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Ulcerative Colitis
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Posted 10/14/2013 6:51 PM (GMT 0)
So after a terrible bout of proctitis for the last 4-5 weeks, I'm being taken off Humira and moved to Simponi as soon as it gets approved.  I know I am running out of treatment options and I'm hoping if this one does not work that I can hold out for Vedolizumab next year.  I've just re-started Paleo/SCD too and hopefully that will help me out too. 

Is anyone else on Simponi?  What are your experiences so far?  I am the first person in my Dr's practice to take it for UC so I feel a bit like a pioneer.  Not sure if that is a good thing....

Posted 10/14/2013 7:16 PM (GMT 0)
I am in the same boat as you, Indycat! It was just approved in Canada for UC at the end of September, so not many people here have been on it. Fingers crossed that it works (and gets approved!)...it's my last hope before surgery. Looking forward to hearing experiences on Simponi as well, and that you are able to find relief from it too!
Posted 10/16/2013 1:46 PM (GMT 0)
Jets_99-
Good luck with the insurance approval! I have my fingers crossed that I will receive my shipment this week. Hopefully I will be reporting back that it is working too!!
Posted 10/16/2013 2:02 PM (GMT 0)
I've heard good things about Vedolizumab. Haven't heard much about Simponi - is this the drug that used to be called tysbari? I also saw some people here discussing xeljanz the other day. I am not too familiar with any of these, nor do i know the differences but I hope you have luck with simponi. Please let me know how it goes for you.
Posted 10/16/2013 3:24 PM (GMT 0)
Simponi is another RA drug that was recently approved. Works in a similar way to Remicade, Humira, etc. Xeljanz is a RA drug too that looks like it will be approved for UC. Xeljanz is a pill which is a lot better than sitting for an infusion or giving an injection.

I'm excited about Vedolizumab because it is colon specific and might not expose people to the side effects that system drugs like Humira, Remicade, Simponi do.
Posted 10/16/2013 4:37 PM (GMT 0)
I just had all the testing done for Simponi and I'm waiting on the insurance company. Scheduling my training session for the injections later in the week. Hoping it works for me. I've been in a crazy flare for 14 weeks - Prednisone didn't work and I've tried all the ASAs. I can not hold rectal meds right now as the flare is so bad. I probably should be in the hospital, but I'm fighting the fight.
Posted 10/16/2013 5:33 PM (GMT 0)
Scrappiest-hang in there! Hopefully Simponi will give you some relief? Are you getting auto-injectors or syringes?
Posted 10/16/2013 5:35 PM (GMT 0)
NSSG, tysabri (natalizumab) is a different drug than simponi (golimumab).

indy, i'm right behind you. going to see my doctor next week to get the simponi ball rolling. hope it doesn't hurt like humira does. i know these pens come in two sizes- 50 ml and 100 ml so depending on how many shots you want to do, you can do 4 when you start, or 2. i would rather do 2 and then go to the 1 shot per month (100ml). no chance in hell that i'm getting the injector pens again. i'm using syringes.
Posted 10/16/2013 6:40 PM (GMT 0)
I have used it with the syringes, they are the smallest needles that I have ever scene, they do not hurt at all but are a little difficult to do because they want them subcutaneous as injections.

Simponi worked well for me (Started it in June and stopped in August) at first but then I may have gotten a bacteria infection that might have caused Simponi to fail for me.... but I really did not give it a chance because I was just using Simponi to get to me to surgery this Fall (which I am going for very soon). GI had me stop it because he put me on Pred and some Anti-biotics for the infection. He didn't want me on 2 immuno-suppressants at the same time.

Simponi is manufactured by the same company that produces Remicade, it is the sister drug to Remicade with some of the mechanisms as Recmicade.

Tysabri is an MS drug that works really well for IBDs but has a black-box warning on it because it can cause a fatal brain infection in 1% of the users of Tysabri... they can test a head of time to see if you are at Risk for the infection. My GI offered it to me but I declined; he said that they use it for people who refuse surgery and Cyclosporine doesn't work.
Posted 10/16/2013 7:41 PM (GMT 0)
Banana-I've read in some RA groups that the Simponi syringes are so small that you can't really feel them. I'm too chicken to do the syringes and would rather do the autoinjector even though it might hurt a little bit. I just can't give myself an injection with the syringe. Good luck with your Doc! I hope this drug is the one for us!!
Posted 10/17/2013 2:42 AM (GMT 0)
Good luck all!! Looking forward to hearing how it goes! Fingers crossed that Simponi works :)
Posted 10/17/2013 2:46 AM (GMT 0)
Why don't more people try the xeljenz? Sounds like that is very convenient and painless. Is it less effective? Tysbari scares me because of the PML risk.
Posted 10/17/2013 11:43 AM (GMT 0)
The insurance company approved yesterday. I am going on Friday for the training session and first dose. Not sure if it will be the syringes or the auto injector. Honestly, I just want to get started I don't care either way! Then I should get the medicine in the mail for the 14 day second dose.
Posted 10/17/2013 5:22 PM (GMT 0)
Scrappiest-Good luck with your loading dose. Keep us updated on how it's working.

I just got the word from my insurance company that they approved Simponi. Thank God! I'm suffering and can't wait to get going on this.

Notsosicklygirl-I don't believe xeljanz is approved for UC yet. You would have to get your Dr to prescribe off-label for UC.
Posted 10/22/2013 1:36 AM (GMT 0)

Update - Starting Simponi at the end of the week! Fingers crossed that this is the "one"!! I feel very fortunate and lucky - it was declined, but the drug company is going to subsidize it for me until it becomes approved.

Also went to a nutrition store to pick up probiotics that were recommended and the owner of the store also convinced me to buy the following...

- DDS Ultra L. acidophilus DDS-1, B. longum, B. Bifidum, B. Lactis w/ FOS, 10 billion... (I was going to get DDS Plus, but he told me to get the Ultra)

- NutraSea hp - extra strength EPA 0mega-3 supplement (ie. fish oil - Canadian brand: EPA 1500 mg and DHA 500 mg)

- IntestiNew by Renew Life

At this point, I am willing to try anything. I've been on prednisone for over 2 weeks (40 mg) and am still not feeling great. Does anyone have experience with any of the above?? I'm hoping that the prednisone, simponi at the end of the week and the above will help me achieve remission! Been flaring since February, and ready to be normal again!

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