Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Hi everyone, I'm back with more wonderful questions
I have being doing pretty well with controlling my MC symptoms. Currently I take 3mg of Entocort every 4 days. Also I take an allergy free pro biotic, Cholestyramine once a day and 2 Pepto tablets every night before bed. I typically have 1 norman a day sometimes two (sorry if tmi). Stress always plays a huge part with my D, I wish I could control that more but overall I would say I'm doing well. My boyfriend, son and I even went on vacation to the Omaha Zoo this past week and I had no problems at all.
But the day prior to leaving for vacation when I was at work I was just standing doing my job and all of a sudden the room spun around me and I got extremely dizzy and I couldn't get the feeling to fade. So my doctor had me come in right away. She asked me a series of questions and performed a few balance tests. She noticed a jump in my eyes and the balance tests made my dizziness worse. For about a month now I had been noticing feeling slightly dizzy, a slight ringing in my ear on and off and also I have a slight hand tremor off and on (I read on post on here that hand tremors can be a side effect of the Entocort). She prescribed me prescription strength Dramamine but said it probably wouldn't help because she thinks I could possibly have Merieners Disease or another nerve related problem. She gave me a recommendation for and ENT doctor and also set up an appt for me to get an MRI. MRI appt on August 12th. I have yet to set up for the ENT doc. I started the Entocort/Pepto regimen back in March I think. I read online that prolonged use of Pepto can cause the ringing in the ear (But I really don't take that much).
So finally my question is - Is it possible for the Entocort to cause these side effects? I am really scared of having to live with these symptoms for the rest of my life and the possibilities of what will come up on the MRI so I almost hope its a side effect of the steroid.
Any answers will be greatly appreciated. Thank you.
I'm sorry that you're having these problems as part of your treatment. This is just my opinion (and I'm not a doctor), but some people are much more sensitive to bismuth subsalicylate than others, so if I were in your shoes, I would stop the Pepto, to see if that stops the ringing in your ears. If tinnitus is allowed to continue too long, it can become permanent, and there have been some cases where bismuth-induced tinnitus was apparently permanent right off the bat.
That said, it's also possible that the Entocort (budesonide) could be causing those symptoms, because many other members here cannot tolerate budesonide because of neurological symptoms such as the ones you've described. Dizziness and balance issues are very common reasons why many members here have discontinued using budesonide.
Please keep in mind that doctors in general are loathe to blame patient symptoms on any of the drugs that they have prescribed. Since drugs are their only means of treatment (because most doctors don't believe in making diet changes to treat digestive system diseases), they try to ignore the risks of adverse side effects, and tend to play them down. They much prefer to diagnose another disease and prescribe additional drugs to treat it.
I hope you can track down the problem, because dizziness is a very debilitating symptom.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Jesse's mom, did this happen on the day that you took your Entocort? The reason I ask is that since I've been off of Entocort for a year+ I have, on a couple of occasions, taken one or two if I felt I had some inflammation, just to see if it helped. What I noticed is that somewhere around 3-4 hours after I take it, I get lightheaded all at once, like a real head rush. When it hits, it's obvious. It fades after another hour or so. Since you only take it once every 4 days I wondered if this was the same effect I had.
I did not take Pepto regularly but like Tex said, I've also heard others say they get ringing in their ears.
Good luck sorting it out. I hated the dizziness as much as the nausea when I was at my sickest.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
I've been off entocort for about a month now and was previously taking it since February of 2012. I experienced mild light headedness while taking it but nothing I would call bothersome. I have, however, had an increase in problems with equilibrium/dizziness since I've been off. This may be a coincidence and doesn't offer much help for your question. I hope you are able to pinpoint the cause soon. It's a hard feeling to cope with when you're trying to just get through the day.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Ah, good to know Deb. Have my first appointment with my endo this Friday. The month wait is killing me. I've been thinking how to best present my symptoms because there are so many of them for such a long period of time. I think in the past my long list of complaints have caused doctors to brush me off with such dx as depression, fibromyalgia, chronic pain syndrome, and just plain nuts. All which offer no relief for my real problems and only open the door to more drugs that will just cause more side effects and not address the root cause of my health problems. I've rejected all offers for additional meds which hasn't gone over so well. I've actually switched medical facilities in hopes of finding a doc who is willing to listen to me. I think I may have found one thus the referral. I will know after Friday if they will be willing to treat my thyroid. I have to strategically order my complaints so its not too overwhelming.
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
I am glad I am not alone in these symptoms at least. In the month prior when it was only the slight dizziness I rode it out thinking it was a side effect of the meds. But if it is going to be this bad I cannot handle it. Today was my first day back to work since vacation and I barely made it through the day and it was only a 6 hour shift. I wanted to cry the vertigo feeling was so bad.
Our daycare situation for our 4 y/o recently changed and due to the rising cost my boyfriend have decided that it makes more since for me to stay home with him than it does for me to continue working full time and giving virtually my whole pay check to the daycare. So August 11th is my last full day and after that I will only work weekends as part time. So depending on what the ENT Dr and my MRI show and barring its Merieners Disease or another nerve related problem I think I will start to wean my self off the Entocort and Pepto since I will home most of the time in case it doesn't go well and I get sick again. I have no idea how I am going to make it through the next few weeks of work though. Just thinking about it makes my stomach churn.
@Tex, I am not looking forward to seeing anymore specialists. I still have a $2,000+ bill that is now in collection from the colonoscopy and the GI. I am just afraid to not get the MRI if there is maybe something really wrong
@Carol, I'm not sure if I had taken the Entocort that day but I am thinking I did not. I agree with what you said about the nausea - I had gotten a handle on that too but now that I have all this dizziness it causes the nausea to come back full swing.
@DebE, the getting through the day thing is my biggest fear now. I have no idea how I am going to make it through work as I have a job where I am on my feet all day long.
I am just scared. I had finally been doing well with handling my MC and it turns out that my methods of controlling it could be causing another problem too. Or the possibility that all these symptoms are related to another disease that is not curable only treatable just like MC. I am so frustrated and stressed over what this actually is.
I had similar issues when taking Entocort and could not handle the side effects so stopped it. Still get vertigo every now and then but not at all like when I was on the Entocort.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
How long have you been on Entocort? It sounds like GI wise you are doing pretty well. I got off at 4.5 months as I could no longer stand the dizzyness. I was on 1 pill very four days and I came to one day when I just could not stand the dizzyness any longer. I had the pill in the hand and it was like today is the day. I had a lot of side effects from Entocort. None were permanent. For three weeks after the last pill I still felt lousy but then my mind cleared. We have small amounts of Entocort in our system for up to 8 weeks after last pill.
If you are not too sure about getting off of entocort you could always stay on the 4 day cycle for another week or two and do 1/2 pills. Pull pills apart, pour out half and put back together. I did not do this as I was not aware that this was an option.
One thing you have going for you is your youth. It stands to reason that a younger person will heal much faster than someone older.
If you feel comfortable with the diet, have good GI results, it may be time to put Entocort behind you.
Jessie's mom,
Does taking meclizine help you? I took the over the counter version sold as Bonine. It says it helps with dizziness as well as nausea. It's marketed for motion sickness. I found it to be more effective for the nausea than my prescription Zofran. On days that I was slightly dizzy I felt it helped.
Isn't the anxiety just about the worst symptom of all, on some days? It complicates everything.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
