Hi all,
Well, now it's like I never took the Entocort or watched what I eat. I woke up at 4 am today so I could leave the house by 7 am, I needed every minute of it. The D is back big time and I really don't feel well. There is some stress in my house, maybe that's to blame. I guess I have to go back to where I started at 3 pills per day. I'll keep you posted. Thanks for listening.
Susanne
tapering off Entocort and there's problems
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Hi Susanne,
I'm sorry that the treatment is not working very well. The added stress could certainly be a big part of the problem.
You're correct, most members in that situation find that they get much faster and more effective control if they go back to 9 mg per day for a while.
Good luck with the treatment.
Tex
I'm sorry that the treatment is not working very well. The added stress could certainly be a big part of the problem.
You're correct, most members in that situation find that they get much faster and more effective control if they go back to 9 mg per day for a while.
Good luck with the treatment.
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.
Hi all,
After 1 week back on 6 mg. of Entocort a day, the D is still wreaking havoc. I am no better. Today, I started back on 9 mg. a day, I hope it helps. I don't understand, I started taking generic Entocort in May, 9 mg a day and I dropped down from 9 mg to 6 mg when I started to get C, then from 6 mg to 3 mg when the C started again and then after being on 3mg after about a month the Dr. started tapering me because I was severely constipated and now-back to the nightmare. I watch my diet very carefully, granted I probably screwed up at the wedding and bridal showers I went to. I am 5" 6" and I have lost weight, down to 98 lbs. I have cut out chicken that I ate daily trying to see if I would help, so far it hasn't.
The arthritis in my hands is back big time, the oral lichen planus never got better, however the small patch of eczema is getting better. I still have that pain on my left side, waist high, it comes and goes but it is not a crippling pain, just there.
I needed to vent, thanks for listening,
Susanne
After 1 week back on 6 mg. of Entocort a day, the D is still wreaking havoc. I am no better. Today, I started back on 9 mg. a day, I hope it helps. I don't understand, I started taking generic Entocort in May, 9 mg a day and I dropped down from 9 mg to 6 mg when I started to get C, then from 6 mg to 3 mg when the C started again and then after being on 3mg after about a month the Dr. started tapering me because I was severely constipated and now-back to the nightmare. I watch my diet very carefully, granted I probably screwed up at the wedding and bridal showers I went to. I am 5" 6" and I have lost weight, down to 98 lbs. I have cut out chicken that I ate daily trying to see if I would help, so far it hasn't.
The arthritis in my hands is back big time, the oral lichen planus never got better, however the small patch of eczema is getting better. I still have that pain on my left side, waist high, it comes and goes but it is not a crippling pain, just there.
I needed to vent, thanks for listening,
Susanne
So sorry Susanne! It's so frustrating, isn't it.? it sounds like you are having a leaky Gut since your arthritis is back. I hope the higher dose of Entocort helps soon! Since taking chicken out didn't make a difference, you might want to add it back in since you are way too light for being 5' 6".
Leah
Leah
Hi Leah & Tex,
Today I refilled my generic Entocort. The pharmacy didn't have enough of the Mylan brand to give me, so they gave me 20 Mylan and 70 AstraZeneca. I am going to take the AstraZeneca generic first and see if I tolerate it better. I also had to refill my Levothyroxine for my thyroid and Cyclobenzaphrine for my fibromyalgia. All my problems started around the same time. I'm sick of all of this, Drs., pills and diets!!!! Yes, it is frustrating. I am back to taking the 9 mg. of budesonide, this is the 4th day. Today there was no BM, but alot of tummy rumblings and gas.
Leah, I'm not exactly sure what leaky gut is nor do I know if I have mast cell issues. I cut out the chicken to see what happens. I used beef instead of chicken last week and for this coming week I used turkey instead of chicken. On Sundays I make a big batch of veggies and chicken (now beef or turkey) for the week to bring with me to work for lunch. I also substitued the green beans in my batch of veggies and beef or turkey with squash which is on the list of ok foods for fodmaps and mast cells, I also put carrots in there. But reading about mast cell issues, I should only be eating freshly cooked foods, right? I don't have time in the morning to cook myself something for lunch. I also starting taking an antihistamine. Breakfast is hard but dinner time is okay. With the D and the adjustments to my diet, I think that is why I lost weight.
I hope to have Panel C done in the near future. The arthritis in my hands is the worse it's ever been, my arms ache like when I was diagnosed with the fibromyalgia.
Am I on the right track?
Thanks,
Susanne
Today I refilled my generic Entocort. The pharmacy didn't have enough of the Mylan brand to give me, so they gave me 20 Mylan and 70 AstraZeneca. I am going to take the AstraZeneca generic first and see if I tolerate it better. I also had to refill my Levothyroxine for my thyroid and Cyclobenzaphrine for my fibromyalgia. All my problems started around the same time. I'm sick of all of this, Drs., pills and diets!!!! Yes, it is frustrating. I am back to taking the 9 mg. of budesonide, this is the 4th day. Today there was no BM, but alot of tummy rumblings and gas.
Leah, I'm not exactly sure what leaky gut is nor do I know if I have mast cell issues. I cut out the chicken to see what happens. I used beef instead of chicken last week and for this coming week I used turkey instead of chicken. On Sundays I make a big batch of veggies and chicken (now beef or turkey) for the week to bring with me to work for lunch. I also substitued the green beans in my batch of veggies and beef or turkey with squash which is on the list of ok foods for fodmaps and mast cells, I also put carrots in there. But reading about mast cell issues, I should only be eating freshly cooked foods, right? I don't have time in the morning to cook myself something for lunch. I also starting taking an antihistamine. Breakfast is hard but dinner time is okay. With the D and the adjustments to my diet, I think that is why I lost weight.
I hope to have Panel C done in the near future. The arthritis in my hands is the worse it's ever been, my arms ache like when I was diagnosed with the fibromyalgia.
Am I on the right track?
Thanks,
Susanne
As long as you freeze individual portions soon after cooking, and thaw them just before eating, you should be OK. If you have access to a microwave at work (for thawing), that would be ideal. If not, you can thaw before leaving home, and keep the food cold until lunchtime.Susanne wrote:But reading about mast cell issues, I should only be eating freshly cooked foods, right? I don't have time in the morning to cook myself something for lunch.
Yes, I believe you are. The arthritis and fibromyalgia pains are the result of a leaky gut. Those pains should diminish as your gut heals. When you receive the results of a Panel C test, that should make choosing foods much easier.Susanne wrote:Am I on the right track?
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.
Hi Tex,
Thanks so much. I froze the lunches right after your reply. I'm not thinking straight sometimes.
This is day 5 on the 9 mg. of generic Entocort and there is no change. In May, when I started the 9 mg., norman visited on day 3.
I ordered Panel C last night, an early Christmas gift to myself.
Thanks again.
Susanne
Thanks so much. I froze the lunches right after your reply. I'm not thinking straight sometimes.
This is day 5 on the 9 mg. of generic Entocort and there is no change. In May, when I started the 9 mg., norman visited on day 3.
I ordered Panel C last night, an early Christmas gift to myself.
Thanks again.
Susanne
Good luck Susanne. I hope the Entocort kicks in soon.
I am still getting use to freezing everything.( I KNOW I have a histamine problem because when i take a large dose of antihistamines, norman shows up). When I buy a package of nitrite free bacon, I make individual packages and thaw them as I use one up. I also chop up portions of cooked chicken breast ( which thaw very quickly) so I can make chicken salad when I am in the mood. This whole thing is so time consuming sometimes.
Again, good luck and keep us posted on your progress
Leah
I am still getting use to freezing everything.( I KNOW I have a histamine problem because when i take a large dose of antihistamines, norman shows up). When I buy a package of nitrite free bacon, I make individual packages and thaw them as I use one up. I also chop up portions of cooked chicken breast ( which thaw very quickly) so I can make chicken salad when I am in the mood. This whole thing is so time consuming sometimes.
Again, good luck and keep us posted on your progress
Leah
Hi Leah,
I was wondering which antihistamine you take and what you mean by a large dose? I am taking Loratadine 10 mg. actually it is Costco's Kirkland brand. I usually shy away from allergy meds, a few years back I had a rare reaction to Claritan, a hepatitis like illness. I am going to stick with the recommended dose.
How are your husband's chicken pox? Did anyone else get them?
Thanks,
Susanne
I was wondering which antihistamine you take and what you mean by a large dose? I am taking Loratadine 10 mg. actually it is Costco's Kirkland brand. I usually shy away from allergy meds, a few years back I had a rare reaction to Claritan, a hepatitis like illness. I am going to stick with the recommended dose.
How are your husband's chicken pox? Did anyone else get them?
Thanks,
Susanne
hi Susanne. My husband is all better. Thank you.
I take Allegra ( one of the reasons is because it has no lactose or soy in it) and I usually only take one a day, but I have taken three to see if it really made a big difference .... and it did. it gave me the answer i was looking for ( whether I have a mast cell/histamine issue).
leah
I take Allegra ( one of the reasons is because it has no lactose or soy in it) and I usually only take one a day, but I have taken three to see if it really made a big difference .... and it did. it gave me the answer i was looking for ( whether I have a mast cell/histamine issue).
leah
Leah wrote:but I have taken three to see if it really made a big difference .... and it did. it gave me the answer i was looking for ( whether I have a mast cell/histamine issue).
Thanks for sharing that information. I've been wondering if anyone has ever tried a higher dose for mast cell problems.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.
Hi all,
It took almost 2 weeks for the 9 mg. of generic Entocort to kick in, Norman visited yesterday and today. I am taking 1 antihistamine a day.
Today we are leaving for a short vacation to the Bethany Beach area in Delaware. Eating will be a challenge. On our way out this morning I am dropping off at UPS, the stool specimen for Enterolab's panel C. I look forward to the results, not really, I just want to know if anything other foods disagree with me.
Are Larabar's a safe food?
Thanks,
Susanne
It took almost 2 weeks for the 9 mg. of generic Entocort to kick in, Norman visited yesterday and today. I am taking 1 antihistamine a day.
Today we are leaving for a short vacation to the Bethany Beach area in Delaware. Eating will be a challenge. On our way out this morning I am dropping off at UPS, the stool specimen for Enterolab's panel C. I look forward to the results, not really, I just want to know if anything other foods disagree with me.
Are Larabar's a safe food?
Thanks,
Susanne
Susanne,
That was pretty much just in the nick of time. I've never tried a Larabar, so I have no opinion on them, except that if you could eat them before, you should be able to eat the while using Entocort.
I hope your vacation trip goes smoothly, and you're able to thoroughly enjoy it.
Tex
That was pretty much just in the nick of time. I've never tried a Larabar, so I have no opinion on them, except that if you could eat them before, you should be able to eat the while using Entocort.
I hope your vacation trip goes smoothly, and you're able to thoroughly enjoy it.
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.