New here and overwhelmed!!

kimtg68 · Post by **kimtg68** » Sat Jul 17, 2010 8:39 pm

mbeezie wrote:
Do you know if they checked for mast cells when they took your biopsies? I suspect I have some sort of mast cell problem that was triggered by my vaccine.

Mary Beth

I've heard talk before of this "mast cells" issue. What is this?????

Gabes-Apg · Post by **Gabes-Apg** » Sun Jul 18, 2010 3:20 am

G'day Tanya Lynn
:gday:

Greetings from downunder

well... what a rollercoaster ride you have had health wise.

I found this site within 24hrs of diagnosis and I owe my success of gaining my life back (ie managing the MC demon) to the advice and support of the wonderful people in this family.

take things day by day, if the amount of D/BM motions reduces then that is a step forward. there is no quick cure or shortcuts, it takes time, patience, diligence to figure out what is going to work for you! and although lots of us have some similarities with triggers and techniques we use for good health, it is important to remember that what works for one may not work for another, you have to figure out what works for you. (diet, meds, etc)

There will be tears and bad days - and thats the amazing part of these wonderful people you can come to the PP family table, have your vent, we have all been there at one day or another. there will be hugs and support to get you through the day (or night)

The volume of information is full on at first, with time and as you start to feel better then you will be able to search and find the info that relates to you.

take care -
Gabes

ps - i cant remember if tex mentioned it in his post but this is the place that you can ask 'anything' poop and gas are not taboo embarrassing subjects in this family

Post by **tex** » Sun Jul 18, 2010 7:36 am

Kim,

Basically, mast cells release histamine, in response to allergens, (histamines cause the classic allergic reactions that involve sneezing, watery eyes, hives, etc, that can result in anaphylaxis, in severe cases), and they're primarily involved with skin and respiratory system reactions. However, mast cells are also present in the digestive tract, and when they become activated in the intestines, they can really complicate digestive issues.

This blog contains basic information about mast cells:

http://thefooddoc.blogspot.com/2008/02/ ... -i-be.html

and here are a few threads where members have discussed them:

http://www.perskyfarms.com/phpBB2/viewt ... mast+cells

http://www.perskyfarms.com/phpBB2/viewt ... mast+cells

http://www.perskyfarms.com/phpBB2/viewt ... mast+cells

http://www.perskyfarms.com/phpBB2/viewt ... mast+cells

http://www.perskyfarms.com/phpBB2/viewt ... mast+cells

Tex

starfire · Post by **starfire** » Sun Jul 18, 2010 8:26 am

So glad you found us. It sounds like you have already done quite a bit of evaluation and research. I wouldn't hesitate to try the Entocort but each person has their own opinion.

I also developed MC after stopping smoking but it seems i did everything that is thought to be connected with develpoing the disease so I can't really pin it down to one thing.

Good luck and looking forward to more posts.

Shirley

ant · Post by **ant** » Sun Jul 18, 2010 9:12 am

Dear Lynn,

There was a discussion some time back on the best time to take entocort. If I remember correctly if you are taking three a day it should be two first thing in the morning and the other before bed; if two, two first thing in the morning; if one, one first thing in the morning. I think this is because it is in the morning that the immune system is most active and needing calming. Someone please correct me if I have this wrong.

Best, ant

Joefnh · Post by **Joefnh** » Sun Jul 18, 2010 12:40 pm

Ant I have read instructions ranging from all 3 in the AM to one capsule at each meal. I asked my GI why he had me taking all 3 in the AM, his response was to minimize the suppression of the immune system. I am not sure why that's the case though.

Joe

MaggieRedwings · Post by **MaggieRedwings** » Wed Jul 21, 2010 5:08 am

Morning Tanya and Welcome.

Sorry I am late on the draw but that is me and getting time for the computer other than work and home. You have definitely had a long haul of it but it sounds like you have charted a course for yourself that should give you relief via diet and meds. Please hang in there and research this site to the end - it will be well worth it.

Congrats on the no smoking.

Maggie

Tanya Lynn · Post by **Tanya Lynn** » Wed Jul 21, 2010 4:45 pm

Just checking back with an update. Today is my 3rd day of taking the full dose
of 9 mgs and within 45 mins of taking the medicine I get an horrible headache.
I'm hoping that it will go away soon, also very nauesated. Now, today my legs feel like I've just ran a marathon, they just ache so bad. I just don't want to feel like a complainer but was just wondering if this is typical side effects from the Endocort. The D has slowed down but still going between 10-15 a day....
I have ordered the test kit from Enterolab...

Gabes-Apg · Post by **Gabes-Apg** » Wed Jul 21, 2010 4:50 pm

The aches 'and feeling like a truck has hit you' is common (with or without entocort)

the 'joy' of MC is that it tends to be an all of body type condition.

Joefnh · Post by **Joefnh** » Wed Jul 21, 2010 5:06 pm

Tanya as Gabes mentioned the aches and pains in the muscles can be a normal part of MC. The headache I experienced as well, it felt like a frontal sinus headache for me, but this did pass after 7 - 10 days of use. As far as nausea, if you take the 9mg in the AM be sure to wait at least 30 minutes and then have something to eat with plenty of liquids.

Tanya another thought is that the use of the corticosteroids can cause a reduction in calcium and potassium in the blood. Lower levels of these and other minerals can result in muscle cramping and pain. You may want to try something as simple as a sports drink or mineral supplements that are GF/DF.

Hang in there, it should be getting better soon.

Best Wishes

--Joe

Post by **tex** » Wed Jul 21, 2010 9:50 pm

Tanya,

A "horrible headache", within 45 minutes of taking the drug, is not a good sign. If that continues, especially if it is accompanied by dizziness, blurred vision, or other neurological symptoms, I would either consult with my doctor, or consider discontinuing the use of the drug.

Entocort does not have to be taken on an empty stomach. If I were in your shoes, I would try taking it immediately after or during breakfast, to see if that might help to alleviate the symptoms you mentioned. There is no point in suffering - medications are supposed to be helpful, but if they make us feel worse, we have to weigh the benefits against the side effects, (and the expense), and decide if it is worth it.

I started writing a post about the use of Entocort EC, a couple of days ago, but I had to go to work, and didn't have time to finish it, so I saved it as a draft. I may need to finish that post, one of these days, because a lot of people seem to have similar problems with Entocort.

Tex

Tanya Lynn · Post by **Tanya Lynn** » Thu Jul 22, 2010 9:15 am

Tex,

I will try taking the medicine as you suggested. Thanks again so much for
all your help.

One thought, I take the Endocort first thing upon waking up, then I wait about
30 mins. and take my thyroid medicine, Armour. Could this be causing the
headaches? I was taking the Armour first thing in morning as directed, but
have changed that to taking the Endocort first...

Thanks again,

Tanya

Post by **tex** » Thu Jul 22, 2010 10:21 am

I doubt that it would make much difference, but I take Armour also, and I was under the impression that it should be the first "drug" taken in the morning. Anyway, I always take the Armour first, on an empty stomach, and I take all my other pills, (blood thinner, heart/BP pills, vitamins, etc.),

, right after breakfast. I have never taken Entocort, though.

You're most welcome,
Tex

Joefnh · Post by **Joefnh** » Thu Jul 22, 2010 5:16 pm

Tex you had mentioned writing a post about the use of Entocort; I had a file with several pages of data taken from the different manufacturers of Entocort EC. Basically most seem to prescribe the 3 capsules in the morning before breakfast, while Budenofalk manufactured by DrFalk recommends a schedule of 1 capsule 3x a day 30 minutes before each meal.

Manufacturer DrFalk (Germany , UK)

https://www.drfalkpharma.de/fileadmin/m ... PSULES.pdf

• The usual dose is one capsule three times a day (morning, midday and evening).
• Take the capsules about 30 minutes before a meal.
• Swallow the capsules whole with a glass of water (avoid taking with grapefruit juice).
• Do not chew the capsules.

Astra Zeneca (Canada)

http://www.astrazeneca.ca/documents/Pro ... CIL_en.pdf

Acute Treatment
The usual dose for treatment of acute symptoms is 9 mg per day, for up to 8 weeks. The dose
can be given once daily as three 3 mg capsules in the morning.

Long Term Treatment
The usual starting dose for long-term treatment is 6 mg per day. Take two 3 mg capsules in
the morning, before breakfast. Your doctor may want to change the dose, depending on the
activity of your disease.

Astra Zeneca (UK)

http://xpil.medicines.org.uk/viewpil.aspx?docid=9144 (This link form the Astra Zeneca website for he UK)

Swallow the capsules whole with a glass of water.
The usual dose for an attack of Crohn's disease is 3 capsules in the morning before breakfast.

I look forward to the post Tex

--Joe

Tanya Lynn · Post by **Tanya Lynn** » Thu Jul 22, 2010 8:23 pm

Tex,

Thanks again for your advice...

Also looking forward to your post.

Tanya