#xeljanz

[kinkykinard]

they've got to stop coming up with new medications and naming them like they're world of warcraft villains

[sick-kids-are-cool]

I just had my appointment with my rheumatologist I guess were doing it were going to try micro dosing with prednisone

Were also switching from the benlysta to xeljanz she said the xeljanz works fairly quickly if its going to work at all so shell see me in 2 months

And she thinks my immune system problems are more wide spread than just lupus and idiopathic rheumatoid arthritis/ juvenile rheumatoid arthritis

My bloodwork is getting progressively worse as well as far as inflammation and shit so she can see that its not just stress from my current situation that physically my body is getting worse

And I'm staying on the methotrexate even though idk if its really helping anymore tbh

[spooniestrong]

Know what I hate?

Those damn commercials for Xeljanz that say “Your body deserves better than rheumatoid arthritis”. No shit, Sherlock! Are you BLAMING ME??? Because, newsflash: I can’t control my immune system!

[kddgetshealthy]

So my GI appointment went...surprisingly well. I talked to the nurse who was helping Dr. Snyder, Tammy (who is amazing), not his regular one who told me to take Tylenol and that my scope was fine and told her all about that call. Apparently they have had a LOT of issues with her pulling this shit, and as I thought, she never even talked to Dr. Snyder. She told me to tell Dr. Snyder, but apparently she’d already told him. He comes in and is visibly aggravated and told me “You should ALWAYS have a pain medicine prescription, especially for situations like you’ve been in” and wrote me an RX no questions asked. It was the first thing he did. I have a feeling the nurse I talked to is in some deep shit because he was not happy with her at all. I told him about the blood clot. I have an upper scope scheduled for Thursday to see what’s going on with the duodenum and why it’s so inflamed and he scheduled a different scan for the gallbladder. We are also switching me back to entyvio but at three week intervals. I told him I was terrified of going back on the xeljanz, and he agreed that wasn’t even an option. I’m looking forward to the good scope sleep Thursday :) I went to drop off my RX and the lady at Publix was like “I don’t know if we’ll be able to fill this whole thing with the new opioid laws but we will fill as much as we can” 🙄 He prescribed 60, so a thirty day supply, I don’t take them every day, I legit will hold out until pain is unbearable l and hoard them. Anyway, mom picked the up on the way to our house, and they filled the whole thing 🤷🏼‍♀️ I don’t think she knew what she was talking about and just had an attitude because I’m young and getting an RX for pain meds, must be a junkie, clearly 🙄 Ugh, hopefully things are looking up though :)

[unlikelykingdomphilosopher]

Guess who's back on methotrexate, bitches?

This loser!

Yayyy...now it's time to throw up, feel guilty for missing work, get dizzy/confused, and take a nap!

[daniellelom]

Remicade?

Have any of my fellow spoonies been on remicade? And what are your thoughts of it? I have tried so many different meds that I have completely given up hope on thinning remission is even possible.

[kddgetshealthy]

So this past week has been complete shit.

Thursday I woke up with severe stomach pain, diarrhea, vomiting, weakness and almost passing out but instead of blacking out it was white...which was terrifying because that’s only happened one other time, and that was when the doctor told mom if she hadn’t kept me conscious I wouldn’t be alive. I called Phil to come home as soon as the vomiting started because I was terrified I was contagious, and didn’t want Elle to get it. Mom had taken off to take my stepdad for his scope, but as soon as she got him home she came to take me to the ER. I felt like I was on the edge of death. I didn’t have the energy to walk down the stairs, I had to butt scoot. It was pitiful. Phil and Elle stand outside to see us off, and Elle just looks so sad wondering why she can’t go, too. It was so sad. I ended up simultaneously vomiting bile and shitting myself in front of the model home in our neighborhood, at this point I’m telling mom she should have called an ambulance. Luckily, we had prepared to be admitted and mom had packed me fresh underwear in my overnight bag. We get to the ER and they take me back before mom can get the car parked, so they have to go get her because I couldn’t even put the gown on without almost passing out. They get an IV started no problem, two sticks, but six more sticks to get blood for labs and cultures. My WBC is 36. Higher than its ever been. They want to do a CT but can’t until I pee...and even after two bags of fluid I can’t go so I ask them to cath me, which I think threw them off a bit. At this point the cath wasn’t even a concern of mine. They get the CT done after and I have duodenitis and a distended gallbladder. They call my GI, who I see today, and he tells them to come off the xeljanz. They were fully ready to admit me, but he told them not to. Which aggravates me because that probably could have saved me my ER trip Friday for the severe pain I was in. I called the GI, spoke to the nurse who said my scope from a MONTH ago “looked fine”, even though the whole reason Dr Snyder switched me from Entyvio to Xeljanz was because he said that it looked like Entyvio wasn’t working. She said he’d ask him about pain pills but he was in scopes all day...then she calls back two minutes later saying they won’t prescribe pain meds, to take Tylenol. After Tylenol didn’t do jack shit for the very severe pain I was in, I went to the ER. They gave me a Percocet when I got there, some fluids, and gave me roxicodone to last the weekend until I could see my GI, which luckily I’ve only had to take one, but this war on opioids is killing those of us with chronic pain. I don’t have a history of abuse, there was no reason he couldn’t have called me in enough pain medication to get me through until I saw him. To be honest I don’t even know if she talked to him or just made some executive decision that she wasn’t even going to ask. I will say, I’ll be having words with him at my appointment. 😩 Fast forward to Sunday, I noticed my arm was sore but didn’t think too much of it...until I rolled up my sleeve and noticed a red spot eerily similar to the one I had when I had my post partum blood clot. At this point, all the urgent cares have closed and I’m not looking to go to the ER unless absolutely necessary, since I’d already spent about $300 for my previous trips. I circled it with sharpie and made sure the redness didn’t get too widespread. So I text dad and ask if he can come watch Elle so I can go to urgent care yesterday (Monday), which I was nervous about because she’s never been alone with my dad or stepmom by herself and I was afraid she’d flip. But mom couldn’t get off and neither could Phil, and I knew it needed to be done. So I got to urgent care, the only one I KNOW has an ultrasound at 9am. I get there, pay $105 copay, get back and they do a d dimer to test clotting factor. Normal range is 100-400, mine was 718. So of course they want to do an US which has to be approved by insurance.

So I sit there waiting on that when she informs me the US is completely booked and I’ll have to go to Trident to get it done. She tells me to have them call her when they get it and let her know and she will advise me what to do from there. So I go, thinking no biggie, it shouldn’t take too long, she will call in some eliquis and I’ll be on my way. I get my US, the tech confirms the clot, calls her and SHE FUCKING SENDS ME TO THE ER. Even the nurse who triaged me was like “Why are you here?” because I was complaining about her just not calling in eliquis. At this point it’s 12. I call mom and tell her to relieve my dad and stepmom when she gets off work. I’m trying not to cry in the ER because the last time I was there was to view my grandma after she passed and all together I’ve had a shitty fucking week and it didn’t help. So they get my immunocompromised self in a curtained off “room” and no one checks on me or says a word to me for a good 40 minutes. Finally the doctor comes in and says “someone is reading your US right now, I’ll be back” he comes back almost an hour and a half later. With an RX for Eliquis. This whole trip could have been avoided, had the first fucking doctor done her fucking job. TF. Anyway, so I leave, FINALLY, and go to drop of my RX at Publix. As soon as I get there registration calls because “they didn’t get to see me”...okay that’s your fault that you didn’t come see me in the THREE FUCKING HOURS I WAS THERE. I had a $175 copay, $140 if I pay upfront because I get a discount, so I pay it. I’d already paid $80 (it was $105 beforenthe discount) for the US. I go into Publix, try to activate the copay card they gave me for the eliquis, which says its invalid. I ask the pharmacist how much it will cost just to run it through insurance...IT REQUIRES A FUCKING PRIOR AUTHORIZATION, WHICH ER DOCTORS DON’T DO. So she calls trident and they give her another card number. I try that and it doesn’t work either. Finally I tell them I’m going home, I leave the script and they said I could call the copay card number and talk to someone and then call them back. I call phil on the way home SOBBING. This whole past week has been SHIT, I have spent about $700 on ER visits and shit because apparently no one is advocating for me, and I feel like I’m just getting shit on. All of it coming out of our tax money that was supposed to be for bills because I lost my job after metlifes doctor decided I wasn’t sick. I’m fighting for SS, but right now we have one income. Finally, I get home at about 3:30 and Publix calls telling me they magically got it to go through insurance with a $0 copay. Like...are you fucking kidding me. So, yeah.

TL;DR: My health is shit, but Elle’s sweet face makes it seem not so bad.

[colitisphilitis]

Taking 20mg Xelianz makes me so incredibly tired I can't drink enough energy drinks to continue staying awake and be productive in my life. The edges of my vision are unfocused and lose feeling. My chest gets heavy as lead and slows down. Everyone speeds up around me. It hits me like a brick wall.