Had a bit of a scare today...

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inkjunkie

inkjunkie

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Ernie has been getting Remicade infusions for a while now. Last one she had she had a mild reaction to it. She head one scheduled for today....dropped her off and went running errands as I had 3 hours to kill. About an hour later I got a text, come and get me, I feel horrible....also tells me I have to go upstairs to pick her up. I get there and she is in a whole different time zone...nurse tells me they had just got started when Ernie looked like something was not right. Stopped the infusion, had her doc come and visit with her...gave her some sort of pain med....she does not tolerate pain meds at all....and a crap load of Benadryl. Nurse told me to keep an eye in her for the rest of the day....and to let her sleep it off. Ernie passed out on the ride home. Woke up long enough to wander inside, get undressed and find her chair....Before falling asleep Ernie told me that the pain level was very similar to giving birth....
 
I think I would be at the ER.
 
Wow scary stuff! I'm sure it was a terrible experience for both of you! I hope Ernie is feeling better and is able to sleep it off without any lasting effects.
 
Has her doctor mentioned trying Stelara? It's a biologic shot, instead of an infusion. I take it for psoriasis, and it cleared me completely. I have a touch of the psoriatic arthritis too, and it helped that also. It's expensive as hell, but worth every penny in my opinion. The company that makes it has a help program to make it more affordable. I hope she gets to feeling better.
 
JDMopar said:
Has her doctor mentioned trying Stelara? It's a biologic shot, instead of an infusion. I take it for psoriasis, and it cleared me completely. I have a touch of the psoriatic arthritis too, and it helped that also. It's expensive as hell, but worth every penny in my opinion. The company that makes it has a help program to make it more affordable. I hope she gets to feeling better.
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Already tried that one...the markers that are monitored for this type of arthritis didn't budge when she was on it. One of the meds they had her on was helping but she had a reaction to the injections. I gave her a shot every two weeks and she would have swelling and itching for 3 weeks after each shot. Her troubles started out with the skin problems...you may want to have your doc keep there eyes open for this arthritis, it flat out sucks. Ernestina has days where every step she takes is very painful. She literally moans every step...
 
JD, just reread your comment...did not catch the arthritis part...kind of stressed still....
 
RustyRatRod said:
I think I would be at the ER.
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X2

Prayers and best wishes for Ernie, Doug. Sounds like you need to monitor the hospital staff very closely while they treat her.

It seems suspicious (don't know anything about it though) that she has had this treatment before without problems and THIS TIME she has a severe, adverse reaction.

Again best wishes for your soulmate.
 
inkjunkie said:
JD, just reread your comment...did not catch the arthritis part...kind of stressed still....
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With a day like y'all have had.....I imagine you ARE very stressed! I'm very fortunate that my arthritis part of the deal isn't too bad. I was on Celebrex for that for a long time, and it worked great. I recently had to switch to Meloxicam, because the friggin insurance at work changed....and required too much hoop jumping to get refills on the Celebrex because it wasn't a generic. It sounds like Ms. Ernie has arthritis pretty bad, so my prayers and best wishes for her to feel better soon are offered.
 
That is a scary situation. Hope this reaction passes...and soon. Thoughts and prayers coming your way guys!
 
Thanks guys. She slept thru the night, good solid 10 hours. She is still very tired/groggy. And she is in a lot more pain then normal but she will be ok. Will be going with her when she visits the rheumatologist about what is next. Her doc is a bit intimated by me, going to tell him exactly how I feel about this. She was on Remicade for over 14 months and not feeling any better...and the blood markers had not gone down. When she first seen him we were told that a lot of the drugs that are used to treat psoriatic arthritis and the other nasty thing she has, ankylosing spondylitis, are very hard on people. This AS thing is some sort of arthritis in her hips/spine that may maker her spine fuse to her pelvis. Anyways, I think it maybe time to talk to them about what will happen with no meds. She can't even handle NSAID's anymore. She took one 5mg pill of OXY a while back and was blasted out of her mind for a full day...Sorry for rambling, Thanks for your concerns.
 
I just found this thread.

Sorry to hear this Doug. I also agree that she should see another doctor. This one doesn't seem that he's helping any.


You have to watch drugs and their side affects now days. It's like the drugs cause other side affects so that they can sell you more drugs for the side affects....
 
inkjunkie said:
Thanks guys. She slept thru the night, good solid 10 hours. She is still very tired/groggy. And she is in a lot more pain then normal but she will be ok. Will be going with her when she visits the rheumatologist about what is next. Her doc is a bit intimated by me, going to tell him exactly how I feel about this. She was on Remicade for over 14 months and not feeling any better...and the blood markers had not gone down. When she first seen him we were told that a lot of the drugs that are used to treat psoriatic arthritis and the other nasty thing she has, ankylosing spondylitis, are very hard on people. This AS thing is some sort of arthritis in her hips/spine that may maker her spine fuse to her pelvis. Anyways, I think it maybe time to talk to them about what will happen with no meds. She can't even handle NSAID's anymore. She took one 5mg pill of OXY a while back and was blasted out of her mind for a full day...Sorry for rambling, Thanks for your concerns.
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So sorry to hear of your wife's health issues . She has my sympathy .I have lived one half of my life with ankylosing spondylitis diagnosed at 28 i am now 56 . I have been on indomethacin 50 mg originally 3 times a day with meals but i am down to twice a day except when i have a flare up and then i take my lunch dose, i also take 2 sulfasalazine 500mg and 1 misoprostol 200mcg as a stomach buffer with each indomethacin . I can relate to the pain she is feeling it just gnaws at you and wears you down . People can not relate to the discomfort she is in as i say to my wife if i get distant and cranky its the level of pain i am in and not her. It is hard on everyone for sure . As i have aged i find it is getting a bit better as i age and no two people have the same degree of affliction as i think i have a mild case and not as debilitating as it could be . My prayers are with her and everyone in her immediate family as a illness like this is not obvious to everyone . All the best and good luck for her to find pain relief . Bob
 
BJs Duster said:
So sorry to hear of your wife's health issues . She has my sympathy .I have lived one half of my life with ankylosing spondylitis diagnosed at 28 i am now 56 . I have been on indomethacin 50 mg originally 3 times a day with meals but i am down to twice a day except when i have a flare up and then i take my lunch dose, i also take 2 sulfasalazine 500mg and 1 misoprostol 200mcg as a stomach buffer with each indomethacin . I can relate to the pain she is feeling it just gnaws at you and wears you down . People can not relate to the discomfort she is in as i say to my wife if i get distant and cranky its the level of pain i am in and not her. It is hard on everyone for sure . As i have aged i find it is getting a bit better as i age and no two people have the same degree of affliction as i think i have a mild case and not as debilitating as it could be . My prayers are with her and everyone in her immediate family as a illness like this is not obvious to everyone . All the best and good luck for her to find pain relief . Bob
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Thanks Bob. You could not me more right about people not understanding. All anybody ever sees is a snapshot, and for that very brief period her pain may be very low. I go thru this all the time with my mental health troubles....not to long ago I was looking for a new doc. Was in my initial consultation with a woman in the clinic down the road a ways.....all was going well....til she told me I don't look bi-polar. I asked what exactly does a bi-polar person look like...got no answer. I responded with I have been dealing with this for 32 years now....been in therapy for close to 20 of that.....if I don't know how to deal with it by now something is seriously wrong with me.
All these arthritis diseases are horrible....not to far behind cancer in the "this sucks" category if you ask me. I only have the garden variety arthritis, the stuff you get from just being alive and it is often very hard to deal with. Can only imagine what the pain must be like to have what you and my wife have. My wife went from a very free spirit, a woman that was spontaneous and truly a joy to be around to a woman that is often withdrawn, and very distant.
 
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