Oh bless you x Not had any of the biologics yet (UK NHS system!) so have no insight to offer you.........but hang in there Mimi, I get you with the migraine that outstrips all others........I stopped taking beta blockers years ago because of a humdinger of a migraine (incidentally that's what the beta blockers were to treat!)
Hope you start to recover soon x big hug x
I had a hard time from the start, I needed extra time (ended up taking 7 hrs each time), I got the chills and headaches during the infusion. At the 3rd infusion I went into anaphylactic shock within seconds of the infusion running in. Luckily they stopped the infusion and I was ok in about 15 minutes. I think you dodged a bullet. Your next infusion may have had a more serious reaction like mine.
mimiB said:
Thank you, Marietta. I am sorry you had trouble. Can you tell me about your experiences?
Since I was passing out I don't remember much beyond choking out "somethings wrong, can't breath" and the nurse stopping the infusion and injecting a whole bunch of stuff into my IV line, Dr. rushed in and they kept talking to me, laid me down, but I don't really remember any further details. I was fine in 15 minutes or so, except they said I could never take Remicade again and I had to continue on the quest for another medication.
I don't want to scare anyone by this (hence leaving out details earlier), but I do want people to know that sometimes earlier reactions like headache, chills, etc can be indicators of further, more serious reactions in the future.
The 2nd infusion they upped my steroids and antihistamines, slowed down the infusion even further, and I still had headache and chills. That led to the anyphylaxis on the 3rd infusion, even with extra care taken.
mimiB said:
What did they do for you to stave off the anaphylaxis ? That is so horrible, I am so sorry you experienced that !
Right now I'm on 50mg Enbrel every 4 days. I've done all the biologics, other meds, and tried Xeljanz the new JAK inhibitor. Unfortunately there's no answer, really. What works one year may not work the next. I focus on a few months at a time.
mimiB said:
Wow, yeah. I have not scheduled my next one. I wonder what they will say when they finally get around to calling me to get it scheduled IF they are going to want me to even try it again. Right now I can't even think about doing it. It is going to have to take some fast talking on their part to convince me this time. What are you taking now, Marietta ?
You haven't had this long enough, to give up on meds..Not poison..poison is being stuck in a wheelchair, not living!
Change rheummies, or have a serious chat...SOOOOOO many meds, other biologics out there...Before Enbrel they gave me in 2000. I did triple DMARDS, NSAIDS< and prednisone....anything to be able to do personal grooming, drive my kids to school at the time, etc
hang in there!
I am so sorry you are having such a hard time Mimi, I am sending you warm hugs and prayers. I too think the Remicade might be working. I know my Rheumy is amping the dose up really slowly, I think to decrease the chances of my reacting. I had a great day yesterday but have had problems with fatigue and pain for about a month. Some days it's just one foot in front of the other...I will keep you in my thoughts.
It really is. I am laying low today but had a really great day yesterday with friends. One foot in front of the other is my goal for today!
Glad you're feeling better Mimib !
I admire your attitude Mimi. Sometimes it is really hard to remember no action may be the best action over all. You are in my prayers. M
I'm glad you're beginning to feel better Mimi, feeling peaceful about a situation its a great step forward in being kind to yourself, in taking control. Hope you get a good treatment plan on the 22nd and enjoy your family reunion :)
Enbrel is approved for Psoriasis, I can't imagine why he wouldn't want you to try it. That's weird.
Huh. Enbrel worked for me but Remicade did zero for me ('course, I only had 2 infusions before the disastrous third). I've never heard that Remicade is more powerful than Enbrel, just that they are different. Usually the inject at home meds are given first, unless there is some overriding reason Remicade is the only thing that would work.
Do you like your rheumatologist? He seems a little uninformed about biologics.
mimiB said:
He did say that if remicade didn't help much, Enbrel was unlikey to help. He said Remicaide is a "bigger gun" than Enbrel. I don't know if that is so,
I ma sorry Mimi, that is what I do. I was always so proud of my good immune system, not so much now! Remicade, even at a higher dose did little for me on the last infusion. As I seem to have done this with all the previous biologics I am not sure what to do now. I will discuss it with my Rheumy at next appointment.
I haven't given up yet. I had my last infusion (4th) 3/7/13. Still waiting for it to kick in! Went up from 300 to 400 mg. Next appointment is 5/1/13. So far I am not impressed but I have not reacted poorly in any way. I got 3 weeks of being absolutely symptom free after the third dose but it faded away. I am laying low as Vermont is cold and grey this year. But I am getting things done around the house. I figure out a chore I can do while sitting or in front of the TV, so all is not lost!
She was giving me below the recommended dose , 300 mg each time on the 3 loading dose. She increased it to 400 mg for the 4th dose but would not increase the interval so it is every 8 weeks. My assumption is she does not want me reacting so is doing this painfully slowly. I am not out of patience with this yet so I will lie low. I am sorry you are having a hard time Mimi, I will keep you (and Seenie) in my thoughts.
Mimi,
What are you going to try next?
mimiB said:
I am glad it might still work for you. I got about 2 weeks worth of pain relief from 600mg in the third dose ( I am sure I must weigh more than you ) and they were infusing me every 4 weeks. I thinkmy first two doses were 500mg.
It's a not so excellent adventure, for sure !
I've never heard of Apremilast. I'm keeping a list of drugs that people mention on this site in case Remicade doesn't work for me. I failed MTX - made me too sick and Humira didn't help. I hope you get approval for Orencia - is there an appeal process? Perhaps the arthritis foundation can help you with getting approval? I hope you quickly find a med that helps - I know how frustrating it is !
Hi Mimi, I don't know if the Arthritis Foundation can help get your Orencia approved - it just seems they should have experience in helping patience navigate through the gates to get approval for arthritis medication - I think it's worth asking. I've only had 2 Remicade infusions without any side effects. My third infusion is April 10th - still waiting to see if it will help. I couldn't tolerate MTX - it made me too sick.
Frances