humira claimed that the other two did not is it helps with the fatiuge arthritis causes - BOY could I use that! I know feeling better in general helps with that fatigue, but if it's better fighting that than the other 2, sign me up!
SO, it is Tuesday - have you gotten the TB shot yet????
Post Edited (effie) : 7/17/2005 3:35:09 AM (GMT-6)
Erin, I'm so sorry for your lack of sleep. I hope you finally got some! I can't believe 3 morphine didn't help! I hope your doctors can get you in to Mayo. I hear good things about them. I think the one in Minnesota (I think that's where) is their hub and is supposed to be excellent. There is one in Scottsdale, Az and I think one in your area....not sure on that. I don't know if each one has a different specialty or not.
Glad I could keep you company last night! I got a really NICE surprise from my kids this a.m. - they slept in a little bit! And I got an extra hour more than usual in regards to wake up time. Boy did I need it!
Effie, I'm so sorry to hear about you being sick. You must feel absolutely miserable! Feel better soon!
As for my daughter, she is typically a very kind, caring, sweet little girl. She is extremely articulate. At 8 months, she had a large handful of words she could say, though they still sounded like baby-talk, they were prounounced enough for me and my husband to know what she was saying. She was always a cuddler (unlike my son who NEVER was even as an infant) but always high-strung.
I worry that possibly the problems are something I am not handling properly. Am I not giving her the mental or emotional challenges she needs to keep her from these spells? However, these spells often are at their worst when changes happen in our daily life. The one in January occured after the holidays (which her bday in also in DEC.), her 5 yr. shots, a week long trip with family, and returning to school after the winter break and trip. This last one occured on her last week of school (she is nervous and sad to leave her teacher and start Kindergarten at a new school), her dad when on his annual trip w/o out, I was getting over pneumonia all at the same time, she also had a milestone of finally being able to master caring for herself in the potty room.
I've noticed TV in the wrong dose helps her act up. If she's already in a spell - 20 minutes can be too much, though sometimes, it helps calm her down - until you turn it off! Certain foods I think trigger her. I'm thinking it's the processed breads - when I give her a kid snax (like Cheese-its) she'll act up soon afterwards. I don't think she's so bad she has celiac's disease, but I guess you never know. I know that disease can cause a lot of strange problems in children. But, I often notice BETTER behavior out of her when I feed her more gluten-free foods, keep even the cooking to using soy rather than dairy, and pushing more raw foods on her (she loves to eat and thankfully, for me, she eats just about anything.)
If she were diagnosed with ADD, she is not hyperactive to make it Adhd......my son, on the other hand is very active, easily distracted (the typical 4 year old - spends 2 minutes on one activity, then is ready for a new one.) However, her instensity and need for routine seems much more manic and persistant than most moms I talk to. Any disruption can cause a melt down. Once she's hit a point, she seems to be unable to control herself, calm down, or even listen. She gets very hysterical - it's like watching a movie of an out of control child. This last time, her NEED to be with us was overpowering her ability to stay put (in her bed, in the corner, etc.) to the point, she'd rather had us spanking her (a very last resort for us) than to have us leave her. We've taken every approach with her and it is tiresome....right now she's back to her angel self, but it was a very trying 3-4 weeks to get here.......and I'm expecting another one at the end of August (I am hoping not of course!) after our 2 week trip and starting Kindergarten at her new school AND now going to school 5 days a week for 3 1/2 hours (versus last year's 3 days 3 hour days.) but, it seems last year, she had a spell around the same time.
Any thoughts, ideas, tactics you know of, find out, etc. would be most helpful to help fend off this in the future.....Distracting her is a good suggestion, but difficult because a lot of the problems start from her doing something naughty and us taking action on it. The few times it comes from us just trying to calm her down before she gets too upset over somthing often blows up in our face because the mere fact she got that way is too much for her to handle.
Well, that is enough of that....I'm sorry to go on about her, but if any of that information is helpful, I guess it's worth the read! I love her to death and is hard for me during those spells because I saw what a bad road my sister started on not being "treated" properly as a child and I don't want that for her.
Thanks for your interest.
My prayers are with you that it is NOT any form of cancer....I hope this is just a glitch in the life of RA and you will be back on the road to health very VERY soon. Remicade was awesome for me - I hope you find the same great results.