Hi everyone, I was diagnosed with LC last week. My doctor prescribed Budesonide, and my insurance is refusing to pay for it without prior authorization. It's a huge headache, and I'm trying hard to be patient with the process when I really just want to get better. In the meantime, I've been reading up on this condition and trying to figure out if there's anything I can do for myself. My main question is, are my symptoms normal for this condition? Or do you think there might be something else going on too? Here's my background:
I've had diarrhea and bloating for years now, and thought it was IBS. I've been "managing" it with diet and OTC meds. Well last October things took a big turn for the worse. I got really sick with an upper respiratory infection, so I took Sudafed cough and cold and went to bed. About an hour after I took that stuff I woke up feeling nauseous, dizzy, hot and tingly, and had to run for the bathroom with severe diarrhea. I then started shaking and having chills. I would also have this hot, prickling sensation starting in my chest and spreading down my arms, etc. This cycle repeated for hours, and I honestly thought maybe I was dying. Even 12 hours later I couldn't take a sip of water without setting off this horrible chain reaction all over again. I ended up going to the local ER where they told me maybe I picked up a stomach bug and sent me home. It was a complete waste of time.
A week later I had only improved enough to drink some water and broth, but I still couldn't eat anything without setting it all off again. I went to a different ER this time, and they gave me fluids for dehydration and prescriptions for potassium and anti-nausea medication. The ER doctor thought maybe the hot, tingly, dizzy sensation was due to the vagus nerve being overstimulated. Weeks went by and I recovered enough to start eating a bit of meat again, and then I had a relapse in January. I finally got an appointment with a specialist, but the nurse practitioner I saw doesn't seem to know what's causing this, which is why I was sent for a colonoscopy and got the LC diagnosis. My blood work and stool cultures all came back negative.
To make a long story short, I'm still trying to get over whatever this is. Every time I eat anything that's remotely hard to digest my lips start tingling, my cheeks turn red, there is a hot prickly sensation in my chest, my heart rate speeds up, I feel dizzy, my intestines start bubbling and gurgling, I have bathroom urgency, and then fatigue sets in. Does this sound like LC, or it is something else in addition? I would really, really appreciate any input you guys can give me. Thanks!
New LC Diagnosis, Weird Symptoms?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi J. M.,
Welcome to our Internet family. Your MC symptoms are typical, but it sounds as though you may have developed food allergies that are triggering your MC symptoms. Do not eat foods that cause those symptoms— the low BP during the reaction can kill you. You may indeed have been at risk of dying — those are symptoms of anaphylactic shock. The tingling, dizzy, increased HR, etc. are allergy symptoms caused by the release of way too much histamine. I'm guessing that you may have mastocytosis or even systemic mastocytosis.
You need to see Dr. Mariana Castells at the Brigham and Women's hospital in Boston or one of her students. A regular GI doctor can't help you because they don't understand what's going on. What state do you live in? There may be a closer doctor who can help you.
Again, welcome aboard and please feel free to ask anything.
Tex
Welcome to our Internet family. Your MC symptoms are typical, but it sounds as though you may have developed food allergies that are triggering your MC symptoms. Do not eat foods that cause those symptoms— the low BP during the reaction can kill you. You may indeed have been at risk of dying — those are symptoms of anaphylactic shock. The tingling, dizzy, increased HR, etc. are allergy symptoms caused by the release of way too much histamine. I'm guessing that you may have mastocytosis or even systemic mastocytosis.
You need to see Dr. Mariana Castells at the Brigham and Women's hospital in Boston or one of her students. A regular GI doctor can't help you because they don't understand what's going on. What state do you live in? There may be a closer doctor who can help you.
Again, welcome aboard and please feel free to ask anything.
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.
I agree....
Those are the same symptoms that I encountered when I had a reaction to Lialda....very bad symptoms! Had to take a high dose benedryl to get my body under control...and I called my GI and was just told I had a reaction to the med and to stop taking it...
geesh....
It did not last hours for me though...you are having a VERY BAD reaction!
Get care soon!
Those are the same symptoms that I encountered when I had a reaction to Lialda....very bad symptoms! Had to take a high dose benedryl to get my body under control...and I called my GI and was just told I had a reaction to the med and to stop taking it...
geesh....It did not last hours for me though...you are having a VERY BAD reaction!
Get care soon!
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
Dx LC April 2012 had symptoms since Aug 2007
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
hi there
welcome to our group - sympathies that you had to find us.
your journey of symptoms etc is very common for people of this group. and as Erica has mentioned above, the intensity and duration of the histamine/mast cell issue is very profound. and yes the fatigue, dizziness, urgency etc are all part of LC.
further to Tex's reply, here is a section of the forum about Mast Cells that will help you understand what is going on and how to move forward treatment wise.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=74
the low inflammation, bland eating plan that we strongly encourage people to do is proven to be very helpful for majority of the people here. This coupled with a low histamine approach with food/drink choices will help things alot.
here is a link to that section of the forum
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
regarding the medication and insurance issue - there are some people here that have purchased medication like Budesonide from Canada and/or India at a cheaper cost when they had insurance coverage issues.
not sure how much reading you have done here thus far, - it is reasonably rare for medication alone to resolve LC issues like you are having. the success of medication is very much linked to the levels of Vit D3 and magnesium in our body, and following a low inflammation eating plan and lifestyle.
in your case where there is a very intense histamine reaction, also look beyond food triggers to things like , pollen, pollution, chemicals, mold, in your home, in your workplace etc. exposure to these external triggers make our food reactions way worse.
keep reading and please ask questions - there are alots of supportive knowledgeable people here that can help you get better.
welcome to our group - sympathies that you had to find us.
your journey of symptoms etc is very common for people of this group. and as Erica has mentioned above, the intensity and duration of the histamine/mast cell issue is very profound. and yes the fatigue, dizziness, urgency etc are all part of LC.
further to Tex's reply, here is a section of the forum about Mast Cells that will help you understand what is going on and how to move forward treatment wise.
http://www.perskyfarms.com/phpBB2/viewforum.php?f=74
the low inflammation, bland eating plan that we strongly encourage people to do is proven to be very helpful for majority of the people here. This coupled with a low histamine approach with food/drink choices will help things alot.
here is a link to that section of the forum
http://www.perskyfarms.com/phpBB2/viewforum.php?f=79
regarding the medication and insurance issue - there are some people here that have purchased medication like Budesonide from Canada and/or India at a cheaper cost when they had insurance coverage issues.
not sure how much reading you have done here thus far, - it is reasonably rare for medication alone to resolve LC issues like you are having. the success of medication is very much linked to the levels of Vit D3 and magnesium in our body, and following a low inflammation eating plan and lifestyle.
in your case where there is a very intense histamine reaction, also look beyond food triggers to things like , pollen, pollution, chemicals, mold, in your home, in your workplace etc. exposure to these external triggers make our food reactions way worse.
keep reading and please ask questions - there are alots of supportive knowledgeable people here that can help you get better.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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jmanderson38
- Posts: 2
- Joined: Sun Apr 09, 2017 7:43 am
Thanks so much for your quick replies, and giving me a place to start! Unfortunately, I live in Michigan and don't think I'll be able to travel to Boston to be evaluated for mastocytosis. It's so discouraging that the doctors here in my area don't seem to know what my symptoms mean - if they even listen to what I'm saying at all! My last doctor (before the LC diagnosis) literally cut me off and said we'll get to that later, and then claimed it was probably my gallbladder! Anyway, I have heard that the University of Michigan doctors in Ann Arbor are the best in the state, and that might be the next step if I don't see any improvement with the restricted diet and Budesonide.
Also, I'm still waiting on the insurance to approve or deny the pre-authorization paperwork for the Budesonide. Since it's so expensive, do you guys think it would be worth it for me to pay for it out of pocket? Or to try to obtain it from Canada? I guess I'm just looking for some quick relief, although I'm definitely doing a little better with restricting my diet to practically nothing.
As for the bad reaction I had, I really believe it was due to the cough suppressant Dextromethorphan HBr. The ER doctors didn't seem to think that that was probable, but I had had a minor reaction to taking Delsym cough medicine a couple of years ago. At the time I didn't know what it was, and it only lasted maybe 2-3 hours. After looking into it, the same active ingredient was in the Sudafed that I took back in October. The symptoms were almost identical, except much more severe and lasted much longer. Has anyone else in this group reacted to this medication? I've found literally nothing online to suggest that anyone else has a problem with it other than a Wikipedia article stating that some people are slow metabolizers, and it can stay active in their system for longer than normal...
Sorry if I've been asking questions that have already been answered 100 times. This condition, plus working full-time on 3rd shift has really taken it out of me, and I haven't done as much reading as I'd like. I'm sure you all can relate. :) Anyway, thanks again!
Also, I'm still waiting on the insurance to approve or deny the pre-authorization paperwork for the Budesonide. Since it's so expensive, do you guys think it would be worth it for me to pay for it out of pocket? Or to try to obtain it from Canada? I guess I'm just looking for some quick relief, although I'm definitely doing a little better with restricting my diet to practically nothing.
As for the bad reaction I had, I really believe it was due to the cough suppressant Dextromethorphan HBr. The ER doctors didn't seem to think that that was probable, but I had had a minor reaction to taking Delsym cough medicine a couple of years ago. At the time I didn't know what it was, and it only lasted maybe 2-3 hours. After looking into it, the same active ingredient was in the Sudafed that I took back in October. The symptoms were almost identical, except much more severe and lasted much longer. Has anyone else in this group reacted to this medication? I've found literally nothing online to suggest that anyone else has a problem with it other than a Wikipedia article stating that some people are slow metabolizers, and it can stay active in their system for longer than normal...
Sorry if I've been asking questions that have already been answered 100 times. This condition, plus working full-time on 3rd shift has really taken it out of me, and I haven't done as much reading as I'd like. I'm sure you all can relate. :) Anyway, thanks again!
Dear JM,
My insurance paid for Entocort/budesonide, but my co-pay was still $600 a month, which was just too much for me to pay. My doctor gave me samples to start out with, then I ordered from Canada. At that time, I think it cost me $200 for a 3-month supply. I only took it for three months, and then I went to diet changes to control the MC. For me, it was worth taking it even for that short time, because it showed me what it felt like to be normal, and how abnormal my BMs and constant gut roiling were. The diet changes are what has made the real difference, though--eliminating all gluten, dairy, soy, and legumes for my diet.
Martha
My insurance paid for Entocort/budesonide, but my co-pay was still $600 a month, which was just too much for me to pay. My doctor gave me samples to start out with, then I ordered from Canada. At that time, I think it cost me $200 for a 3-month supply. I only took it for three months, and then I went to diet changes to control the MC. For me, it was worth taking it even for that short time, because it showed me what it felt like to be normal, and how abnormal my BMs and constant gut roiling were. The diet changes are what has made the real difference, though--eliminating all gluten, dairy, soy, and legumes for my diet.
Martha
Martha
J.M.,
Your allergic reactions may well have been due to an ingredient in Delsym and Sudafed. Anaphalatic reactions typically last for only a few hours.
Budesonide will allow you to feel almost normal, but you can't use it full strength forever or it will cause osteoporosis, so you need to figure out how to make the diet work for the sake of your long-term health.
A lot of members who can't afford budesonide from the U.S. order it from India (alldaypharmacy) where the current price is $49.66 for 90 capsules (a 30-day supply) plus shipping. Don't order more than a 90-day supply or you risk confiscation by Customs. Or you can buy the same product (Budez CR 3 mg) from Canada for 40 % more. Canada requires a prescription, India does not.
Tex
Your allergic reactions may well have been due to an ingredient in Delsym and Sudafed. Anaphalatic reactions typically last for only a few hours.
Budesonide will allow you to feel almost normal, but you can't use it full strength forever or it will cause osteoporosis, so you need to figure out how to make the diet work for the sake of your long-term health.
A lot of members who can't afford budesonide from the U.S. order it from India (alldaypharmacy) where the current price is $49.66 for 90 capsules (a 30-day supply) plus shipping. Don't order more than a 90-day supply or you risk confiscation by Customs. Or you can buy the same product (Budez CR 3 mg) from Canada for 40 % more. Canada requires a prescription, India does not.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex and Martha have replied regarding the options regarding budenside/entocort.
regarding the mast cell/histamine issues - taking safe antihistamine medication will help to reduce intensity of your symptoms - have you considered this?
I understand that life is time consuming, but right now your body is asking for help and time... I do encourage you to spend 20 minutes doing some reading (print these items and read them when you are having your meal or sitting on the loo!) we have to make time to do the right things to get well.
sadly there is no quick fix to these issues, nor is there a guaranteed solution that will work. These issues are for life, we cant eradicate them totally, we have to learn how to live with them.
the AFFORDABLE things that will help you now and in the long term are Vit D3, magnesium and anti-histamines.
here are some links to info to print - if you dont have time, ask a family member or friend to print them for you.
- how are mast Cell issues treated
http://microscopiccolitis.org/articles/ ... eated.html
regarding the mast cell/histamine issues - taking safe antihistamine medication will help to reduce intensity of your symptoms - have you considered this?
I understand that life is time consuming, but right now your body is asking for help and time... I do encourage you to spend 20 minutes doing some reading (print these items and read them when you are having your meal or sitting on the loo!) we have to make time to do the right things to get well.
sadly there is no quick fix to these issues, nor is there a guaranteed solution that will work. These issues are for life, we cant eradicate them totally, we have to learn how to live with them.
the AFFORDABLE things that will help you now and in the long term are Vit D3, magnesium and anti-histamines.
here are some links to info to print - if you dont have time, ask a family member or friend to print them for you.
- how are mast Cell issues treated
http://microscopiccolitis.org/articles/ ... eated.html
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
-
jessica329
- Adélie Penguin
- Posts: 214
- Joined: Thu Oct 11, 2012 6:47 pm
- Location: CT
Hi,
Budesonide worked for me the first time but not the second time. I'm currently on Lialda (and in the rare camp that Lialda works). I have been dealing with a smaller flare for the last week and it's completely my fault (had a few drinks, not doing that again). As of April 1st, my insurance is not covering my medication anymore. I did some research and discovered that many of the drugs companies have low-income programs (I just missed the cut-off by a few thousand dollars) that makes the drug affordable. Lialda has a discount program for those that don't qualify for the low-income program ($10 for the first 3 months and then $140 a month for the rest of the year). I highly suggest you go on Entocort's website and see if they offer any such programs.
I also highly recommend that you keep a food journal to identify and eliminate any foods that set you off if you do not want to follow the bland eating protocol as Gabby mentioned. It may take some time but definitely makes a difference!
Budesonide worked for me the first time but not the second time. I'm currently on Lialda (and in the rare camp that Lialda works). I have been dealing with a smaller flare for the last week and it's completely my fault (had a few drinks, not doing that again). As of April 1st, my insurance is not covering my medication anymore. I did some research and discovered that many of the drugs companies have low-income programs (I just missed the cut-off by a few thousand dollars) that makes the drug affordable. Lialda has a discount program for those that don't qualify for the low-income program ($10 for the first 3 months and then $140 a month for the rest of the year). I highly suggest you go on Entocort's website and see if they offer any such programs.
I also highly recommend that you keep a food journal to identify and eliminate any foods that set you off if you do not want to follow the bland eating protocol as Gabby mentioned. It may take some time but definitely makes a difference!
Jessica
Lymphocytic colitis August 2012
Lymphocytic colitis August 2012