I have been lurking around for about a year. I have come out to ask everyones advise.I have sero-neg for 15 yrs. went thru all the nsaids,dmards,now on biologics.I had a infusion reaction to both remicade an orencia.blood pressure shot up,difficulty breathing,throwing up,ect. very very scarey stuff.I was in a infushion center when it happened so nurses an docs were right there.My rd wants me to try humira but i am scared.at least with the others I was in a controlled environment.with humira Im home.I live 2 mins away from the hosp.but it came on so quick last time.Rd said i could come there but its 40 miles each way.Family doctor said he wont let me go there because he did not precribe the humira an knows nothing about it.A reaction can happen your first time or your 20th. any advise would be helpful. I am on 15mg pred. It is causing my blood pressure to go sky high.I want to get over this fear !!!! help!!!
Welcome jennyb and so sorry to hear about the med reaction. That must have been scary and I understand your caution with the Humira. Maybe give the yourself the first injection when someone is with you that can get you to the hospital immediately. I will take my first biologic injection as soon as it comes in and will also take my own advice and make sure someone is with me. I do thank you for the post as it never occured to me that I should not inject myself the first time alone.
Sending hugs and prayers.
thanks Bonny for answering my post.I thought i would get more sugestions or support from everyone.I seem to be fighting a losing battle anyways.thanks again.You'll get more responses Sweetie; just wait.
Welcome....or welcome out of lerking Mode anyway
Gracious. I can certainly understand your fears. That's really scary. Do they have any idea what's causing the reaction?
I've only been on one biologic and that was Humira for two years. I can't say with total certainty; nor can anyone else that everything will be fine. Bonny's advise is definately excellent advise. My husband has always given me my injections and constantly worried over me afterwards although I never had any problems. I would feel him checking on me during the middle of the night to make sure I was ok. (Very touching by the way)
I've now been taking off of Humira for other reasons and I'm about to go through your same fears of trying something new. I'm hesitant; but at the same time I'm only 36 years old. Granted that's not as young as I use to be (Dx'ed 13 years ago) but it's still young enough to have many, many years ahead of me. I know all too well the destruction this disease can cause when not treated.....or even under treated for that matter. I know without a doubt that I have to do whatever I can to minimize the distruction as early as possible. Later may be too late.
I know it's scary; but for me there's not many choices. Wait out of fear and later regret the damage RA will do to my body.....or keep trying with total faith that everything will be alright.
You know the signs that something is wrong. It won't take you but a short time to recognize the symptoms and get to the hospital that is 4 minutes away. If you aren't married, have a family member or girlfriend come when you get the injection.....and even sleep over. That way help will be there if you need it. I feel like if the doctors felt like it was too big of a risk they wouldn't prescribe it to begin with.
I can understand your fears. I've got them myself.....I don't mean to belittle your fears; their very, very real; and justified as well. I hope you'll give it some serious thought. I'm not sure how badly this disease has effected you over the years; but I imagine after 15 years you know what happens without proper medication. I'm sure you've been there at different points along the way.
Best of luck to you as you struggle with your choice. I wish I had some magic answers for you.....but I don't. All any of us here can offer is friendship and encouragement. I hope we see more of you. We'd like the chance to get to know you. No doubt you've had tons of experience and would have much to contribute to this forum.
Stick around. We need you.
Hi Jenny!
I was on Humira and they sent a nurse out from the company who went through the whole process and stayed. SHe really made me comfortable. Also there is DVD to watch, a step by step guide book, and an 800 number you can call day or night for questions or concerns. Don't worry, I have been allergic to several of the RA drugs and didn't have any problems with Humira. I actually felt so much better with my first shot. SO< Give it a shot....(tee hee).
Best Wishes!
CinDee
Hi Jenny,
lovie, thanks for advise. Im about at the end of my rope so to say. I have two meds left to try. rutuxin an humira. I was on remicade for 3yrs an then had a infusion reaction.next was orencia,reaction right away.Rd joked that know one has a reaction to orencia.lucky me! also became allergic to anything with codeine in it about the same time.so there goes most pain meds.I know i should just get over being a chicken but I really thought i was going to die.the loss of being in control of your life force is scary.My husband said he would be here for me.It still dont make it easier.My sister says she thinks all the meds are making my body rebel.who knows? we are all being guinea pigs for these new meds. but what choice do we have?
cinn-dee how did you get a nurse?You're aren't being a chicken at all! You certainly have good reason to be afraid.
Rituxan and Orencia are what my Rd wants me to consider now. I'm leaning toward Rituxan because it's only a twice a year infusion. I like the sounds of that; but I'm not sure I'd go that route if I were you. I've spoken to one friend who's on it and they give you a huge dose of steroids before the actual medication. My friend had a horrible reaction to that and ended up in the hospital; not the rituxan...but from the steriods. She now takes it without the steroids first which might be best for you too considering your history. I still think if it was me I'd go with the Humira.
Being on a medication 3 years and then having such a horrible reaction should scare the crap out of all of us! But at the same time....we've got to keep trying I suppose.
Any reason why you can't take MTX? Or do you?
Jenny, I would also be afraid. That's a severe reaction. My first thought was to have Benadryl close at hand. But the epi-pen sounds much better and a nurse sounds even better.
I would really, really talk to your doctor about the safety issue. You need a game plan for this in case you have an initial reaction or one down the road. It seems that some people do have lots of allergic reactions and I think your fears are well-founded.
Don't take it until you are sure you have your emergency plan in place. That will help take the fear out of it. Seems to me that doing it the first time in the office would be worth the drive. But surely they could send you a home nurse. Your doctor just needs to request it for you--at least, I think that's how it's done. Of course, then your insurance has to approve it. But I'd rather wait to take and be sure I was safe.
No, I don't think you are over reacting. I think you are being very smart.
I have been on mtx for a long time . RD just raised it to 17.5mg.also on pred.15mg,folic acid 1mg. also on blood pressure meds because of the pred.after the reaction to remicade Rd wanted to try again but premed first.Benydrel an pred. 125mg per iv. had another reaction but not as bad as first. then it was decided to go to orencia. was premed but had another reaction.If it wasent for being on pred. i could not function. I am on short term (12 wks) med leave.I am going to call humira an see if they have any answers.I know how great it can feel to have a med work (remicade) an want that back. I just have to be secure on feeling safe,an right now i just dont feel i am.Welcome jennyb!
My only experience with a biologic is with Humira and it's been o.k. except for a little site reaction. I could have had a nurse come out for the first injection but my husband and I thought we'd try it ourselves. The Humira customer service person or whatever they are, called me several times over a 4-5 week period to find out how I was and if I had any questions. She was really nice and when she asked how I was doing she let me go on and on about what I was going through with RA , and she just listened. The last time she called I felt kind of embarrassed about how long I talked to her, but she was so sweet about it.
I hope Humira works for you jenny. Keep your chin up
My RD had me take my 1st inj of Enbrel in his office and sit in his waiting room for 2 hours where his nurse checked on me every 15 - 30 minutes .
Could you do that?
Hi Jenny,
I have a friend who has just started Humira, she had her first few injections at the clinic where her partner was also "trained" to do them as she's a bit squeamish. I'm not sure if this is normal practice in the UK or just because she made a fuss about doing the injections but maybe you could do the same for the first couple?
Also I am on infliximab (remicade) and here we take MTX as well to lessen the likelihood of an allergic reaction to the infusion, if you don't take the MTX you get given IV steroids before the infusion. Did you have this? The Rheumatologist explained to me that the MTX stops your body from "fighting" the infliximab and therefore allows it to do it's job without being hindered. That's the simplified version anyway LOL.
Good luck with whatever you try.
KT
Hi Jenny, Humira sent a nurse out. I also filled out forms at my dr's office saying I needed a nurse to help me with my first injection. Try calling your rheumy ask them about a nurse. She was so nice and spent a lot of time comforting me. She was great!
Good luck
CinDee
Hi Jenny,
I just wanted to say welcome. I, too, lurked for a long time before finally "coming out". I'm new to all this and have not yet tried biologics so I don't have any advise except to say that the previous posts all sound helpful.
Good luck!
I think you need to find a new primary care who will help you with this and be willing to see you the second you have any type of reaction. thanks everyone for your support. I called Humira Feb 4th and they agreed to fax my Rd papers for a nurse to be with me the first couple times.Now its just a waiting game for everything to fall into place. I am still scared but at least I will have someone with medical experence at my side.I was so down when I first posted this thread.I felt so trapped by my own fear.Thanks every one for showing me some daylight. PS SussyG, I am looking for a new GP. Small town,know one accepting new patients.will keep trying.