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Crohn's Disease
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Posted 3/2/2018 4:15 PM (GMT 0)
I saw your post in another thread & wanted to bring it forward here so you would not be overlooked, lol. You mentioned being sick for a week & things kind of got knocked around as a result. A slow taper with the steroid is needed, otherwise you end up in another possible flare. You are experiencing what we call the love/hate relationship with pred!! Love what is can do for us but also hate how it can make us feel.

I have seen some drs rx Humira weekly but its usually after the patient is not getting the normal response. It will be up to your dr to make that decision. When I was on Remicade & Humira, my dr had me on Imuran. He said it helped ward off developing antibodies & enhanced the effect of the medication. Treatment has changed over the years with bios, drs are now using them sooner rather than later with people that has moderate disease. Someone with mild symptoms usually can usually avoid them. Everyone is so different, this is why the treatment should be tailored to the patient. I went 2 years of pure hell with various gi's before finally finding a dr that was up to speed on things. Without a bit of hesitation he put me on Remicade & Imuran. What a difference it made too. Now there are more options available thank goodness. As patients we cannot rely on a dr to give us the knowledge we need for treatment & the meds used.

I hope you can get things on track.
Posted 3/6/2018 10:43 PM (GMT 0)
Thank you Susie! Appreciate the good advice and you reaching out to me. Feeling better but just very tired. I just keep waiting for everything to level & balance out so I have more consecutive good days than bad. I’d like to be able to make & keep plans again instead of canceling due to feeling ill & out of control.

Thanks to all, peace & best wishes!
Posted 3/6/2018 10:56 PM (GMT 0)
Oh hey Susie. Forgot to ask about possible Humira side effect. My mouth is dry, gums & roof sore, sensitive to foods I’ve never had issue with before. Lips peel & crack excessively too. My Humira Nurse Ambassador said to tell Dr but he just blows me off when I tell him. It does seem Humira gives me short energy bursts so that is nice but wish it’d last longer. just hope none of the scary stuff like cancer happens.

Thank you.
Posted 3/6/2018 11:51 PM (GMT 0)
Hi Wildblue, I missed your story in the other post but just hunted it down, I agree with everything straydog has mentioned. Some of my experiences that may help you: I used to have trouble around the time I was getting off of steroids but I also found that when I did get off of them I felt better after a few days/ weeks. This however was deceiving for me because I would feel decent enough, worn out from all the doctor visits coupled with a complicated situation I put off finding the optimal mantinance med and the cycle continued. I was on humira for a few months until side effects became an issue. Now on remicade and 1/2 dose of 6mp to prevent antibodies to the remicade. Crohns is completely controlled but having some possible arthritis issues flaring that is being sorted out.it can be very difficult to find the right meds/ doses and can take awhile. Keep at it and if you don't feel like you are getting enough support from your doctors see if you can ge another opinion. I switched doctors several years ago (accidentally actually and it was the best accident ever) and while I've been waiting for two years for things to level out since I started the remicade (I Have more normal time than not except for the joints), having their support has made the whole thing bearable and took a huge weight off my shoulders. It's also really scary for everyone on these drugs so you need doctors you can turn to if you have concerns. Good luck!
Posted 3/7/2018 12:08 AM (GMT 0)
Thanks Lab for sharing your experiences and the good advice. I will give my doc credit for being honest about how it’s all a puzzle to see what any given person will respond to and how it’s always subject to change at any given moment without reason or cause. It’s so frustrating for both dr and patient. I became a really bad tempered woman taking steroids but getting off them has made me worse scared of myself at times. So starving all the time and get sick from eating too much too fast. I do feel out of control. Most people get energy from prednisone but I am tired most all the time. Just glad to find a place where people really understand, offer advice and share without judgement. I feel kinda normal on this site, lol. 😜
Posted 3/7/2018 12:55 AM (GMT 0)
It definitely is frustrating for both. My GI has been similarly honest. He once joked about how he wished we could install a door on me so he could open it up and look inside without having to order another test/procedure/scan. I had my pulmonary doctor bring up to me once how much back and forth there has to be when trying to control a flare. I was really happy he brought it up because I often feel like a burden when I'm constantly coming in with more issues that are difficult to solve, but he told me something to the effect of no, that's what happens when you have a disease like this and that there will be a time again when you don't have to focus on it or call like 20 times in a month lol. And I can say that he was right, just took a long time.
Some one once referred to steroids as the devils tic tacs and I have to say I've never heard a better name for them. They mess a lot up along the way. I used to have terrible heart palpitations with them and couldn't sleep for several days after starting them because it caused my heart rate to go down into the 30's and jolt me awake which always left me an emotional mess. I later found out I had a minor heart issue it was probably messing with. I would be super high emotionally in the beginning and then an all time low as I weened off.
Definitely a no judgement zone so share and ask away!smile
Posted 3/7/2018 1:39 PM (GMT 0)
I missed your questions about possible side effects from Humira. No, I did not ever have any of the symptoms you are having. I can't recall anyone else having this either. You can always check out their site to see if any patients ever complained of this. How long has this been going on & how long have you been on Humira? I think maybe I would go see my PCP about this to see if this is something else going on. It can be easy sometimes to think its one of our meds.

Take care.
Posted 3/7/2018 7:44 PM (GMT 0)
Omg Lab! 😂. Steroids = devils tic tacs!! Such a great anology along with Susie’s love/hate relationship comment. Yep, now I’m sure it’s not me or just me, it’s the med! Thanks again 4 the reassurance.
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