Quality of Life vs Side Effects vs Remission

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sparkleplenty
Veteran Member


Date Joined Nov 2010
Total Posts : 561
   Posted 9/27/2017 7:47 PM (GMT -6)   
I've been on Entyvio for about 13 months. I had a scope in June and for the first time since I was diagnosed there was no inflammation.

I'm starting to rack up a collection of side effects that could just be coincidence, but my instinct says this might all be related to Entyvio. It's really frustrating. I've had sinus issues, and will have a CT scan soon to rule that out. I've got a bone spur in my neck and have been dealing with a pinched nerve for this whole year. And I'm having recurring yeast infections.

How do you weigh the benefits of remission against a growing list of side effects?
Diagnosed w/Crohn's in 2005. Meds: synthroid, allergy meds, B-12 (liquid), probiotics, fish oil, turmeric, migraine meds prn, and vicodin prn. Gall bladder removed 8/15. Started Entyvio 8/5/16.

Have tried: sulfasalazine, asacol, entocort, imuran(allergic), humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia, pentasa, MTX & Arava for joint pain

beave
Veteran Member


Date Joined Mar 2007
Total Posts : 1615
   Posted 9/27/2017 11:57 PM (GMT -6)   
Sinus issues could be exacerbated by the Entyvio. Let us know what the CT scan shows. That can usually be dealt with successfully without requiring you stop the Entyvio.

The bone spur in your neck and the pinched nerve pain are probably not at all related to Entyvio.

The yeast infections may or may not be related to being on Entyvio.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1742
   Posted 9/28/2017 3:11 AM (GMT -6)   
I would have to agree. The bone spur isn't at all likely related to Entyvio. There is a laser surgery treatment for the removal now as well. Not sure about your sinus problems, but if you're having that much benefit from Entyvio, you would certainly want to stay the course. Hopefully, there are treatment options that can deal with your sinus problems.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1813
   Posted 9/28/2017 5:34 AM (GMT -6)   
I've been on it for about 18 months now and it would take something major for me to quit it. My last scope showed remission something I've been struggling to get to for the last 13 years.

I wouldn't jump to stop it until you have all the answers and facts on your sinus issue and see what your dr. says about way you get so many yeast infections.

good luck with the CT scan.
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15006
   Posted 9/28/2017 8:20 AM (GMT -6)   
Sorry you are having these issues. I have to agree with beave on the sinus situation. As far as the pinched nerve in your neck, I personally think this is something unrelated to the medication. I have a long standing history with both my neck & back problems. I have been dealing with a pinched nerve in my neck for several months now. The burning pain in my shoulder & arm has been something else. Recent CT showed many changes since my last scan. My PM dr suggested seeing a neurosurgeon which I declined, same as I did 20 yrs ago. I changed my bed pillow & started on Gabapentin which is helping with the burning.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

sparkleplenty
Veteran Member


Date Joined Nov 2010
Total Posts : 561
   Posted 9/28/2017 6:44 PM (GMT -6)   
Well the reason I think my neck is affected by Entyvio is because when I was on humira and it flared up it was equally hard to get relief, but stopped when I stopped humira. I had trouble a couple of years ago when I wasn't on any immunosuppressants and a few weeks of PT and it was fine again. I had 3 months of PT this spring, a cervical steroid injection and two in my shoulder and trapezius and I'm still having struggling to get it calmed down.

My GYN said on Wednesday that Entyvio could certainly be a factor. Once some lab results come back he'd know how he wanted to treat it.

It's enough right now for me to start weighing the pros and cons of Entyvio. I'm not going to make a rash decision; it's just on my mind.
Diagnosed w/Crohn's in 2005. Meds: synthroid, allergy meds, B-12 (liquid), probiotics, fish oil, turmeric, migraine meds prn, and vicodin prn. Gall bladder removed 8/15. Started Entyvio 8/5/16.

Have tried: sulfasalazine, asacol, entocort, imuran(allergic), humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia, pentasa, MTX & Arava for joint pain

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10565
   Posted 9/28/2017 6:58 PM (GMT -6)   
Let's look at some entyvio trial data.

www.entyviohcp.com said...
INFECTIONS

Infection rates with Entyvio were 0.85 per patient-year vs 0.7 for placebo
Infections consisted primarily of nasopharyngitis (common cold), upper respiratory tract infection, sinusitis, and urinary tract infection

/www.entyviohcp.com/safety-profile
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Taking the "oo" out of poo.
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