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Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/13/2017 6:17 PM (GMT 0)
I just talked to Accredo, and they are mailing it today, so I finally start tomorrow. It will 1 day shy of three weeks since I had to stop taking the Balsalazide. Here's to a quick response. The doctor wants to drop me from 40 to 30 mg prednisone as soon I start the Humira. Is Pred contraindicated while on Humira? I know my symptoms will get worse dropping if the Humira has not started working yet.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/13/2017 6:20 PM (GMT 0)
I wouldn't touch your prednisone dosage until you get a noticeable response from the Humira. Not contraindicated.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/13/2017 6:27 PM (GMT 0)
Ok, thank you. I am going to ask my doctor to leave it be then, because the week of 30 really did me in.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 12/13/2017 10:26 PM (GMT 0)
I am with iPoop. I would give it some time. As much as you want to get off the pred, and I understand it would be beneficial to get off the pred sooner, it's better taper a little slower than to have a full-force relapse. You should take the recommendation of your GI though really...
I am happy tomorrow is the day. I was hoping I was going to
open this and read that you had it.
sunflower8
Regular Member
Joined : Nov 2011
Posts : 164
Posted 12/13/2017 11:15 PM (GMT 0)
I use Accredo too. It’s a bit of an adventure getting it set up. Follow up was key in my experience. Hand in there, Spring. I have 4 kids 7-17...the Humira really hasn’t kept me down too much.
countess18
Regular Member
Joined : May 2016
Posts : 469
Posted 12/14/2017 1:18 AM (GMT 0)
once you get the starter set of Humira- make sure Accredo has the order to send next months doses. I called them and they claimed my doctor had not ordered anything but the starter dose (which was not true) so I had to go back to the doctor and have them call in the refills etc. Accredo does require follow up.
If you are not going to have the nurse ambassador there tomorrow- then have hubbie watch a u tube video on the injections. Make sure they are warmed up for at least 20 minutes/pinches up the skin and then holds the pen down for 10 seconds to deliver the medication (if you get a pen and not syringe type). I found the stomach to be less painful than the leg and there is no fat left on my stomach.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/14/2017 1:29 AM (GMT 0)
Good info on Accredo. When I called the lady was nonchalant and said they could ship it today. Made me wonder how long it would have taken for them to actually call me and set it up. I don't think I would have a nurse here by tomorow because I just signed up today. I think it will be ok for him to watch a video and do it though, as he is a very experienced massage therapist and had a semester of nursing school. Irish4me, that is good to know. I am really hoping to rebound quicker than I did in January. I hit a wall today where I just couldn't keep going at all by around 12, but my kids are much better this time around about
it all and are a big help. Sometimes they mess stuff up, but they learn in the process. My youngest is 6. He was pretty down today because he knows I am sick. I think the extra 10 mg of pred is finally helping a little because I have not been in quite so much agonizing pain tonight every time things move in my gut at all.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/15/2017 12:28 AM (GMT 0)
Talked to my GI today. He put me two more weeks of prednisone at 40 mg. My Humira arrived tonight. Not sure if we will do it tonight or tomorrow. I actually slept more of the night last night, and woke up feeling better than I have in days. I crashed really hard after 1.5 hours though and then find myself so tired it is hard to lift my arm. Might be partly the pred. The nurse from my pharmacy asked me what my average number of bowel movements were in 24 hrs. When I told her 9 to 15, she said "I don't mean in a week." Hahaha
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 12/15/2017 4:03 AM (GMT 0)
haha, that is funny. Some people just don't understand what we are dealing with.
I am so happy you received your Humira. I hope you have a fast result
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/16/2017 10:18 AM (GMT 0)
Woke up this morning at 4 am with sheets of hives on my arms, sides, and back and a sprinkling on legs and stomach. Did my loading dose at 1 pm yesterday. Talked to the pharmacist and took a benadryl. I also need to find out why after talking to the GI and home telling me to do 40 mg for two more weeks then tapering he wrote the script
for 20 mg until out.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/16/2017 3:52 PM (GMT 0)
Uh oh on the hives. Might have to discontinue humira. Talk with your gasteroenterologist before your next dose. A body-wide reaction like hives is an immune allergy/over reaction to the humira itself. Histamines might provide temporary relief. If your immune system is attacking the humira then it might not work as intended. Likely to have antibodies formed against humira, etc.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/16/2017 6:06 PM (GMT 0)
I talked to the pharmacist early this morning, and they told me to take pictures before taking the benadryl and to talk to the GI before next dose. If I did have antibodies, does that make me ineligible for all biologics?
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/16/2017 6:22 PM (GMT 0)
No just this one.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/16/2017 7:12 PM (GMT 0)
Good to know
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/17/2017 2:58 PM (GMT 0)
Last night I broke out in hives again. I think it happens because the prednisone is waning in my system. They were much smaller this time around, more like normal hives instead of giant sheets. And Itchy! I finally took a benadryl at 1 am so I could stop itching enough to go to sleep. On other news, I only went 5 times last 24 hrs and this morning I woke up with the start of a cold sore. I used to get those when I was particularly run down. I am thinking of starting to taper the prednisone since it dampens the immune system too. I thought my doctor had sent me the prescript
ion for 20 mg, but when I
opened the bottle, I noticed they were pink instead of white. That is when I realized they filled it for 2 20 mg. pills, and just didn't say anything about
a taper.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 12/17/2017 3:34 PM (GMT 0)
5x sounds positive. I hope the other symptoms are related to the prednisone and not the humira. Benedryl may help, but it makes me so tired. Cold sore is the worst. I seriously have a fear of them. Request that stuff that makes it go away quickly!!
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/17/2017 5:36 PM (GMT 0)
My hives go away for a while after the Prednisone, so I am certain it is the Humira. I won't know until I taper to 30 mg for a bit if it is the Humira or the Prednisone that has me down to 5x, because that is where I was at after 2 days of solumedrol and then 40 mg for a week 3 weeks ago.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/18/2017 7:41 PM (GMT 0)
Spoke with my GI nurse today. My doctor told me not to take the Humira again. He is going to switch me to Entyvio, which is what he wanted me on in the first place.
iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16483
Posted 12/18/2017 7:49 PM (GMT 0)
Glad you have a path forward, kinda what I thought the outcome would be! At least entyvio is gut-specific and less likely to cause body-wide reactions, like hives.
Good luck!
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/18/2017 8:05 PM (GMT 0)
I am not surprised either. Hopefully this one works!
sunflower8
Regular Member
Joined : Nov 2011
Posts : 164
Posted 12/18/2017 9:37 PM (GMT 0)
Good luck with Entyvio, Spring! That one was my GI’s first choice too! Hope it works well for ya.
notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17890
Posted 12/19/2017 3:34 AM (GMT 0)
I hope it helps too. I wonder how long it will take to get approval, and how long you have to wait between the treatments.
FlowersGal
Veteran Member
Joined : Feb 2017
Posts : 1877
Posted 12/19/2017 4:43 AM (GMT 0)
Loading doses are 0, 2, 6 weeks, then the schedule is every 8 weeks. I saw improvement at loading dose stage and by #5 I was off prednisone and having fairly mild synptoms occasionally, increasing as I got closer to the next dose, until #6, when I was pretty much symptom free and have stayed that way.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/19/2017 3:30 PM (GMT 0)
I don't know how long it will take to approve it. I have a feeling it will be January before I start because I had to change insurance due to my current insurance dropping off the exchange. I felt just a little stronger yesterday for the first time in a month, and my average is down to 5 to 9x, so either the Humira helped a bit, or I am responding to being back on 40 mg of prednisone. Either way, I will take it! The moment I so much as roll over as I wake in the morning I have had to rush to the bathrown for the past month and a half, but this morning I was up for 15 minutes! Almost can't contain my excitement. I know I have a ways to go, but any betterment at this point gives me hope I won't keep going down and end up back in the hospital. I also got really good news. My brother that has UC is in remission after being super sick on and off for the last 4 years or so.
Spring
Veteran Member
Joined : Jan 2017
Posts : 547
Posted 12/22/2017 11:51 PM (GMT 0)
I am doing much better Colitis wise. I go 3 to 5 times now, and the urgency is much better. Super annoying that I still have to get up in the middle of the night to go, though. Pharmacy said yesterday that Entyvio has been approved, and I left a message with my doctors office to let them know. It will be at least Tuesday before I hear back. I really want to get my first dose of Entyvio in end of next week so it fits in timing wise with when my next dose of Humira would be, but I am not super confident the docs office will get it together. I REALLY want to start tapering my Pred. The last few days have been much more irritating side affect wise. I have a horrible taste in my mouth after eating, food doesn't taste good, I never feel satisfied, wake up soaking wet, have crushing fatigue, brain fog, racing heart, and irrational thoughts. What do you guys think about
me tapering? I did so badly last time I tried to taper to 30mg, but that was before the Humira shots. I think despite the reaction I had, that it made a difference. I don't want to rush things and make it worse for myself, either.
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