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Posted 3/29/2023 2:41 AM (GMT 0)
Bacon Girl,

I hope you are feeling better and that you respond quickly to your new med. Did your doctor give you any Zofran for nausea? They tried to give me the 4 mg Zofran but I started asking for the 8 mg for when things are challenging.

I hate flares like that. I don't start to get really concerned until I am sitting on the toilet with a puke bucket in my lap. (My back end doesn't realize it's not hooked up when I go into a flare.) Just a thought.... But when I am laying on the floor I use an electric blanket for my body and I use cold clothes or ice on my head, neck and right where my abdomen is hurting. It might be psychosomatic but....... Just throwing it out there. But be careful. My spouse is afraid of the mixing of ice, electric blankets and bathrooms. ....

Clo
Posted 3/29/2023 11:29 AM (GMT 0)
Clo, we are the same, girl! Ive got my ice pack, electric heating pad and microwave neck wrap going. So far, it hasnt caused any burns or fires (my electric one stops after 60 min). I have to lay in the hallway though by every bathroom. We have powder room size bathrooms so even the main upstairs one cant fit me on the floor without half my body hanging out the doorway. I have little pillow camps set up downstairs and upstairs in each hallway. There is zero privacy at the moment due to this flare. My partner even tries to lay with me and Im like “go away!!” Haha I do not wish to be comforted between poops. Id rather this be a solo venture. But I have chronic nausea due to SIBO so I always have lots of zofran and dronabinol here. My nurse tried for a while to get Emend approved but my insurance just wouldnt. It is SOOO expensive but is supposed to work amazing for bad nausea. I went to pick it up and like 2 pills were several hundred dollars.
Posted 3/29/2023 2:45 PM (GMT 0)
Oh I'll just make one quick point - I am the same way about not wanting anyone around me when I am not feeling well!! My husband tries to comfort me, and NOOOOOO. Once on the way to a colonoscopy I was throwing up in a bucket in the car. He pulled over and was rubbing my back. OH god STOP. I forced myself not to snap at him, because who doesn't want a concerned partner?? Do I want someone who doesn't care or yells at me to not puke in the car? But really... just leave me alone, please.

I've said we will always need a home with at least two bedrooms & bathrooms. When I am not well, I need a bedroom and bathroom all to myself.
Posted 3/29/2023 3:37 PM (GMT 0)
SerenityNow your husband sounds amazing and so caring for you. I am the same way as you are. I kind of go inside myself and cope best when I am not being touched or rubbed. I think the added stimulus is too much to focus on and I really just need to be alone to breathe through it (and cry sometimes). It is not something I like people to see. The worst is when I am in the hospital in a shared room with someone else and they have to hear everything. I always request a beside commode but I am sure they can hear everything through the flimsy curtain. C diff is the only time I get my own room so I guess it has its benefits (meaning only one benefit haha). We are lucky that we have 4 bedrooms (it’s just the 2 of us) and we have actually never shared a bedroom. I have a lot of insomnia and chronic nausea/gas so we were fine just splitting them up. I did not want him breathing farts all night haha He got the master with the bathroom inside so that’s why I am out in the hallway haha
Posted 3/30/2023 8:09 PM (GMT 0)
Rinvoq was approved!! Thank the lord. My biggest issue is getting Shingrix! I have called so many places and nobody will give me the vaccine because I am under 50. How did you guys get it? I am so stressed out over this and didn’t know there was an age restriction. The pharmacies also need proof of chicken pox and of course my pediatrician isn’t close to me and I cant drive anywhere. They have record of it but need me to go to the office to sign a release form for my records. Today could not have gone any worse honestly. Why does everything have so much red tape?
Posted 3/30/2023 9:27 PM (GMT 0)
What....? I didn't realize you HAD to be 50. I thought it was just recommended for people over 50 but if you wanted it you could get it.

Oh brother! I just googled it, and the quick answer (meaning I didn't delve into it) was that it has only been tested on adults over age 50.

I had chicken pox as a child but how would I ever be able to prove it all these years later??
Posted 3/30/2023 11:45 PM (GMT 0)

Bacon Girl said...
Rinvoq was approved!! Thank the lord. My biggest issue is getting Shingrix! I have called so many places and nobody will give me the vaccine because I am under 50. How did you guys get it? I am so stressed out over this and didn’t know there was an age restriction. The pharmacies also need proof of chicken pox and of course my pediatrician isn’t close to me and I cant drive anywhere. They have record of it but need me to go to the office to sign a release form for my records. Today could not have gone any worse honestly. Why does everything have so much red tape?

My GI had to send some form to my insurance company for me to get that vaccine, if I'm remembering correctly. I got it when I was 38. I didn't get it before I started Xeljanz though. Is he really going to make you wait?

Why do they need proof of chickpox? I didn't. That's more than a little insane. Got my Shingrix at my PCP's office, no problem. My parents never even brought me to a doctor when I got chicken pox as far as I remember.
Posted 3/31/2023 8:18 PM (GMT 0)
Geez! I wouldn’t be able to find chicken pox proof either. That’s insane. I guess I could show them some scars! If I could remember where they are.

You’ll probably have to get your dr involved to ok the vaccine. I shouldn’t think you’d have to wait tho— it’s not a live vaccine. But I guess you need to do what your dr suggests. You might ask is he can do it later tho

Good luck with rinvoq!!!!
Posted 3/31/2023 8:46 PM (GMT 0)
My mom ended up calling a pharmacy in my town and using whatever powers she had, they did it for me without any insurance or doctors approval but I had to sign a form saying they aren’t responsible for anything. Yeah whatever. They charged $250 for it but she had a good RX coupon so I paid $155. What a nightmare trying to get this done and being on the phone all day on the stupid toilet. I had to wait at the pharmacy for 1.5 hours and felt like I was gonna pass out. My doctors and insurance company were ZERO help with anything. None of my doctors would call my insurance or the pharmacy. I won’t forget any of this and am pissed at all of my doctors (or their nurses) and hate my insurance company. The things we have to do to get treatment. Just insane and makes me hate our medical system. Can’t wait to go back for the second shot.
Posted 3/31/2023 9:24 PM (GMT 0)
That all sounds extremely frustrating, I'm sorry. Mine was free and I had zero wait. Wonder if you could get the second shot at your PCP office like I did? No one should have to wait at a pharmacy for 1.5 hours for a routine vaccination!

When do you start the Rinvoq?
Posted 3/31/2023 9:54 PM (GMT 0)
Be prepared for the vaccine to kick your butt
Posted 4/1/2023 2:01 AM (GMT 0)
It kicks your butt?

I haven't gotten mine yet... And I'm Flaring according to my last scope... And my Infectious Disease doctor told me to get it even though I'm on Remicade. I've been putting it off. Yikes!!! I don't want anything else kicking my butt right now. Bacon Girl???? You laying in the bathroom/hallway any additional amount of time due to that shot???

And I am like you guys .. don't even look at me when I am sick. I lock myself in the master room. I'll ring my little bell if I want you. (Yes, my spouse bought a bell AND a baby monitor for just in case...)

But he wants to check on me and it drives me crazy. I ordered a bunch of extra decorator pillows so I would launch them at him if he opens my door.... So he bought the bell and baby monitor so he could hear me if I needed him. I was sorta upset but then I really did need him one night and was relieved he did that... Lol...

When I am sick I can't stand for people to touch me. Funny... The one time I used the bell and monitor was when my electrolytes went crazy and I ended up with a body cramp that started at my shoulder and went all the way down that side (front and back) including the leg and foot. He cautiously opened the door and I was screeching and screaming to rub Theraworx on that side of my body... And he was hesitant to enter and flat out scared to touch me. (Hey...I didn't really mean those threats I said when he was rubbing my back that one time... Lol)

I digress..... If you can get the shot at your PCP....insurance might pay for it. Call and check first. And that wait... That's just sooooooo wrong. I have this "I gotta go" card that my GI gave me. (You can get them from the Crohn's and Colitis Foundation too) I sometimes "cheat" by flashing the card and telling them I'm in the middle of a flare and I am incontinent when that happens. I'd sure hate to have an accident on their nice clean floor... Depending on how daring I feel.... Or if I think they might not care... I have been known to say it alittle louder to shame them into getting me in and out quicker. And the people in front of me... They frequently say .. please take her first ... I know .. shameful.... But I'm not lying and I really don't want to have an accident. Although... If you live in the "area" be prepared to have to face some of those people later on. LOL.

Bacon Girl, I am so glad you are getting on new meds and that it was approved. I hope you see results quickly!

Clo

Post Edited (clo2014) : 3/31/2023 6:05:47 PM (GMT-8)

Posted 4/1/2023 1:01 PM (GMT 0)
WOW countess you are right. Ive never reacted badly to vaccines besides arm pain for like 1-2 weeks but I thought your comment was exaggerating. Like how bad could it be? Started shaking uncontrollably last night and had a high fever and hallucinations. Took several tylenol and benadryl at like 4 am so I slept a little bit but it SUCKED. I haven’t hallucinated since I had c diff years ago. Only GI difference is more nausea and more cramping but it’s hard to know about the diarrhea since I usually am up all night pooping anyway (and still was). Body pain and muscle aches are 10/10. My arm 10/10 hurts and is useless so get it on whatever arm isn’t your dominant arm. Hoping this crap is gone by Monday so I can even start the medicine. My pharmacist said this should be like 2-3 days of suffering. I am DREADING the second shot!

Sara and Clo my PCP will not help me at all with it. The pharmacist was shocked about it too. She said it would be covered if done by them but it’s not. My insurance said it’s not covered for anybody under 50, no exceptions but my PCP and GI wouldnt even call them. They both said several times its the other person’s job so neither one did anything. I called my insurance several times but it didn’t change the situation. My PCP said it’s $295 per shot but they were demanding a Chicken Pox blood test before the vaccine and I did not have time to waste doing useless crap. My elbows are all bruised from getting bloodwork several times last week. I am super disappointed with them and am going to change PCPs when I am better.

Clo I do have that card but my main issue is standing because I am so weak. The bathroom was right next door so it was really just the waiting. My stepdad took me and told them I was really sick and they said to just come back another day when I am better haha yeah I wish!
Posted 4/1/2023 3:26 PM (GMT 0)
Sheesh! Sometimes I wish just once for some of those people in insurance and drs offices would have to suffer with UC and then be told they have to wait for this or that.

Yes I’ve heard horror stories of the shingrix and decided not to get it. My husband had a reaction — mild fever so not much — but he NEVER has reactions to vaccines. Covid vaccines put me in bed for 3 days so I’m taking my chances with shingles. I already had a mild case years ago so I’m hoping (and blindly believing) that I’m immune now.

Hope you get better soon BG. Keep hydrated! And keep us posted on your progress when you start rinvoq!
Posted 4/2/2023 10:52 AM (GMT 0)
Flowersgal Yeah I always think that too. Like if this person could just flare for one day then maybe they would have more compassion and understanding. Honestly, the shot made my flare 100x worse so I wouldn’t get it if you are in remission. Not worth it. I am not getting the second dose if I am doing well on Rinvoq. I’d rather have shingles instead of risk flaring. It doubled my BMs overnight from 10 to 20 and pain is more constant instead of intermittent. Blood increased by a lot. My doctor never warned me it could make the flare worse and I completely regret taking it. Definitely something to keep in mind if your doctor thinks you should get it. The fever finally broke this morning and I was soaking wet. I hope it doesn’t come back. I can’t start Rinvoq if I have a fever.
Posted 4/2/2023 11:11 AM (GMT 0)
4 years on xeljanz and I didn't have a shingrix vaccine... I thought I was missing out on something but hearing these horror stories maybe it's not so terrible... Like many things, shingrix is not so easily available outside the US.
Posted 4/2/2023 1:14 PM (GMT 0)
Shingrix is easily available in Canada. I had it when I was in remission and I had a similar reaction to the Moderna COVID vaccine. Felt queasy, headache, aches and chills for one day. Oh, and sore arm. So in my case it was worth getting (I've heard shingles is a horror show). I bet I would have had a much worse reaction during a flare up, so I guess it was good I had all those shots during remission. Hope I'm over this flare before my next COVID booster.
Posted 4/2/2023 5:28 PM (GMT 0)
Sorry, i should have said north America....
Posted 4/3/2023 4:09 PM (GMT 0)
I had zero side effects from Shingrix other than a mildly sore arm.

If I hallucinated from a vaccine, I wouldn't take the second one. That's crazy. Your insurance and doctors sound really unhelpful.

A Mayo Clinic GI I consulted with told me the risk for shingles on xeljanz is misniscule. I assume it would be the same very low risk on Rinvoq.
Posted 4/3/2023 5:01 PM (GMT 0)
Sara that is good to hear honestly. The rinvoq nurse said its not even listed as a requirement on their drug label so it is the doctor’s choice. That made me feel a little better about it if I decide not to get the second dose. I took my first dose of rinvoq today and I am alive so now reaction yet. Hoping for good things here!!

Poopydoop, yeah you aren’t missing out on anything good.

Serenitynow I am glad it didn’t mess you up too horribly. I dont have a fever today so I was able to start rinvoq.

I ended up getting super high last night just because I was in pain and it did help a lot. My period came Sunday and I have 10/10 bad periods so that is probably making my flare worse and it made the pain unbearable. I am worried about all the flare bleeding combined with my period bleeding so I will probably be anemic at my next bloodwork. So surprised that my body still feels safe enough to get pregnant so I guess that is a good thing.
Posted 4/4/2023 3:57 AM (GMT 0)
Bacon Girl,

I hope your new med kicks in quickly.
Your description of the vaccine symptoms sound awful! Are you feeling better today?

On the vaccine.... I had a bad case of shingles in 2020? Or 2021. Horrid! I went to the ER. I was in so much pain. My back, abdomen, neck, head and eyes hurt so much. They missed the rash and sent me home. They thought I was constipated. I got home (the rash had suddenly appeared and it was much worse by the time I got home so I took a pic and sent it to my infectious disease doctor and he called in antivirals. It ran down my spine a few inches and then wrapped around my side and abdomen on one side to the middle of my abdomen. Plus I had small clusters on my scalp, face and at the top of my buttocks and thighs. It took 5 months for the large blisters that broke open and scabbed over to heal and fall off. I was on antivirals for 3 or 4 weeks...off for a week and then back on. Every time I went off the antiviral medication new blisters appeared. The itching and pain finally stopped about 8 months after I first broke out in a rash. And by pain...I mean a hot poker being laid on your skin followed by poison ivy itchiness. I do not want chicken pox/shingles again... But I don't want to flare worse than I am right now either. I'm gonna have to talk to them about this again.

I've never gotten high.... But sometimes with all the stuff that happens with Crohn's.... I seriously think about it. But I'm too much of a control person... The thought of losing any control bothers me more than the pains right now. If that changes.... I'll change too... Lol..

Clo
Posted 4/4/2023 11:28 AM (GMT 0)
Hey Clo! The vaccine side effects are mostly gone but it made my flare a lot worse. I had been going about 10x a day and now its 15-20x a day with more pain so that is tough pooping so much more. But damn. Your shingles description sounds horrible too and I dont want that either. Its like we just can’t win. I battled mrsa really bad for 9 months and was in 10/10 pain but would still rather have mrsa (had covid at the same time) than this flare. I think its just because my UC has been severe for a long time and that pain is unlike any other I’ve ever had in my life. How old are you? Has your doctor mentioned getting Shingrix? Idk how your own immunity is if you have already had it so that is something to consider. I don’t know much about it.
As for getting high, I have prescription Marinol (nausea med with THC) and took 10 mg because I wanted to see if it would help my pain. Its this drug mostly used for chemo patients who can’t eat or people with anorexia but my doctor gives it to me because I suffer from severe nausea. I’ve only made weed tea once and its kind of the same high. It doesn’t change my mental thinking or perceptions of anything. Like you can still have a conversation but you might slur your words. It’s mainly that your body is like a blob. I couldn’t lift my head or walk without swaying. My partner had to carefully take me up to bed. It’s a little like when you get pain meds at the hospital but those make me super loopy so weed/marinol is just much gentler than opiods. But they both result in lessened pain so that is all I needed right now. If you are having a lot of pain, I would give Marinol a try if you can get it. Its not something that makes you silly or weird. You are still you but just a sloth version of you.
Posted 4/4/2023 5:57 PM (GMT 0)
Bacon Girl,

Yea!! Glad that it's getting better.

I'm older... Over 60. My GI, PCP and Infectious Disease doctor are all telling me to go in for the vaccine. My GI keeps saying... Look how much you've improved in the last few years... (But somehow my colonoscopy report doesn't look like I am in remission..) so you should have it now. I'm thinking... 'Dude... You don't have to live with what happens when things go south on me." It's been one of the few times I've balked at doing what they keep telling me to do.

I'll ask about the marinol. Zofran causes constipation and it takes 30 minutes to work and then it only works for maybe 3 hours. So I'm looking for something better.....

And sloth like sounds good. It seems like my mind is always spinning...

Clo
Posted 4/7/2023 1:49 PM (GMT 0)
Hi B Girl! I remember you. I'm rarely on here these days - out enjoying life with my J pouch. But I wanted to chime in to say I hope you're doing better by now. Also, I am terribly sensitive to NSAIDS. Years ago (like, 35 years ago) we were on vacation at a rustic cabin, sleeping on a terrible mattress, and my back hurt so much I took Advil for several days. I had the worst, bloodiest flare! Since then, I've been afraid to take any NSAIDS. An orthopedist gave me an NSAID cream for a hurting knee about 5 years ago and even that made my gut hurt!
Brings me back to that old refrain, "We're all different!"
Posted 4/7/2023 2:47 PM (GMT 0)
songlady! Good to see you again! I am glad you are doing ok. Yeah this is just my nurse’s guess at why I flared but I took it for many years with no issues so who knows? I think it is more likely that Simponi just stopped working on me. I am still avoiding nsaids for now though since my flare is so bad!

Day 5 of Rinvoq and main side effect is severe exhaustion and some headache. I basically lay on the couch all day. No energy to do anything! No improvement yet in the flare but my nurse said it takes at least 2 weeks to notice anything. Just seems so slow compared to Remicade and Simponi since I felt better the next day! Hoping I can get through it without going to the ER.
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