Scared of taking the new meds

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

flufumps
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/9/2009 3:07 PM (GMT -6)   
Hi I'm new here,
 
I started having problems last August, had a sigmoidoscopy last November and finally got diagnosed in February with proctitis, got put on mezavant and ended up hospitalised not long after though as i'd gone from 3-4 toilet trips a day to 12! I was in hospital for 5 days whilst they tried to get it under control, they moved me off mezavant and on to asacol which seemed to have the same effect so they ended up putting me on prednisolone and once things had started to improve sent me home to await a full colonoscopy when it had settled a bit.
 
Had the full colonoscopy in May and it turns out i actually have pancolitis (which left me very confused as to how they thought it was just proctitis alone in the first place).
 
They decided to try me on another 5asa (pentasa) to hope i didn't react to this one, lasted 3 days on it before i was back to having 8/9 toilet trips a day so i took myself off it as with 3 young children i really didn't want to be hospitalised again. After discussing at length with my consultant it has been decided that for whatever reason i can't tolerate mesalazine so the next option is to try azathioprin (125mg to start?).
 
Now after being told i need blood tests weekly for the first 8 weeks to check my white blood cell count doesn't drop so low it could end up killing me if i got an infection that scared me enough but now after reading the leaflet and all the side effects and things i can't take with it i'm actually terrified of starting it!
 
I do not want to end up feeling worse than i already do with the u/c, i've had them for 2 days now and am still putting off taking them. Are they really as bad as the leaflet says they could be? Does anyone know other options i might have now mesalazine is definately a no?
 
I asked my gastro nurse what if these don't work and she wouldn't commit to an answer, all i got was well we will discuss that if it happens...
 
Sorry i've gone on for so long x

Post Edited (flufumps) : 7/9/2009 2:11:49 PM (GMT-6)


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 7/9/2009 3:37 PM (GMT -6)   
{{{{Hugs}}}} Welcome and sorry you had to find your way here.

As a mother of two kids with UC and having to make the decision to put my children on the types of drugs you are referring to, I totally understand what you are going through!

I will tell you that Aza/6mp have been around for a long time now and are used in patients who have organ transplants at MUCH higher doses than IBD patients take. My now 17 year old and now 10 year old started these meds back when they were 15 and 8 and they have done VERY well on them - both got nearly 2 years of remission with very few "blips" along the way. They have not had any more cold/flu bugs than my child who does not take any meds. They get their bloodwork done regularly and it always turns out within normal.

It was very hard for me to make the decision - I cried buckets thinking "what am I doing to my kids", I am doing what their doctor recommends, because really what are the options - they are NOT ready to have their colons removed.

They have both recently flared - we have adjusted their meds - including upping their aza/6mp and both are headed back to happy and healthy kiddos.

CCFA.org has a link to a webcast from a doctor called "Balancing the Risks and Benefits of Treatment" that might help put your mind at ease. I haven't watched it yet, but have heard from other parents of kiddos on these drugs that I really helps put it all in perspective. http://www.rmei.com/CCFA139VL/

Good luck on what you decide!
Julie

Mom of Son 17 UC dx 07/02, Prednisone 20mg, Lailda 2 am & 2 pm, Azasan 100mg, Cortafoam (when flaring), folic acid, L. Reuteri, Culturelle, Zyrtec, Iron, Vit/Min

Daughter 10 UC dx 08/07 Prednisone 10mg am, Colazal 750mg x 4, 6MP 25mg, Iron, Vit/Min., Culturelle


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 7/9/2009 5:01 PM (GMT -6)   
Ugh, those leaflets have to list every single thing that anyone ever experienced while in the drug study, whether it was related to the disease or the drug at all. Please don't be too alarmed by it.
You need to find a treatment that works for you, how will you know what that is if you don't try them? The webcast sounds like a good one, I hope it helps.

As for the diagnosis, I expect proctitis can advance into pancolitis (which just means it has "spread" to your whole colon). So they might have been right about it.

You might reconsider next time whether you really need to go into the hospital or not. I would not for 12x/day, that's really not so bad and you can get that under control with the same drugs taken at home.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol maintenance for 20+ years; used prednisone & Rowasa for flares.  Probiotics (Ultimate Flora, 50 billion), salmon oil (omega-3) when I can remember. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet.
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ learning what normal is~ wow


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 7/9/2009 5:20 PM (GMT -6)   
I'm on 125mg and so far I've been fine. I've heard about headaches after being in the sun but I don't get that. I'd go for it if there aren't any other realistic options. It worked/works great for me. Good luck!
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15
2.5 tabs of Azathioprine 1xday / 1 Mesalamine enema nightly
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


AMK77
Veteran Member


Date Joined Mar 2008
Total Posts : 678
   Posted 7/9/2009 6:12 PM (GMT -6)   
Our stories are similar. I have pancolitis and cannot tolerate mesalamine and have 2 little ones at home. My GI was pushing 6mp. I'm trying natural supplements through a doctor that does Nutrition Response Testing. So far so good. I'm scared to take anything that suppresses the immune system, I would almost rather get my colon out. Guess I'll cross that bridge when I get there.
32 yr old female
Mild Pancolitis
UC since 2000 - in remission for most of those 8 years med free.
Cannot tolerate mesalamine. Currently take probiotics and fish oil. Trying Applied Kinesiology & supplements.


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2012
   Posted 7/9/2009 6:19 PM (GMT -6)   
Before I got UC I never ever got sick.When I did, it was horrible. Now on immune suppressants, I think I get sick just as often as any normal person. It's prolly differen't for everyone though.
19yr old female
Diagnosed with UC (pancolitis) in 2005 at age 15
2.5 tabs of Azathioprine 1xday / 1 Mesalamine enema nightly
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome


flufumps
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/10/2009 4:36 PM (GMT -6)   
Thanks for the replies, I guess if i don't take it i will never know, i think just after the 3 we have already tried i'm just assuming nothings going to work and i don't like what the azathioprine could do to me but on the the other hand like some of you have said some people don't get side effects at all.

I still haven't started them, i think i'm going to wait until i've finished my eye drops as the pharmacist said she couldn't be certain they'd be ok with them even though they probably would be i don't want to risk it.

Peety - with the hospital trip, if i could have got away with it believe me i would, i begged them not to keep me in as i ended up missing a concert i'd been looking forward to for ages! But i also have a blood clotting disorder so at the first sign of dehydration i have to go in to prevent another DVT or PE. I had no drugs here i could control it with at the time.

Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/14/2009 12:45 PM (GMT -6)   
I've been on azathioprine for 6 months now. I've had a few blips here and there, but that was while I was trying to take fewer Lialda. Each of the blips went away within less than 2 days, and I think I'm getting closer to remission. I can actually eat now and not have to worry about it coming out in 15 minutes. Just try the azathioprine. If it doesn't work, that's just one more drug you can add to the list of 'been there, done that, not going back.'
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Taking Lialda 3x a day<---NOT ANYMORE. I got pancreatitis from them.
I stopped taking Lialda 8-19-08. Ugh!
All I take now is just my 3 Entocort in the morning, and 1 iron pill in the afternoon.

NOW back on Lialda as of 8-30-08, not the cause of pancreatitis.
Going in for an endoscopic ultrasound on 9-19-08 to check things out.
Still on Entocort and iron. Yay...

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
Taking Caltrate, Iron, and B12. I still take one Lialda a day.. Don't know why..
Something is giving me horrible headaches. =[ At least I'm off the Entocort.

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, September 20, 2018 10:57 PM (GMT -6)
There are a total of 3,005,324 posts in 329,216 threads.
View Active Threads


Who's Online
This forum has 161770 registered members. Please welcome our newest member, jev44405.
261 Guest(s), 5 Registered Member(s) are currently online.  Details
Honeyeyes41102, thesuneone, valli1234, savena, mufjem