Hi guys,
Just wondering if anyone has had issues with Pentasa causing joint pain? I have been on budesonide 7 weeks and started tapering last week so perhaps it's due to that too?
Have pain in fingers and toes sometimes on awakening but mooderate pain in right knee which has now spread to the left. I read Pentasa can cause 'Lupus like' symptoms. I've also had chest pain - ? GI which has resolved this week and had a viral infection with a mild temp and aches/sore throat - wondering if this was actually related to my medications...
Any experience appreciated. Will go see GP next week...
BTW I usually run but haven't the last 3 weeks as I've been sick on and off so can't blame my knees on that! ;) Feel like my body just seriously out of whack! Need to get active again!
best regards,
Kate
? Drug reaction to Pentasa/Budesonide
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Kate,
I don't have any experience with Pentasa, but the active ingredient in Pentasa is melalamine, and one of the most common side effects of mesalamine is listed as:
I don't know about Aus, but even though it's summer here in the States, there are some viruses making the rounds, so you may have been hit with a double whammy.
Hopefully next week will be much kinder to you.
Tex
I don't have any experience with Pentasa, but the active ingredient in Pentasa is melalamine, and one of the most common side effects of mesalamine is listed as:
http://www.nlm.nih.gov/medlineplus/drug ... 88021.htmlmuscle or joint pain, aching, tightness or stiffness
I don't know about Aus, but even though it's summer here in the States, there are some viruses making the rounds, so you may have been hit with a double whammy.
Hopefully next week will be much kinder to you.
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.
Hey Tex
Thanks for the speedy replies! Much appreciated.
Yeah I think it may be a bit of both. Tempted to stop the Pentasa but will wait till next week, seeing GI. I don't think it's the Budesonide wean - but hard to know when you're taking 2 meds with similar potential side effects.
I have had to take ibuprofen as couldn't walk properly this morning! I know that's a bit of a 'no no' but haven't noticed any adverse effects.
Thanks again and have a great weekend :)
Em
Thanks for the speedy replies! Much appreciated.
Yeah I think it may be a bit of both. Tempted to stop the Pentasa but will wait till next week, seeing GI. I don't think it's the Budesonide wean - but hard to know when you're taking 2 meds with similar potential side effects.
I have had to take ibuprofen as couldn't walk properly this morning! I know that's a bit of a 'no no' but haven't noticed any adverse effects.
Thanks again and have a great weekend :)
Em
Oops! 
It just dawned on me that I mistakenly located you in Australia in my last post. My apologies. Both countries are about as far away from Texas as anyone can get, so they're kind of a blur to me from here. LOL.
Not all of us react to NSAIDs, but do try to get by with as little as possible, because a sensitivity to them usually develops with repeated usage, or regular usage, or high dosage rates. IOW, the more you use, the more likely you are to become sensitive to them, and the sooner you are likely to become sensitive to them.
I can recall at least one member here who reported significant withdrawal symptoms when weaning off budesonide, every time she lowered the dose. But for most of us, if we are going to have side effects from it, the symptoms usually appear soon after we begin taking it, and they slowly resolve as we wean off it. It's certainly not impossible to have withdrawal symptoms from budesonide though, because prednisone typically causes major withdrawal symptoms. Since the absorption rate of budesonide (in any formulation other than Uceris) into the bloodstream has been found to typically be less than 19 %, the odds of withdrawal symptoms (provided the dose is slowly tapered over a period of several weeks or more) are pretty low. I'm not sure if Uceris or an equivalent product is available in NZ, but the potential absorption rate (into the bloodstream) for Uceris is claimed to be zero, so it shouldn't carry any of the common side effect risks normally associated with withdrawal from corticosteroids.
Thanks, and I hope that you have a very enjoyable weekend, too.
Tex
It just dawned on me that I mistakenly located you in Australia in my last post. My apologies. Both countries are about as far away from Texas as anyone can get, so they're kind of a blur to me from here. LOL.Not all of us react to NSAIDs, but do try to get by with as little as possible, because a sensitivity to them usually develops with repeated usage, or regular usage, or high dosage rates. IOW, the more you use, the more likely you are to become sensitive to them, and the sooner you are likely to become sensitive to them.
I can recall at least one member here who reported significant withdrawal symptoms when weaning off budesonide, every time she lowered the dose. But for most of us, if we are going to have side effects from it, the symptoms usually appear soon after we begin taking it, and they slowly resolve as we wean off it. It's certainly not impossible to have withdrawal symptoms from budesonide though, because prednisone typically causes major withdrawal symptoms. Since the absorption rate of budesonide (in any formulation other than Uceris) into the bloodstream has been found to typically be less than 19 %, the odds of withdrawal symptoms (provided the dose is slowly tapered over a period of several weeks or more) are pretty low. I'm not sure if Uceris or an equivalent product is available in NZ, but the potential absorption rate (into the bloodstream) for Uceris is claimed to be zero, so it shouldn't carry any of the common side effect risks normally associated with withdrawal from corticosteroids.
Thanks, and I hope that you have a very enjoyable weekend, too.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Tex
Australia and New Zealand are like brother/sister type thing! (hence why the flags are similar)
Truth be known, Australia are shockers for claiming famous NZ born musicians / sports people / actors as Aussies (and in the case of Russell Crowe, Aussies are very quick to disown them when they fall from grace!)
The Australia National Football League competition for Rugby League, includes a NZ team.
Kate
there are lots of unknowns in the MC journey. Sometimes it hard to know if a food is causing issues, or a medicine change is causing issues, or if the body is fighting a cold/virus. The symptoms are the pretty much the same.
As time goes on, when the gut/body is less inflamed, life gets a bit easier.
take care
Australia and New Zealand are like brother/sister type thing! (hence why the flags are similar)
Truth be known, Australia are shockers for claiming famous NZ born musicians / sports people / actors as Aussies (and in the case of Russell Crowe, Aussies are very quick to disown them when they fall from grace!)
The Australia National Football League competition for Rugby League, includes a NZ team.
Kate
there are lots of unknowns in the MC journey. Sometimes it hard to know if a food is causing issues, or a medicine change is causing issues, or if the body is fighting a cold/virus. The symptoms are the pretty much the same.
As time goes on, when the gut/body is less inflamed, life gets a bit easier.
take care
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes,
Yep, the flags are what tripped me up.
Thanks for the insight into some of the "arrangements" between the two countries.
Tex
Yep, the flags are what tripped me up.
Thanks for the insight into some of the "arrangements" between the two countries.
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.
Kate,
I was on Uceris for about 2 months. I stopped cold turkey as instructed by my GI and I had joint & muscle aches and 'flu like symptoms' for a few days. They claim it doesn't get into the blood stream, but I have my doubts.
I would expect you to have the aches and pains from reducing the dosage.
I was on Uceris for about 2 months. I stopped cold turkey as instructed by my GI and I had joint & muscle aches and 'flu like symptoms' for a few days. They claim it doesn't get into the blood stream, but I have my doubts.
I would expect you to have the aches and pains from reducing the dosage.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Thanks everyone for the tips!
Just been to see doc (not my usual one) and as it is weekend she won't do any further investigations. I can't actually walk properly my knee is so bad, had hip and ankle pain this morning but that's faded - feel like I am 85 not 35!! lol. She doesn't think my symptoms are due to either med - even though she looked up Pentasa and it had 'lupus like symptoms' as a side effect. My gut feeling - pardon the pun is that it is the pentasa. The taper I did with the budesonide 12 days ago and I agree with her it's probably not that...
I want to stop taking it but struggling with what to do.... as a nurse I'm used to challenging doctors instructions ;) Also I want to think it's a medication reaction and not something else weird going on with my body.
Cheers guys,
Thanks for listening to my rant, sorry to be so high maintenance! I'm not ususally like this!
Kate
Just been to see doc (not my usual one) and as it is weekend she won't do any further investigations. I can't actually walk properly my knee is so bad, had hip and ankle pain this morning but that's faded - feel like I am 85 not 35!! lol. She doesn't think my symptoms are due to either med - even though she looked up Pentasa and it had 'lupus like symptoms' as a side effect. My gut feeling - pardon the pun is that it is the pentasa. The taper I did with the budesonide 12 days ago and I agree with her it's probably not that...
I want to stop taking it but struggling with what to do.... as a nurse I'm used to challenging doctors instructions ;) Also I want to think it's a medication reaction and not something else weird going on with my body.
Cheers guys,
Thanks for listening to my rant, sorry to be so high maintenance! I'm not ususally like this!
Kate
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Kate
you are not being high maintenance, it is frustrating to be feeling poorly, and not know why.
there is also a level of frustration despite your knowledge as a Nurse, there are things out of your control.
Are you taking any supplements?
high doses of Vit D3 will help, so will taking Magnesium. There is a post towards the top of the main message board with information about magnesium, and the conditions linked to Magnesium deficiency. Magnesium spray will help muscle and joints and not cause Diarrhea.
I also found acupuncture was a huge help, it helps reduce the inflammation in the body. It wont take away all the symptoms, but it can reduce them enough to make life easier.
you are not being high maintenance, it is frustrating to be feeling poorly, and not know why.
there is also a level of frustration despite your knowledge as a Nurse, there are things out of your control.
Are you taking any supplements?
high doses of Vit D3 will help, so will taking Magnesium. There is a post towards the top of the main message board with information about magnesium, and the conditions linked to Magnesium deficiency. Magnesium spray will help muscle and joints and not cause Diarrhea.
I also found acupuncture was a huge help, it helps reduce the inflammation in the body. It wont take away all the symptoms, but it can reduce them enough to make life easier.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hey Thanks Aussie Mate :)
I'll have a look at the magnesium thing, I have taken vitamin D in the past but must admit I've slacked off a bit in my vitamins. I'd been feeling so good on the budesonide. Will try be a good girl and stay on the pentasa till Wednesday till I see the GI ;) My GP is amazing - she has IBD and is very understanding so I'll hopefully catch up with her this week. Turing into a real health service consumer!!
Hey, I was wondering how you worked out your food intolerances? Is there a lab in Oz you used or did you go the 'elimination diet' route. I once sent a stool sample to Melbourne years ago (as you do! lol) and had some tests on food intolerances but have since lost the results.
Thanks for your understanding. I'm starting to get sick of Dr's saying 'I don't know'
take care,
Kate :)
I'll have a look at the magnesium thing, I have taken vitamin D in the past but must admit I've slacked off a bit in my vitamins. I'd been feeling so good on the budesonide. Will try be a good girl and stay on the pentasa till Wednesday till I see the GI ;) My GP is amazing - she has IBD and is very understanding so I'll hopefully catch up with her this week. Turing into a real health service consumer!!
Hey, I was wondering how you worked out your food intolerances? Is there a lab in Oz you used or did you go the 'elimination diet' route. I once sent a stool sample to Melbourne years ago (as you do! lol) and had some tests on food intolerances but have since lost the results.
Thanks for your understanding. I'm starting to get sick of Dr's saying 'I don't know'
take care,
Kate :)
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
I had been Gluten Free, Lactose Free, minimal yeast for 9 years or so before the MC Dx
(had IBS my whole life and 3 x bowel obstruction surgeries before age 26)
At the time of Dx, i didnt have the money to do poop intolerance testing, I did eliminiation. The one in Aus, (?melbourne) the test was $900. you can do Enterolab USA from Australia via Fed Ex.
Can you contact the lab, maybe they still have the results on file, worth a try?
Reading the posts on this site, I made sure I was 100% gluten free (double check everything, even herbs/spices etc, make up etc), stopped salad, fruit, nuts, green veges. Took note of items that affect quite a few of the people here, it was easy to test and confirm via the elimination diet
I knew i was ok with home made bone broth (made with lambshanks) and tested each vegetable to get a eating plan with 5-6 safe veges. It didnt take long to confirm yeast as an issue, then caesin.
Once you remove the major triggers, other items become the main trigger. Within a month I knew Soy was an issue.
I was fine with eggs, and well cooked proteins.
it did take a few months. If you remove all the most likely troublemakers, get the gut settled, and then test items.
Once i had a stable eating plan, I stuck with this well cooked, low inflammation, leaky gut healing eating plan, stews/soups etc it may sound boring, and bland, but it works. A scope 2 years later the MC was technically in remission.
For me it is affordable, it meant i was well enough to work, have meals that I could have at lunchtime at work.
Soy was the hardest to eradicate! it is in everything, fruit juices, quite alot of the gluten free products (fresh and packaged) have Soy. turned out I react worse to Soy than Gluten. couldnt even do lipstick that has soy.
I have found a rice protein powder that works for me. there are pea based and hemp based ones on the market as well. They are great for days out / work / eating on the run. Costs about $2-$3 a serve so very affordable.
Since then, I have had contact with practitioners (nutritionists, GP's, Allergiests/Immunologists) that treat people that are difficult to diagnose, had years of health issues etc. The first thing they recommend is Gluten and Dairy Free. They recommend avoiding GMO foods (ie Soy) and stick with low inflammation, leaky gut healing eating plan. Avoid processed foods, Fix the gut, and you can then fix the rest (Immune, adrenal, thyroid, nervous etc) No amount of meds, supps, treatments etc can achieve what following the right diet can do.
highly recommend the Vit D3, the Biocecuticals lingual Vit D3 is the best (absorbed first past not reliant on gut for absorption) You need good levels of Vit D3 in your cells, for other nutrients to be absorbed through the gut.
You are probably aware of other health issues linked to ongoing IBD issues, Vit D3 can minimise this. There are loads of research articles to support this.
of note, MC is quite different to other IBD's. for naturopathic, nutritional, acupuncture, MC didnt respond to treatment protocols the same as UC, Crohns etc.
Good luck with your appointment this week, would be good to get your Vit D3 level checked if she will order the test.
(had IBS my whole life and 3 x bowel obstruction surgeries before age 26)
At the time of Dx, i didnt have the money to do poop intolerance testing, I did eliminiation. The one in Aus, (?melbourne) the test was $900. you can do Enterolab USA from Australia via Fed Ex.
Can you contact the lab, maybe they still have the results on file, worth a try?
Reading the posts on this site, I made sure I was 100% gluten free (double check everything, even herbs/spices etc, make up etc), stopped salad, fruit, nuts, green veges. Took note of items that affect quite a few of the people here, it was easy to test and confirm via the elimination diet
I knew i was ok with home made bone broth (made with lambshanks) and tested each vegetable to get a eating plan with 5-6 safe veges. It didnt take long to confirm yeast as an issue, then caesin.
Once you remove the major triggers, other items become the main trigger. Within a month I knew Soy was an issue.
I was fine with eggs, and well cooked proteins.
it did take a few months. If you remove all the most likely troublemakers, get the gut settled, and then test items.
Once i had a stable eating plan, I stuck with this well cooked, low inflammation, leaky gut healing eating plan, stews/soups etc it may sound boring, and bland, but it works. A scope 2 years later the MC was technically in remission.
For me it is affordable, it meant i was well enough to work, have meals that I could have at lunchtime at work.
Soy was the hardest to eradicate! it is in everything, fruit juices, quite alot of the gluten free products (fresh and packaged) have Soy. turned out I react worse to Soy than Gluten. couldnt even do lipstick that has soy.
I have found a rice protein powder that works for me. there are pea based and hemp based ones on the market as well. They are great for days out / work / eating on the run. Costs about $2-$3 a serve so very affordable.
Since then, I have had contact with practitioners (nutritionists, GP's, Allergiests/Immunologists) that treat people that are difficult to diagnose, had years of health issues etc. The first thing they recommend is Gluten and Dairy Free. They recommend avoiding GMO foods (ie Soy) and stick with low inflammation, leaky gut healing eating plan. Avoid processed foods, Fix the gut, and you can then fix the rest (Immune, adrenal, thyroid, nervous etc) No amount of meds, supps, treatments etc can achieve what following the right diet can do.
highly recommend the Vit D3, the Biocecuticals lingual Vit D3 is the best (absorbed first past not reliant on gut for absorption) You need good levels of Vit D3 in your cells, for other nutrients to be absorbed through the gut.
You are probably aware of other health issues linked to ongoing IBD issues, Vit D3 can minimise this. There are loads of research articles to support this.
of note, MC is quite different to other IBD's. for naturopathic, nutritional, acupuncture, MC didnt respond to treatment protocols the same as UC, Crohns etc.
Good luck with your appointment this week, would be good to get your Vit D3 level checked if she will order the test.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hey Gabes,
Thanks for your big email, much appreciated :)
I have just been to see my lovely (new) GI today. They seem good and efficient with a plan but kind of downplayed my gastroscopy/colonoscopy results - which confused me, as I thought my previous GI regarded them as significant but wasn't sure as to 'why' they were like that. They want me off the steroids, and are thinking of doing a 'pill cam'. That's great, but I don't really see why my current results are not explanation enough. I know they don't really have a diagnosis but I thought microscopic colitis was a condition in and of itself... (ran out of time to ask that question!)
Also, I'm banned off ibuprofen for my new joint pain which may be interesting.
She found some of my immulogy results - high IgE and reaction to wheat and nuts...
Anyways, another rant, Sorry!! Going to see my GP on Friday, hopefully can put the pieces together a bit more.
Just feel upset and angry at the moment as feel like a rat on a wheel. Having a big glass of red wine! lol
Hope you're well and things warmer there in Oz
I owe you a big Pav for listening to me....
Kate :)
Thanks for your big email, much appreciated :)
I have just been to see my lovely (new) GI today. They seem good and efficient with a plan but kind of downplayed my gastroscopy/colonoscopy results - which confused me, as I thought my previous GI regarded them as significant but wasn't sure as to 'why' they were like that. They want me off the steroids, and are thinking of doing a 'pill cam'. That's great, but I don't really see why my current results are not explanation enough. I know they don't really have a diagnosis but I thought microscopic colitis was a condition in and of itself... (ran out of time to ask that question!)
Also, I'm banned off ibuprofen for my new joint pain which may be interesting.
She found some of my immulogy results - high IgE and reaction to wheat and nuts...
Anyways, another rant, Sorry!! Going to see my GP on Friday, hopefully can put the pieces together a bit more.
Just feel upset and angry at the moment as feel like a rat on a wheel. Having a big glass of red wine! lol
Hope you're well and things warmer there in Oz
I owe you a big Pav for listening to me....
Kate :)
Hi Kate,
I don't understand your doctor's attitude either. If she doesn't believe that MC is capable of causing the symptoms that you are having, she obviously doesn't understand the disease.
The pill cam will show nothing new, but it's not as hard on the patient as a colonoscopy, so it shouldn't cause any major risks (unless you happen to have a stenosis somewhere in your intestines, but if that were the case, they should have already discovered it by using imaging methods).
In our experience here on the board, doctors who continue to order tests and search for "the problem" after an MC diagnosis has already been determined, are usually trying to use their patients as guinea pigs, to allow them to learn more about the disease, or so that they can write a research paper, or something of that sort. The doctors benefit from the additional studies, but the patients being studied typically do not, unfortunately.
But at least your doctor's actions suggest that she may actually be interested in learning more about the disease (in contrast to so many GI specialists who couldn't care less about whether or not they ever learn how to properly treat MC).
If your new doctor really wants to get to the bottom of your case, she should request that a pathologist re-stain your previous biopsy sample slides from your colon with a tryptase-based stain, and do a mast cell count to rule out mastocytic enterocolitis. In view of your immunology results showing elevated IgE antibody counts, if I were in your shoes I would request that she do that. It's remotely possible that this might have already been done by your previous doctor, but it's very unlikely, because most pathology labs don't even stock the tryptase-based stain, unless a GI doc orders it when they submit biopsy samples on behalf of a patient.
Please keep us posted.
Tex
I don't understand your doctor's attitude either. If she doesn't believe that MC is capable of causing the symptoms that you are having, she obviously doesn't understand the disease.
The pill cam will show nothing new, but it's not as hard on the patient as a colonoscopy, so it shouldn't cause any major risks (unless you happen to have a stenosis somewhere in your intestines, but if that were the case, they should have already discovered it by using imaging methods).
In our experience here on the board, doctors who continue to order tests and search for "the problem" after an MC diagnosis has already been determined, are usually trying to use their patients as guinea pigs, to allow them to learn more about the disease, or so that they can write a research paper, or something of that sort. The doctors benefit from the additional studies, but the patients being studied typically do not, unfortunately.
But at least your doctor's actions suggest that she may actually be interested in learning more about the disease (in contrast to so many GI specialists who couldn't care less about whether or not they ever learn how to properly treat MC).
If your new doctor really wants to get to the bottom of your case, she should request that a pathologist re-stain your previous biopsy sample slides from your colon with a tryptase-based stain, and do a mast cell count to rule out mastocytic enterocolitis. In view of your immunology results showing elevated IgE antibody counts, if I were in your shoes I would request that she do that. It's remotely possible that this might have already been done by your previous doctor, but it's very unlikely, because most pathology labs don't even stock the tryptase-based stain, unless a GI doc orders it when they submit biopsy samples on behalf of a patient.
Please keep us posted.
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
You are on re the Pav!! we could have a pav cook off! ha ha ha
as tex mentioned, GI that are familiar with MC are limited, to find one that knows about it in depth is rare.
The current published information is inaccurate and not very helpful.
MC is a condition in itself, and it is not the same as other IBD's
The pill cam is good, if you have crohns or UC, (ie issues that are visable to the naked eye) and much better than having another gastroscopy/colonscopy. Albeit the colonscopy has confirmed the MC diagnosis so why go searching for something else. How long ago was the colonscopy that confirmed the MC dx? if the pill cam is going to mean a cost to you, I would rethink it.
Stopping the ibruprofen is a good step, there are a quite a few here that have NSAID triggered MC.
keep expectations realistic for your appointment with the GP. Out of the 11 GP's i have seen since my MC started, only 1 of them had treated another patient that had MC and was familiar. Again the information going to the GP's is not accurate or helpful in them supporting the patient.
most will not acknowledge that joint pain, foggy brain, fatigue, thyroid issues would be linked to an IBD.
Tex mentions the
The results showed Mast Cell activiation - the GI disregarded this as anything of interest.
the disappointing reality is, the current medical system struggles to help people with these type of conditions. Most people on this forum got the most success with the management plan and getting their life back, with "informed self management". review options, figure out what works for you, what your major triggers are. Make the diet changes, lifestyle changes that can get you on the road to wellness.
rant away!! accepting MC into your life can be crappy at times!
as tex mentioned, GI that are familiar with MC are limited, to find one that knows about it in depth is rare.
The current published information is inaccurate and not very helpful.
MC is a condition in itself, and it is not the same as other IBD's
The pill cam is good, if you have crohns or UC, (ie issues that are visable to the naked eye) and much better than having another gastroscopy/colonscopy. Albeit the colonscopy has confirmed the MC diagnosis so why go searching for something else. How long ago was the colonscopy that confirmed the MC dx? if the pill cam is going to mean a cost to you, I would rethink it.
Stopping the ibruprofen is a good step, there are a quite a few here that have NSAID triggered MC.
keep expectations realistic for your appointment with the GP. Out of the 11 GP's i have seen since my MC started, only 1 of them had treated another patient that had MC and was familiar. Again the information going to the GP's is not accurate or helpful in them supporting the patient.
most will not acknowledge that joint pain, foggy brain, fatigue, thyroid issues would be linked to an IBD.
Tex mentions the
I had this done on the samples from my last colonscopy. It is not common practise in Aus, and the GI was a bit miffed that i requested it.previous biopsy sample slides from your colon with a tryptase-based stain, and do a mast cell count to rule out mastocytic enterocolitis
The results showed Mast Cell activiation - the GI disregarded this as anything of interest.
the disappointing reality is, the current medical system struggles to help people with these type of conditions. Most people on this forum got the most success with the management plan and getting their life back, with "informed self management". review options, figure out what works for you, what your major triggers are. Make the diet changes, lifestyle changes that can get you on the road to wellness.
rant away!! accepting MC into your life can be crappy at times!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Tex and Gabes,
Thank you for all the support, I really appreciate it as I would have no idea otherwise! It's interesting you mention the tryptase Tex. The immunologist ordered that as a blood test but I assume that doesn't probably show the same thing. She is really good so I think if I mentioned the tryptase staining thing she would be receptive and I could bypass the GI if necessary.
I emailed my new GI regarding the symptoms and correlation between that and the histology from my endoscopy and haven't heard back yet. I'm not sure she had had a chance to read my notes properly before seeing me so wonder if she didn't see all the histology perhaps? Gabes my gastroscopy/colonoscopy was in May this year. I had a gastroscopy in September 2012 and was diagnosed coeliac at that time... so this was a repeat as I'd been unresponsive to gluten free - in fact worse, and also had negative coeliac antibodies (IgA and IgG). I am going public now so it's all free IF I qualify - as they only give out 50 pill cams a year...
My GP thankfully is fantastic as she has IBD and is understanding and pragmatic regarding the processes and the GI doctors. So hopefully she can offer some perspective for me. She actually listens too!!
I'm feeling better today. Thanks again for all your info, I've got some googling to do :)
I'll make you a GF pav Gabes, and you too Tex if you come over!!
Just as well I didn't throw out my boxes worth of GF food, I have a feeling I may need it again...
Kate
Thank you for all the support, I really appreciate it as I would have no idea otherwise! It's interesting you mention the tryptase Tex. The immunologist ordered that as a blood test but I assume that doesn't probably show the same thing. She is really good so I think if I mentioned the tryptase staining thing she would be receptive and I could bypass the GI if necessary.
I emailed my new GI regarding the symptoms and correlation between that and the histology from my endoscopy and haven't heard back yet. I'm not sure she had had a chance to read my notes properly before seeing me so wonder if she didn't see all the histology perhaps? Gabes my gastroscopy/colonoscopy was in May this year. I had a gastroscopy in September 2012 and was diagnosed coeliac at that time... so this was a repeat as I'd been unresponsive to gluten free - in fact worse, and also had negative coeliac antibodies (IgA and IgG). I am going public now so it's all free IF I qualify - as they only give out 50 pill cams a year...
My GP thankfully is fantastic as she has IBD and is understanding and pragmatic regarding the processes and the GI doctors. So hopefully she can offer some perspective for me. She actually listens too!!
I'm feeling better today. Thanks again for all your info, I've got some googling to do :)
I'll make you a GF pav Gabes, and you too Tex if you come over!!
Just as well I didn't throw out my boxes worth of GF food, I have a feeling I may need it again...
Kate