Well...yesterday I began infusions of a new miracle drug called Actemra at the Infusion Center. About 7 minutes into the infusion I started to feel "funny" ....my throat felt scratchy and constricted. Something was not right. A heavy weight descended on my chest, like I might drown. It was hard to breathe and difficult to swallow.
Luckily Nurse Lynn was there within seconds and stopped the IV and began to administered other meds. She called a code and soon the room was full of Nurses and a Doctor...more meds were given after another bout of feeling "more funny" ...finally I started to feel better but was still wonky and then began to feel better....just tired.
I will live to see another day. The meds made me real sleepy and I spent the afternoon asleep. Far Guy was with me for the infusion and kept watch over me in the afternoon.
Darn. I failed another med. It seems hopeless...I wonder if they will ever find a RA med that will work for me?? So far I have failed Arava ( mouth and tongue ulcers), Humira ( six months with no change in symptoms), Enbrel (extremely high blood pressure), Orencia ( tremors, headache, fatigue) and now Actemra.
Enough excitement for the week. My RA Doctor is aware and I have an appointment to see my Primary Care Dr in Grand Forks, ND next week.
Far Side
I didn't realize how much you are going through. I am adding you to my list of people who are getting daily prayers. Oh, wait: you are already there. So sorry to hear about all this. Sending you lots of love.
ReplyDeleteGeez... :-(
ReplyDeletedownright frustrating...they can put a man on the moon but need to channel those scientific minds elsewhere that benefits real people
ReplyDeleteOh no - how scary! And frustrating! Hope you are feeling OK today after such a frightening ordeal yesterday.
ReplyDeleteOh my is right! That had to be scary!
ReplyDeleteI hope you can find something to give you some relief!
ReplyDeleteOh, dear! I guess “what’s well that ends well”. I love the photo of the old fence. I have lots of old fences. Some Larry called fences to no where because they connected to nothing. Just a memory of a pasture’s past glory! Galla Creek
ReplyDeleteSo glad they were on it right away! That was horrible and frightening.
ReplyDeleteWhew!!That must have been so scary. Hopefully one of the new drugs will actually help you.
ReplyDeleteYikes, that’s scary! I’m glad you’re in good hands and have a good care team.
ReplyDeleteYou did not fail the meds; they failed you.
ReplyDeleteOMGosh!! That was really scary!
ReplyDeleteIt is so very frustrating. I tried all kinds of meds for my fibro and arthritis when I was first diagnosed. I either had no reaction at all or an overreaction and awful side effects...but not nearly so immediately severe as you just had--OMG! The one pill we finally found that could take the edge off the sharp pain and I didn't have a reaction to--Darvocet--was bought up by some pharmaceutical company so they could discontinue it and put out something else that cost an arm and a leg--and I couldn't take (bad reaction). I am unable to take anything for pain. I wasn't able to have chemo. Eventually had a severe reaction to the immunotherapy. Thank God I was able to be on it long enough to shrink the tumors even if I am still recovering from the treatment. Thank God you were helped right away!
My son went into anaphylactic shock from a sulfa medication...trouble breathing, eyes rolling in his head, etc. Thankfully we lived very close. That was the most terrifying drive to emergency!! I am soooo glad you are okay, Connie!!
Oh no!! How absolutely terrifying! Truly hope you find some relief from symptoms, without horrific side effects.
ReplyDeleteYikes. I've witnessed that same reaction to an IV med when hubby had an infusion of Chemo.
ReplyDeleteThe stress level for you guys must have gone through the roof.
My hubby ended up staying overnight from it.
I am so sorry. You cannot catch a break.
ReplyDeleteThat was a very frightening allergic reaction! Were you able to call for help, or was the nurse alert to the possibiity. In any event, I'm glad you made it through that situation. I do hope they find something you are able to take that will give you relief.
ReplyDeleteThank goodness you were being well monitored,
ReplyDeleteand now your ordeal continues. Wow! That was too close.
How frighten you must have felt when it happened, thankfully you are ok but another set back isn't what you want or need
ReplyDeleteWell take that off the list for sure. I am sorry it didn't work out but you were certainly able tolerate the med. I witnessed a patient that received the wrong blood type of blood transfusion. That too was a situation where they had to stop it immediately and monitor the side effects which were bad. Again, I am sorry that didn't work out for you.
ReplyDeleteYou didn't fail. the meds failed. For many of our meds there are side effects and some side effects can be very serious.
ReplyDeleteThat had to be scary. Glad it turned out well and that you are home. Hopefully they will find something to help you with the RA... so sorry you are going through all of this.
ReplyDeleteOh Connie, I'm so sorry that you had to go through that. I can imagine how scared both you and Far Guy were when it happened. I'm so glad that Nurse Lynn was close by and able to help and then call for more help. I am surprised that you weren't hospitalized overnight to monitor for more issues.
ReplyDeleteWhen I went for the final test to see what was wrong with my heart, the tilt table, my heart stopped for 34 seconds. I passed out with one nurse in the room and woke up to a room full of doctors and nurses, and had my pacemaker the next day. Apparently I was clinically dead but they got my heart started again with lots of meds. Surprisingly they let me drive home less than an hour later. I remember nothing of the drive, only how awful I felt. I went home and slept for 5 hours which I never do.
I am praying for you every single day. Far Guy too. Just take it easy for a few days.
Blessings and love,
Betsy
Oh my gosh....how scary is that? Thank God you're doing OK Connie. I'm so glad the nurse wasw with you when things went south. Will they ever find an RA drug that works for you? Praying for that soon. So sorry to hear that happened to you. Take good care!
ReplyDeleteOh poor you! How miserable that your system doesn’t seem to be able to support these drugs. At least your nurse reacted quickly.
ReplyDeleteOn another matter entirely: what a great photo of barbed wire!
My gosh! It sounds like you almost died! You rest! Rest lots. Cleaning the bathroom was a huge job, please rest!!!
ReplyDeleteI am so sorry.
ReplyDeleteThis is really tough. With my COVID cough, nothing to do but treat symptoms. It is very discouraging.
Oh gosh, I feel so bad for you. I've been through that ordeal too. After failing to have a positive result to everything they were trying, I was informed my (lack of) results did not fit the protocol of their "study" and I was kicked to the curb.
ReplyDeleteI'm so sorry. I am glad the nurses were paying close attention and able to treat you immediately. That had to be very scary.
ReplyDeleteOh no! That has to be so disappointing. I'm in remission pretty much and I just take a small dose of prednisone and hydroxychloroquine. Have they given you any steroids for it? I pray they find something soon. It's too bad Enbrel didn't as it worked for me for years. I hope they have some answers this coming week.
ReplyDelete