Side effects of budesonide and length of treatment?

brandy · Post by **brandy** » Thu Apr 26, 2012 5:40 pm

Hi Rae,

Bless you as I know you are struggling. I can't remember your history but if you are taking any other drugs you might want to post what you are taking as Tex is very good with that kind of stuff. You don't want to (unless it is life or death) take any other drugs that might be counter indicative to gut healing or switch to drugs that won't slow gut healing.

I kind of hate to post about the negatives because I think people on the internet are more likely to post negative things than positive things and many people are helped by Entocort and Astra Zenecas studies show only 10% had side effects. I was one of the side effect people. As a general rule as I lessened my dose the side effects lessened proportionally. I ended up going to work every day but there was a 6 week period when it was kind of rough. In a way work can be a blessing....i.e. it took my mind off of the side effects.

Now that I"m off of Entocort I have no lingering side effects....i.e. got off Entocort and side effects went away. The one real positive is that I know for me going on Entocort a 2nd time is not an option so I'm really focusing on diet and doing well at it.

Brandy

raemckee · Post by **raemckee** » Fri Apr 27, 2012 7:48 am

Thanks everyone. I really appreciate your help and support in trying to figure out the best treatment with the least side effects.

I got a call from my main GI Dr. today. He was unaware that Bismuth Subsalicylate could cause tinnitus. He is going to look into it now. I stopped using it. Day 3 of ringing and it's gotten worse.

I'm going to keep taking the 9 mgs. of budesonide in the morning. He isn't aware of anyone having abdominal pain from MC. He said we couldn't tell if the pain is a side effect until I go off the budesonide. I need to take it for at least 4 more weeks. He said we can't keep changing the medication or we won't be able to see what is working before that time frame.

He thinks I may have IBS as well as MC, possibly the result of a viral infection (one of my early bouts with diarrhea where my husband was ill too). He is prescribing an anti-depressant for that. I am assuming it will be a tricyclic type. He did say that it will take awhile to go into effect though. It is supposed to help with the pain as well as sleeping at night and slowing down the BM mobility.

The only other drug I am taking is 1 mcg Levothyroxine for hypothyroid and a once a week prescription shampoo for psoriasis.

Post by **tex** » Fri Apr 27, 2012 8:15 am

Rae,

FYI, as most members of this board can attest, pain is extremely common with MC - in fact, most people with MC experience significant abdominal pain with MC. You are dealing with a doctor who obviously has very little experience actually dealing with this disease. Doctors who believe that MC is not associated with pain are simply going by what they learned in the old textbooks describing the disease. IOW, they are naive and inexperienced.

"IBS" is a cruel hoax promoted by doctors to obscure the fact that they are unable to explain many GI issues that don't meet the criteria for formally-defined disease. IBS does not exist. IBS is a default diagnosis that stands for "I Be Stymied". Most cases of "IBS" are misdiagnosed MC or celiac disease. Others are early stages of those diseases, or in some cases, simply cases of CD and/or MC that are refractive to treatment. When a patient doesn't respond to the treatment that they prescribe, many GI docs try to convince the patient that she or he has "IBS", (which is supposed to explain why they do not respond to treatment). The fact of the matter is, the patient isn't responding to treatment because the doctor doesn't understand how to treat the disease. At any rate, "IBS" is a cruel joke - a disease that does not exist.

The problem is, as more and more doctors continue to repeat this lie, most of them are beginning to believe that it is a legitimate disease. There are even "official" descriptions of the "disease" beginning to show up on many mainstream medical websites.

Be careful with taking anti-depressants. Most of them have been proven to cause MC for some individuals. We have a number of members whose MC was originally caused by a prescription for an anti-depressant.

Tex

raemckee · Post by **raemckee** » Fri Apr 27, 2012 9:26 am

I mentioned that to him about being concerned about the anti-depressant and MC. I was surprised that the tinnitus, heartburn and abdominal pain were dismissed as unlikely side effects to the Bismuth subsalicylate and budesonide. They are widely reported and they have been a result of the treatment for me. I had the BM mobility pain and a pain in my left side early on but the abdominal pain, bloating and heartburn started with the budesonide and increased after 2 weeks on the medication. The tinnitus started after a week on the pepto bismol treatment.

Post by **tex** » Fri Apr 27, 2012 11:39 am

That timing of your symptoms is pretty strong evidence, IMO.

Your doc's attitude toward drug side effect is very typical. Virtually none of them are willing to admit that the drugs that they prescribe cause side effects. The manufacturers' labels suggest that such side effects are uncommon, (even though experience shows that they're much more common than claimed), so most doctors choose to assume that "uncommon" means "rare", and then they try to pretend that those side effects are actually rare, because they like to think that they wouldn't prescribe a drug that would cause adverse side effects. Unfortunately, there isn't a single drug available that doesn't cause side effects for some patients, so that's just wishful thinking.

Tex

Gloria · Post by **Gloria** » Fri Apr 27, 2012 1:06 pm

It blows my mind that a) your doctor thinks you have IBS and MC, and b) he thinks that an antidepressant is the solution. Tex is correct; your doctor doesn't know how to properly treat your MC. It infuriates me when they prescribe antidepressants, known triggers for it.

Gloria

Lesley · Post by **Lesley** » Fri Apr 27, 2012 1:45 pm

And I SO agree! My former doc, who diagnosed MC, also told me that if I had cramps and bloating I have IBS too! What rubbish!
I have significant pain with my MC, and a lot of discomfort too. I wish the doctors would open up their heads and LISTEN TO THE PATIENTS! What a novel idea!

raemckee · Post by **raemckee** » Wed May 02, 2012 12:27 pm

I am having a abdominal and pelvic CT scan to rule out other possibilities. I still have tinnitus from the pepto bismol that I took for 1 week. I stopped taking it for two days and talked to my GI. He then prescribed nortriptyline 25 mgs. at bedtime for the pain. I tried it once and it was easy to decide that it is not for me. He also recommened that I take (1) pepto bismol 3 x a day and continue the 9 mgs. of budesonide and hyoscyamine, as needed, also for the pain.

I wasn't able to tolerate the (1) pepto bismol 3 x a day either so my normans are gone and the leakage, and unusual volume and type of stools are back. I have been GF DF SF for almost 7 weeks. I've been taking the budesonide for 5 weeks. I have also avoided the other food reported in my Enterolab testing. Because the pepto bismol trial is over, I have started the liquid imodium as prescribed by my GI.

Today, my DH's boss (who has Celiac) told him I should eat fruit and boiled chicken for 6 weeks and then reintroduce anything but wheat, rye, barley and oats. He is a M.D. handing out 3rd party advice. I know he's trying to be helpful as is my DH. I do not tolerate drugs well and am doing the best I can on my restricted diet. I've gained 10 lbs. which I'd like to attribute to the steroid consumption. I'm attending my daughter's wedding shower this Saturday then vacation for 2 weeks starting on the 12th, another shower in June and the wedding in August, so of course along with making it through the work days, I am a little bit stressed about not having more emergencies.