Sharon76
05-30-2006, 04:41 AM
I had my appointment last week with my gastro specialist. He was brilliant!!! Really informative and gave me the full works with my crohn's.
First he asked me about all my symptoms, then asked what medication i was on and asked how much i knew about crohn's.
He explained more in detail about the crohn's and then said he was going to change my medication as i have been put on the wrong on. Apparently mesalazine is for people who have crohn's in the large bowel not the small bowel, so he has put me on pentasa (sp). He has also put me on a course of antibiotics to clear up any bacteria that may be lurking about and making it worse. he has also started to lower my steroids, which i'm glad about.
He aslo mentioned another drug which has said i may benefit from but due to the risks he has asked me to go away and thik about it .......azathioprine. Apparently it can mess up a person's bone marrow so this is why he has asked me to think about it first and go back in two weeks with an answer. So i would love to hear from anyone who has had exeprience of this drug.
He also examined my stomach and part of my small bowel is swollen, he could actually feel it and this is what is having problems reacting to the meds, for some reason it isnt sorting that bit of my small bowel out. I asked why and he gave me two reasons.................first.......wron g drugs..........second............i have a stricture there which will never react to drugs only surgery. So he has changed all of my meds to see if it will react to drugs if not they i need that part removed.
He is a great consultant, very informative but yet very friendly and caring. He also gave me a phone number of a crohn's specialist nurse incase i have a flare ups in between my appointments of seeing him. He also put me on a low residue diet again and in touch with a dietitian.
So..............my appointment went very well, and like i said i would love to hear from anyone who has been on this azathioprine.
Angela..................how are you???
First he asked me about all my symptoms, then asked what medication i was on and asked how much i knew about crohn's.
He explained more in detail about the crohn's and then said he was going to change my medication as i have been put on the wrong on. Apparently mesalazine is for people who have crohn's in the large bowel not the small bowel, so he has put me on pentasa (sp). He has also put me on a course of antibiotics to clear up any bacteria that may be lurking about and making it worse. he has also started to lower my steroids, which i'm glad about.
He aslo mentioned another drug which has said i may benefit from but due to the risks he has asked me to go away and thik about it .......azathioprine. Apparently it can mess up a person's bone marrow so this is why he has asked me to think about it first and go back in two weeks with an answer. So i would love to hear from anyone who has had exeprience of this drug.
He also examined my stomach and part of my small bowel is swollen, he could actually feel it and this is what is having problems reacting to the meds, for some reason it isnt sorting that bit of my small bowel out. I asked why and he gave me two reasons.................first.......wron g drugs..........second............i have a stricture there which will never react to drugs only surgery. So he has changed all of my meds to see if it will react to drugs if not they i need that part removed.
He is a great consultant, very informative but yet very friendly and caring. He also gave me a phone number of a crohn's specialist nurse incase i have a flare ups in between my appointments of seeing him. He also put me on a low residue diet again and in touch with a dietitian.
So..............my appointment went very well, and like i said i would love to hear from anyone who has been on this azathioprine.
Angela..................how are you???
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Angela22F
05-30-2006, 02:04 PM
Hi Sharon :wave:
That is great news :bouncing: . I am so happy you are doing well and have such a great consultant. I was actually going to make a thread to you asking if you were back at work yet - couldn't really remember the date, although I thought it not til early June - and to ask how you were doing :)
It isn't great that you have a stricture and could possibly have to have it removed, but, hopefully the new drugs will be your cure. Your luck and health have seemed to take a good turn up - I'll keep my fingers crossed that they stay that way ;)
I am doing well. Watching my diet as usual. I have found I am more lactose intolerant than first suspected (all cheese, "lactose free" milks, some of my medicines!, etc. I have to read labels very closely) - so knowing that has helped. Funny though, from reading these boards, I should have known better. Shame on me for being ignorant :p
I am feeling better... but not as good as I feel I should be feeling. Still having pain, and having some joint issues still. But I'm at a stand still. Theres nothing more the GP can do, hes just trying to keep my vitamin levels in check... so I'm waiting on an indecisive Gastro... lol doesn't seem like a good start. Trying to keep as active as possible.
I hope someone has some info on the azathioprine for you. There seems to be a few more people lurking around now that have Crohn's... so hopefully someone has some insight for you.
Cheers to continued improvements :D
Angela
That is great news :bouncing: . I am so happy you are doing well and have such a great consultant. I was actually going to make a thread to you asking if you were back at work yet - couldn't really remember the date, although I thought it not til early June - and to ask how you were doing :)
It isn't great that you have a stricture and could possibly have to have it removed, but, hopefully the new drugs will be your cure. Your luck and health have seemed to take a good turn up - I'll keep my fingers crossed that they stay that way ;)
I am doing well. Watching my diet as usual. I have found I am more lactose intolerant than first suspected (all cheese, "lactose free" milks, some of my medicines!, etc. I have to read labels very closely) - so knowing that has helped. Funny though, from reading these boards, I should have known better. Shame on me for being ignorant :p
I am feeling better... but not as good as I feel I should be feeling. Still having pain, and having some joint issues still. But I'm at a stand still. Theres nothing more the GP can do, hes just trying to keep my vitamin levels in check... so I'm waiting on an indecisive Gastro... lol doesn't seem like a good start. Trying to keep as active as possible.
I hope someone has some info on the azathioprine for you. There seems to be a few more people lurking around now that have Crohn's... so hopefully someone has some insight for you.
Cheers to continued improvements :D
Angela
Angela22F
05-31-2006, 10:26 AM
:wave: Hi Sharon... I just wanted to add my two cents worth on the azathioprine... for what its worth :)
I have had a quiet morning so far, and decided to research a bit on the drug as I am curious. You probably already know all that I am going to say - but I will share anyway :D
Azathioprine is an Immunosupressive... therefore comprises your body's ability to ward/fight off infection. This in itself can be a problem. In Crohn's disease, it can take up to six months, or more, to see results from azathioprine. Side effects include reduced appetite and nausea, sometimes vomiting, and canker sores in the mouth. A serious (and life threatening) side effect is reduced activity of bone marrow, but this can be monitored with regular blood tests. As well, users should watch for unusual bleeding and/or bruising. Some people may develop pancreatitis (inflammation of the pancreas) some months after starting these drugs.
After reading all of that... and more... in my opinion I think I would skeptical on starting this drug. Yes, it can be monitored... but how quickly will the monitoring pick up on any damages... and how quickly can they be reversed (ie bone marrow)?
Six months is a long time as well. You already have a stricture... and if it takes this drug the six months to take full effect... how much will your stricture be progressed? I would want my consultant to answer this for me.
Apparently, the 5 ASA's work very well, but only in large doses. I think I read 4 to 4.8 grams a day - that equates to 12 pills of Asacol or 16 pills of pentasa... were you taking this high a dose? I believe you are way past this point... but thought it was very interesting when I read that. It's from a lecture by David Sachar, Professor Emeritus, Gastoenterology Division, Mount Sinai Medical Center, New York, NY.
There is a really good MSN group - Crohn's Disease in the UK .... have you found this one? I googled "aziathioprine side effects" and found it that way.
I know none of what I said is really what you are looking for. Nothing can replace a person's personal expereince story. But I just wanted to share my thoughts on it. I know you probably are fully aware of everything I said...
Cheers
Angela
I have had a quiet morning so far, and decided to research a bit on the drug as I am curious. You probably already know all that I am going to say - but I will share anyway :D
Azathioprine is an Immunosupressive... therefore comprises your body's ability to ward/fight off infection. This in itself can be a problem. In Crohn's disease, it can take up to six months, or more, to see results from azathioprine. Side effects include reduced appetite and nausea, sometimes vomiting, and canker sores in the mouth. A serious (and life threatening) side effect is reduced activity of bone marrow, but this can be monitored with regular blood tests. As well, users should watch for unusual bleeding and/or bruising. Some people may develop pancreatitis (inflammation of the pancreas) some months after starting these drugs.
After reading all of that... and more... in my opinion I think I would skeptical on starting this drug. Yes, it can be monitored... but how quickly will the monitoring pick up on any damages... and how quickly can they be reversed (ie bone marrow)?
Six months is a long time as well. You already have a stricture... and if it takes this drug the six months to take full effect... how much will your stricture be progressed? I would want my consultant to answer this for me.
Apparently, the 5 ASA's work very well, but only in large doses. I think I read 4 to 4.8 grams a day - that equates to 12 pills of Asacol or 16 pills of pentasa... were you taking this high a dose? I believe you are way past this point... but thought it was very interesting when I read that. It's from a lecture by David Sachar, Professor Emeritus, Gastoenterology Division, Mount Sinai Medical Center, New York, NY.
There is a really good MSN group - Crohn's Disease in the UK .... have you found this one? I googled "aziathioprine side effects" and found it that way.
I know none of what I said is really what you are looking for. Nothing can replace a person's personal expereince story. But I just wanted to share my thoughts on it. I know you probably are fully aware of everything I said...
Cheers
Angela
Sharon76
05-31-2006, 11:05 AM
Hi Anglea
Actually i havent researched the drug yet so im grateful for that. I spoke to soon the other day when i said i was ok...............i had a bad flare up yesterday, trying to get on top of it.......had no sleep coz of the pain and nothing to eat for two days!!!
Anyway, i'm abit unsure myself about this drug, it can do alot of damage and is this damage irreversible??? that is what worries me. I have been told by my consultant that at the the moment they have a trial and it where its a special blood test to see if this drug will mess up your bone marrow, apparently it tests your bone marrow and gives a percentage of how likely you are to suffer from bone morrow problems if you go on this drug. And they do this before you go on the actual drug. Saying this i'm still unsure.
my meds have been changed to Pentasa........a really high dose, im on 2000mg daily and im on 15mg prednisolone, along with antibiotics. Im feeling pretty crap at the mo coz of the side effects . They wont give me pain relief as it will aggravate my stomach and bowel more, so they are waiting to see if my meds will work again.
I just want the bad part removed and then i can start a fresh with this illness.
I dont know anymore what will help, i really thought the meds would once i started on them, but its as if my body has got used to them and they are no longer working. But saying that once these new tablets are in my system they may work.
Actually i havent researched the drug yet so im grateful for that. I spoke to soon the other day when i said i was ok...............i had a bad flare up yesterday, trying to get on top of it.......had no sleep coz of the pain and nothing to eat for two days!!!
Anyway, i'm abit unsure myself about this drug, it can do alot of damage and is this damage irreversible??? that is what worries me. I have been told by my consultant that at the the moment they have a trial and it where its a special blood test to see if this drug will mess up your bone marrow, apparently it tests your bone marrow and gives a percentage of how likely you are to suffer from bone morrow problems if you go on this drug. And they do this before you go on the actual drug. Saying this i'm still unsure.
my meds have been changed to Pentasa........a really high dose, im on 2000mg daily and im on 15mg prednisolone, along with antibiotics. Im feeling pretty crap at the mo coz of the side effects . They wont give me pain relief as it will aggravate my stomach and bowel more, so they are waiting to see if my meds will work again.
I just want the bad part removed and then i can start a fresh with this illness.
I dont know anymore what will help, i really thought the meds would once i started on them, but its as if my body has got used to them and they are no longer working. But saying that once these new tablets are in my system they may work.
Angela22F
05-31-2006, 03:12 PM
Hi Sharon - Just a thought....
Do you think you could handle in increase in pentasa? According to what I read you are only taking half of the recommended effective dose. Maybe an increase would help you??? I find it weird how the list of side effects for Pentasa are somewhat parallel to those of the Crohn's... the pain, diarrhea, joint pain, and so on... seems contradictory to me, to give a medicine that can cause what they're trying to help.
I hope this settles for you. Hang in there. These decisions are always so difficult, do what you feel is best for you. If you are managing without the azathioprine - maybe the risks will be just not worth it... but only you will know if it is.
Angela
Do you think you could handle in increase in pentasa? According to what I read you are only taking half of the recommended effective dose. Maybe an increase would help you??? I find it weird how the list of side effects for Pentasa are somewhat parallel to those of the Crohn's... the pain, diarrhea, joint pain, and so on... seems contradictory to me, to give a medicine that can cause what they're trying to help.
I hope this settles for you. Hang in there. These decisions are always so difficult, do what you feel is best for you. If you are managing without the azathioprine - maybe the risks will be just not worth it... but only you will know if it is.
Angela
Sharon76
06-01-2006, 06:21 AM
I got it wrong, i'm actually on 4000mg of pentasa daily, which is the higher dose i think.
Also i have just found some interesting info on crohn's.
Apparently there is a bacteria that is present in cows called MAP, this has the same symptoms in cows as people with regards to crohn's. A study has been done with lots of research and this bacteria can be passed along to humans by infected milk from cows. Apparently the level that they pasturise milk at is not high enough to kill this bug. And it can also be passed along from meat by cows. The disease in cows is know as johnes disease. But the worrying thing is this MAP bug is also present in the environment!!! It can also be carried in water.
Whilst doing this research they also discovered that alot of people with crohns had this MAp bug in their system.
But saying this the researchers cannot say that this is the sole cause of crohns in humans, there are many other factors which can cause it. At the moment scientists are working on a vaccine for crohns and hopefully get rid of this bug which is contributing to crohns.
I found this interesting.
Also i have just found some interesting info on crohn's.
Apparently there is a bacteria that is present in cows called MAP, this has the same symptoms in cows as people with regards to crohn's. A study has been done with lots of research and this bacteria can be passed along to humans by infected milk from cows. Apparently the level that they pasturise milk at is not high enough to kill this bug. And it can also be passed along from meat by cows. The disease in cows is know as johnes disease. But the worrying thing is this MAP bug is also present in the environment!!! It can also be carried in water.
Whilst doing this research they also discovered that alot of people with crohns had this MAp bug in their system.
But saying this the researchers cannot say that this is the sole cause of crohns in humans, there are many other factors which can cause it. At the moment scientists are working on a vaccine for crohns and hopefully get rid of this bug which is contributing to crohns.
I found this interesting.
Angela22F
06-01-2006, 07:40 AM
I read something similar while researching yesterday. It is very interesting indeed. Makes ya wonder.
Alot of people with Crohn's are "lactose" intolerant... is it possible its this MAP bug and not the lactose? Just an idea. I'd like to know what they find in their further studies.
How are you feeling today? (And I figured a bump would be nice :) Hoping someone still has some info on the azathioprine... Have you made any further decision?)
Angela
Alot of people with Crohn's are "lactose" intolerant... is it possible its this MAP bug and not the lactose? Just an idea. I'd like to know what they find in their further studies.
How are you feeling today? (And I figured a bump would be nice :) Hoping someone still has some info on the azathioprine... Have you made any further decision?)
Angela
mfife31
06-02-2006, 12:31 AM
Well my son has autoimmune hepatitis and has been on 6-mp since dec '05.What he is on(6-mp), is what azathiprine(or Imuran)(Its the brand name of aza)turns into once you take it. From what I have learned is that they check your metabolites for this drug before you take it (TPMP level)to see how low of a dose to start it,Then his levels are checked once a month. Actually his were way too high for a couple of months and had to lower his dose.This drug helps to put you on a lower dose of steroids(called also a steroid sparing drug).It does take a couple of months to begin to work effectively, that is why they usually start with steroids and the Imuran, then taper the steroids down.Hope that helps some! You may want to check out Prometheus labs website, It is the lab that tests the metabolite levels.
mfife31
mfife31
Sharon76
06-02-2006, 12:23 PM
Hi Mfife
HAs your son had any bad side effects or problems since being on them?
HAs your son had any bad side effects or problems since being on them?
mfife31
06-02-2006, 11:57 PM
Hi! Actually we havent really noticed any so far.The only time we did was when the metabolite of the drug got too high.. then his bilirubin went to 4.5 his platelets dropped slightly to 110. But as far as how he felt no. And once it was reduced , the blood labs went back to normal. Good luck to you!! I am a member of autoimmune hepatitis group and there is alot of info about the azathioprine. There are quite a few there who take it.
Mfife31
Mfife31