UC medication other then Imuran?

I'll make this simple and to the point. I was on apriso 4 times a day and it wasn't working. My doctor put me on 40mg of steroids plus another 4weeks of taper down steroids and 2 tabs of imuran plus 4 apriso pills a day. To stop the flare up but after they did stool test i came positive for c-diff.

After the steroids and the imuran i have been having so much pain in my joints. I can't sleep at night cause my hips hurt so bad, my knee, my ankle hurt, even my shoulders i can't even touch behind my head. I've also been throwing up, nausea, fever like symptoms with chills. I know some of those are symptoms due to imuran. So i went today to discuss my issues and how i would like to come off of imuran to avoid further problems.
My doctor suggested me going back on steroids for my joint pains. I really want to avoid steroids unless i have bleeding again which i am struggling to even have a bowel movement now so a flare up isn't happening at the moment! Last time i was on it i gained 20 pounds can't fit my cloth and i really think that since i have been on steroids for a yr now on and off every other month. I think its taking a toll on my joints, muscles etc. There still pushing for more steroids!
They refused taking me off imuran but gave me an alternative to that and its humara.

So overall my point i was trying to tell my doctor was since they wanted me on steroids anyways why not try apriso out without the imuran being involved and if i have another flare up i can take apriso with the steroids they want me on and go back on imuran. I don't feel like apriso was properly scratched out cause i had c-diff and i feel that it was interfering with apriso.

My 2 questions are:

1. Could c-diff had been a possibility that it was affecting the job apriso was supposed to do? Maybe someone has had this experience

2. Is there a different medication for UC other then imuran? I read its horrible! Not saying all meds are safe but I'm scared to develop cancer cause of it. Not to mention i had oral surgery and imuran is affecting how i heal from it.

I like my doctor but i really feel like scratching out apriso in the right way now that i don't have c-diff then to stay on imuran or go to humara. I mean i have uc whats to loose anyways there gonna shove me back on steroids cause of joint pains :(
Any advice and opinions are really needed my doctor is hard headed and i felt like he didn't listen much to me at all. Just kept pushing me down the hallway to other meds

Post Edited (marlenevang) : 3/5/2014 12:22:43 PM (GMT-7)

I forgot what month i started steroids but its been since early 2013 like may time frame. On and off trying different medications.

im not sure how long I've had c-diff but i was on imuran since november after being on a taper steroids of 4weeks prior to imuran

They tested me in december after i went in 3 days in a row to get iv fluid with steroids and it didn't stop me having to run to the bathroom non stop and bleeding. That didn't help so they then did the stool test.

After the results they put me on medication for c-diff and my doctor put me on imuran and 40mg of steroids for a month. Then after i got done with the 40mg they had me start with another month of taper down steroids "prednison".

The steroids are causing your joint pain. It seems to me it would be stupid to take them for joint pain unless maybe you have RA and the steroids might help that. If you don't have RA then you were probably suffering steroid withdrawyl while tapering, which caused your joint pain and by putting you back on it your withdrawyl symptoms would probably go away. Unfortunately, taking steroids long term will cause more problems than it is worth. Steroids are a wonder drug short term and a nightmere long term. They will destroy your body. You should check out the resources thread at the top of the page to brush up on treatment options.

Imuran is usually not prescribed before 6mp for UC. It does take awhile to work, so they usually add it before or during the Pred taper. Agree that Pred is probably to blame for joint pain.
Is the CDiff clear? There are many 5ASA's can can work for you, but it depends on where your inflammation is to advise on what works best.
Also, Remicade is usually the biologic selected first before Humeria, so check that out with your doctor. Lots of good info on this site.

Some of your story is a bit confusing. Generally, a Gastroenterologist will some form of endoscope based exam to determine how your uc is doing. Colonoscopies can be done to examine the entire large intestine. Flexible-endoscopes can be used in-office to examine the rectum and the sigmoid colon. Based on the finding of such an exam, he/she would recommend you go on a stronger medication. Ulcerative colitis is an auto-immune disorder, where the immune system attacks the lining of your large intestine, and that causes inflammation, ulceration, bleeding, urgency and so forth. There are generally three classes of treatment options:

The first line of treatment for those with mild to moderate uc is anti-inflammatory medications. These are meslmaine based drugs and they are usually given in both oral, pill form (e.g., Apriso, Lialda, Asacol HD, etc.) and also in rectal form as either a suppository (e.g., Canasa) or an enema (e.g., Rowasa). For some this class of medication is all that is needed to keep uc under control and symptoms manageable.

The second line of treatment is immunosuppressive medications (e.g., Imuran, 6mp, or Aza). This is usually added to the first line of treatment. If the immune system is knocked down a couple notches, then less inflammation is caused in the first place, so the combination of these two classes of medication are enough to keep symptoms in control and the disease at bay.

The third line of treatment is biologic medications (e.g., Remicade, Humira, or Simponi). These medications are often reserved for those with more extensive and severe uc. Or for those who are non-responsive to the lower classes of treatment. Usually classes two and three of treatment are combined to keep symptoms at bay, and the disease under control.

Prednisone is a medication used to treat flareups of uc. It is a temporary solution used to quickly get symptoms back under control. It is not meant for longterm usage and any Gastroenterologist should know this. Are you being treated by a Gastroenterologist?

You are always welcome to get a second opinion from another Gastroenterologist.

Treatment is always based on the amount of and the severity of your active ulcerative colitis disease. All of GI's will say the same thing, if you are inflammed when they scope you, and your current medications are not working well enough then you must change your medications around. That could mean adding rectal meds (if you are not already on them), increasing the dosage of your oral meslamine. Apriso has a lower maximum dosage, then other oral meslamine-based drugs. Lialda, Asacol HD, and others may be prescribed up to 4,800 mgs a day. The rectal medications are up to 4,000mgs of meslamine a day.

If that amount of meslamine isn't enough to keep your symptoms at bay, then you will have to go on to the hardercore medications. That normally means some form of immunosuppressive medication (Imuran, 6mp, Aza) and those medications can take 2-3 months to build up to a therapeutic level in your body. The other option is biologics which work much quicker, usually within a few weeks. A GI may skip over immunosuppressive meds and move you right to biologics if you are really bad off (lots of inflammation, severe and extensive) as they do work quicker and that is sometimes a factor. Generally, Remicade has both the longest tract record and appears to have the best results for treating patients with uc, so it is usually the first biologic med tried. Simpoini appears to be the 2nd best, and Humira the 3rd best option.

In all cases, the benefit of the drugs far outweighs the risk of taking them. Don't be hesitant to move on to the next drug, as doing so will only mean suffering with more symptoms, and you will have a lower quality of life because of your hesitation.

Marlene,

you said: I sorta fell like I'm being forced into meds by my doctor. He's a bit aggressive and i don't feel like we have really scratched out other methods before taking on serious meds :(
Not only that but they don't seem to really listen to me at all!

Yes, it's sad but many doctor unfortunately use a type of blackmail to get you to try the big guns.
Mine did too. He told me I had 2 choices: surgery or remicade, and I said NO to both. And if I hadn't,
I doubt I would be in remission now. So,the bottom line is you have to get a doc to listen to your concerns.

@ipoop
Thanks for all the information! Im going to ask him on tuesday. Right now I'm on apriso 4tabs and imuran 2 tabs daily. I was supposed to start steroids again because he's blaming my joints hurting on UC but i've decided to not do steroids at the moment. Bottom line is I'm not having a flare up, I'm not running to the toilet 3-5 times a day and i don't have bloody bowl movements. I could be stubborn but i disagree on the steroids and if it works ill pat myself on the back if i fail because i don't take them then lesson learned!
I never tried retail meds or lialda. Is Aza a immune suppresser along with Rimicade? I'll ask him about that and see if he even listens but you guys seem to know more and willing to explain to me information.

@insofla & @soystud
Thanks for the support! I already have a doctor lined up in case tuesday goes epically horrible with my doctor now. My biggest issue is i don't feel like I'm being really informed of what options i have. Instead being scared into what his ideals are. I know I'm no doctor but i think we should all have choices. I already have my own parents i have to visit on the holidays :)

@ipoop
The remicade is it a shot or pills? The nurse said its a iv drip and if so how long of one? and how often?

@ipoop
yeah i would do remicade before giving myself shots!
Thanks so much for all the information. I feel more educated by being on this forum then going to my doctors office :(

@colita
sorry about the late response
The anxiety is diff something I'm having bad after imuran, I was even on xanax for it! My doctor didn't want me on xanax so they tried 3 different meds for anxiety last one was klonopin which didn't work. Then they decided to put me back on xanax but by then my body grew a immune to all these anxiety meds that xanax didn't work like before :( As of now my phyc is trying other meds. I guess its a work in progress i did realize when i was first on xanax before the experiments and change in meds for anxiety i diff noticed a change specially with my uc and stress level and anxiety.

As for my uc meds i was on Asacol and i was taking 4tabs before i got changed to 4tabs of apriso then i got changed to 4 tabs of apriso and 2 tabs of imuran :(
Never thought of enemas tho I'm gonna look into that!!

Not sure if that was mentioned but after Imuran and 6mp there is also MTX. That's what I got before going on biologicals.

Thanks InSoFla- my Vit D level was a bit low so I am going to get on replacement