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linahawk
Regular Member


Date Joined Dec 2009
Total Posts : 94
   Posted 11/18/2012 12:06 AM (GMT -6)   
hello , i havnt been on here for a while
just wanted to see if anyone is on the vedolizumab trial

i will have my 4th vedolizumab infusion this month
so far it has not worked for me
atm im suffering bad nausea and headaches and fever

at first i was on pred and it was giving me really bad constipation, the doctors at first thought the constipation was a sign of the drug working and healing me, but i told them i didnt think the constipation was from healing but from the pred..they didnt listen to me and got me to tapper off pred.
now im off pred i have no constipation and back running to the toilet 15 times a day.

now they want to put me on immuran with vedolizumab. i asked them if they put me on immuran how will tjey know which drug is working if i get better, and they said they wouldnt know..

im not happy they wanna put me on 2 immune suppressant drugs. and i told them that but they keep trying to scare me and keep saying if you dont go on it your going to get cancer and have your bowels removed!

MaxMilian
Veteran Member


Date Joined Dec 2010
Total Posts : 1224
   Posted 11/18/2012 3:25 AM (GMT -6)   
That's silly. You are the master of your own body. Stand firm. If you don't think the trial drug will work for you, stop it and go on to Imuran. Doctors don't care about what drugs they put into your body. After all, their business with you ends after their 30min consultation with you.
Oct 10: DX proctitis
Nov 10: DX IBS and cecum inflammation
Aug 12: DX Crohns? (mild ulcers on ileum)
STATUS: Ulcers on terminal ileum. Everything else clear.
1g Pentasa supp (1 per 2 nights) + 2x1.5g Salofalk granules daily. Low FODMAP diet.

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2765
   Posted 11/18/2012 5:12 AM (GMT -6)   
Well said, MaxMilian- one must always remember it is YOUR body and YOU are the one who must live with their advice- Never forget it, and if you don't like the choices they offer you, fire them and find a new doc (well, find a new doc first then fire them, ideally, lol).
"In order to save the village organ, we had to destroy remove it" -- Doctor's Prescriber's proverb.

garylouisville
Veteran Member


Date Joined Aug 2012
Total Posts : 6594
   Posted 11/18/2012 9:35 AM (GMT -6)   
I have to ditto that. You have to realize that the doctors really don't know anything about UC. If they were such experts they could treat us and we would be cured or in remission and that would be that. They aren't really doctors, they are just guessers and guessing is nothing more than just guessing. It's easy for them to just guess because they aren't the ones suffering. We are the ones who have to live with the consequences of their guesses so we should be involved in the decision making process. You have to look at it like you are the boss. They get paid either by your insurance that you pay for or by you personally.
Asacol 400mgs 2 pillsX4; VSL#3 112.5mgs 2 pillsX4; DGL 400mgs 2 pillsX3; Monolaurin 300mgs 2 pillsX3; Vitamin D 5000 ius 1 pillX2, Thorne SF722 10pills/day, garlic 3 pills/day

Discontinued: Prescription - Glycopyrrolate; Natural - peppermint oil, Inflaguard (Boswellia), Pepto Bismol, Omega 3 fish oil, Imodium, Beano, Zymactive, Renew Life Probiotic 80 billion, Florastor, Slippery Elm

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1007
   Posted 11/18/2012 11:34 AM (GMT -6)   
I am bummed that this drug is not working for you. I have heard great things about it and was hoping it would be the next great thing! Hope you feel better....fast.
diagnosed with left-sided UC in 1997. (45cm)

10caps Colazal

1 rowasa enemas nightly
magnesium citrate, calcium, VSL#3DS, tumeric, multivitamin

39, female

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10317
   Posted 11/18/2012 11:51 AM (GMT -6)   
I am sorry to hear it's not working better for you. I wonder if you could get off the biologic if you started Imuran? Many people have luck with Imuran alone. I opted for 6mp over Remicade and I've been doing well!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1263
   Posted 11/18/2012 3:33 PM (GMT -6)   
Can you take 6mp with Humira? Never heard of anyone doing that combo.
I also heard good things about that trial! Too bad I was keeping an eye on that one.
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS Half packet 450 billion
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u.
Dicyclomine 20mg as needed
Clonazepam 0.5m
Humira started June 2012

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 10317
   Posted 11/18/2012 3:39 PM (GMT -6)   
My GI told me that I could stop 6mp if I took Humira. I think it's taken with Remicade, in many cases, to keep the body from creating antibodies to Remicade. Snice Humira is made with human proteins, you shouldn't have to worry about your body creating antibodies and it becoming ineffective. I would think you can take 6mp with Humira but it's not as necessary as it is with Remicade. I would imagine if you went to the Crohn's board, you would find people on both Humira & 6mp. There may even be some people here.

www.healingwell.com/community/default.aspx?f=38&m=2317637
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: 6mp (25mg) + Lialda (2400mg) + Canasa (1g PM)

Faithmac
Veteran Member


Date Joined Apr 2008
Total Posts : 1263
   Posted 11/18/2012 3:45 PM (GMT -6)   
Yup read it. I guess you can. Just in case they don't appove the Humira for weekly use. Wanted to know if there was any options. Thanks!
Faith
Female ,US, LMT
Balsalazide 750MG 3- 3x daily
Canasa supp, Mesalamine enema
VSL#3 DS Half packet 450 billion
Armour Thyroid 60MG
Bio-identical compounded hormones,DHEA 10mg
Vit D 5000 i.u.
Dicyclomine 20mg as needed
Clonazepam 0.5m
Humira started June 2012

linahawk
Regular Member


Date Joined Dec 2009
Total Posts : 94
   Posted 11/18/2012 7:49 PM (GMT -6)   
Well For the last 2 days iv been having a fever and extreme stomach pain and nuasea , so call the head dr of the trial on his personal mobile phone.. Told him what going through, first thing he asked was if I had a uti!?!?!? He didn't tell me what I should do for my fever , actually he didn't suggest anything but promised me he would get the trial drug nurse to call me that same day or today.. And well I cAlled the nurse today and the dr didn't tell her about me! I'm pissed off cos I'm on a trial drug and I'm not feeling well and they are not taking my symptoms
Seriously... I tell the nurse I'm pissed off and thinking about coming off the drug cos there is no support and the drug is not working and she gave me the same spill of getting cancer!!
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