? Drug reaction to Pentasa/Budesonide

[Gabes-Apg]

Kate
if you have been gluten free and had limited success, that highlights you have other major triggers
Majority of people here have multiple major triggers.
For some they are not able to do a miniscule ion of dairy. not even the small amount of lactose in a medication.
for others it is Eggs or Soy. As i mentioned earlier, if you remove the common major triggers, get the gut settled, it wont take long to confirm what the issues are

Great news that you are feeling better, having some of the mystery of MC become clear would be helping.

there are some good articles / research on this site, if you want to take copies with you to your GP.
(Some here have even purchased extra copies of Tex's book and given it to their GP and/or GI)

Further, also on here is a fantastic resource of research articles about Mast Cells/Histamines. Like MC, this is an area that is clouded with lots of unknowns and most med professionals avoid. Generally it is only allergists/immunologists that are fully aware about mast cells/histamines. I would estimate that at one stage or another 75% of MC'ers have issues with Mast Cell/histamine. Its not a "if it happens", it is a "when it happens".

[Kate]

Hi Gabes,
I have just been reading up on mast cells. It's interesting as I have eczema, generally itchy skin etc and it seems to be worse when the gut is worse. I had been taking anti-histamines for ages but they don't seem to help either at all. Steroids so far are the shizzle! Until I figure out the rest. I have a suspicion that dairy and maybe eggs aren't my friends too. I know dairy upsets my tum a bit.
Interestingly I was breast fed until I was 3 months and Mum just remembered she put me on a soy based formula (cause I had eczema) and that's when my tum started turning a git gnarly. Maybe I'll eat cardboard boxes instead, may be better digested than food! :)
You need to be a detective to work these things out eh. At least the physiology is interesting!
Thanks again,
Will keep reading on :)
Kate

[Gabes-Apg]

wow!! the answers are starting to come! if we fix the gut ( minimise/eliminate the inflammation), the rest of the body will improve
Keep in mind that Dairy is a huge irritant to anyone with gut inflammation.

NB - my mum had measles and blood poisioning when pregnant with me, so my gut microbes were tainted from the beginning
that mixed with Celiac genes.

there was a post in the past couple of months ( i am trying to find it) it said those with intense histamine issues, the normal dosage was not enough
found it http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

if you have some brain cells spare - this is a very good discussion
http://www.perskyfarms.com/phpBB2/viewt ... 52&start=0

[Gabes-Apg]

http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

[Gabes-Apg]

Another one to ponder

http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

[Gabes-Apg]

Have you ever had EPV, Glandular Fever?
another piece to the MC puzzle......

http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

[Gabes-Apg]

http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

http://www.perskyfarms.com/phpBB2/viewt ... =mast+cell

[Gabes-Apg]

last one!
http://www.perskyfarms.com/phpBB2/viewt ... l&start=15

[tex]

The immunologist ordered that as a blood test but I assume that doesn't probably show the same thing.

Yes, immunologists/allergists use that blood test when trying to diagnose or rule out systemic mastocytosis, or mast cell activation disorder (MCAD). Allergic reactions are marked by massive mast cell degranulation, releasing large amounts of histamine and other pro-inflammatory agents into the bloodstream. There is no practical test available for detecting histamine levels in the blood, but we know that when histamine is released, proportionately large amounts of tryptase enzyme are also released at the same time. So doctors measure tryptase levels as a roundabout way to approximate histamine levels.

But the problem is, and apparently most doctors don't seem to adequately understand this (at least they don't seem to appreciate its significance), tryptase levels rise rapidly and peak approximately 2 hours after a mast cell event is initiated, and then they decline, also somewhat rapidly. By contrast, histamine levels rise much faster, and they can take much longer to decay (days or weeks, rather than just a few hours).

Far too many doctors check a patient's tryptase enzyme level, find it to be normal, and declare that the patient does not have a mast cell problem. Of course, the problem is that the doctor failed to draw a blood sample during the narrow window of opportunity when she/he could have obtained a sample that would have yielded a positive test result (by showing an elevated tryptase level).

I'll make you a GF pav Gabes, and you too Tex if you come over!!

Thanks. That would be a looooooooooooooonnnnnnnng trip for me. I do appreciate the kind offer though.

Tex

[ponywoman]

Kate, I'm brand new here but am wondering if you ever got off the Pentasa? I "came down" with collagenous colitis last April 2014-- a severe case of which I'll skip the details except to say that I went from 95# down to 70# in about 3 weeks during which my big city gastroenterologist's office would not prescribe a thing to help me. The P.A. kept telling me to chew a couple of pepto-bismul but I kept telling the office I was DRINKING a bottle of the vile stuff daily with no beneficial results. They finally prescribed Apriso for me which is another brand name like Pentasa for mesalamine. The Apriso helped little & after ending up in the ER in Oct 2014, the GI Doc finally prescribed Budesonide. Helped immensely but even its benefits have worn off with time. Trying to ease off the budesonide brings on even worse colitis...Keep adding more health supplements I research & have been good for 2 weeks now on the colitis front.

Your original posting caught my eye because around the 1st of June 2015, I suddenly "got" 100% of myasthenia gravis symptoms-- couldn't swallow,chew,breath, weak eye, skeletal muscles weak, numb & any leg or arm movement felt like swimming thru quicksand! I couldn't rise up off the bed, toilet,chair. Rheumatoid Arthritis for 40+ yrs had destroyed my joints & now my muscles were worthless. Not fair! BUT I ALSO GOT A RASH on top of my non-working thigh muscles, around my groin & creeping up the sides of my belly. Very even red dots kinda like measles. This looked like a drug allergy to me so research told me that the sulfa family of drugs were the worst offenders in this department. I'd gone from taking the Apriso & had recently been taking sufasalazine-- both sulfa drugs. I immediately quit that drug & some others & the rash quickly disappeared but the muscle problem didn't improve. I had to go up to taking 35mg of prednisone daily just so I could eat & get up & down. 3 months later I'm about 50% improved but after 25 doctor visits or more, I still have no diagnosis. Yesterday I was at last able to get outside & work some with my many potted plants on our large patio-- plants my poor husband has been trying to care for. Had not been able to make it to the garden & it failed for the first time under his care. Haven't been to any of our 4 horse barns which is essentially the end of my life because that is what I have always done: show, ride & raise many appaloosa horses. (When I got colitis, I had to quit going to stores & my husband still does all the shopping now but what the heck, we've just been married 50 yrs so its his turn to grocery shop!)

I still have fairly bad ataxia which is what we call it in horse diseases so I recognize it in myself. In horses its also called "wobbles". And thats what I now have & have to be so careful, especially outside, as I wobble & have poor balance. Did you have ataxia when you had joint problems, Kate?

Tex, I believe it was you that mentioned something about these doctors continuing to do test after test even after one is diagnosed with microscopic colitis! My colonoscopy last April 2014 confirmed my collagenous colitis but I had the P.A. tell me a month later that I shouldn't still be having colitis! She kept pushing the P.P.I.'s on me even tho she knew that one Nexium pill & I'd lose another 10# due to colitis caused water loss. And had an ultrasound on my pancreas, gall bladder & liver via an endoscope exam just last week & they named off 2 more tests they wanted (which I didn't schedule) & I've refused an MRI (I just had a cat scan). And the blood tests they ordered-- even the Hospital didn't recognize what they were for but I looked them up later & there were 5 for celiac disease of which the research said most of these tests were obsolete!

So if anyone else has had muscle or joint problems while on sulfa drugs like Pentasa, Apriso, sulfasalazine please let me know! Thanks so much for listening, Ponywoman

As a P.S., as much prednisone as I take one would think that weaning off Budesonide would be easy but I get down do 1 cap instead of 2 that my script is for now, and the colitis "explodes" so to speak.

[tex]

Your original posting caught my eye because around the 1st of June 2015, I suddenly "got" 100% of myasthenia gravis symptoms-- couldn't swallow,chew,breath, weak eye, skeletal muscles weak, numb & any leg or arm movement felt like swimming thru quicksand!

Hi,

Welcome to the discussion board. I recognize your description of those symptoms, because I had a similar reaction about 6 months ago, also triggered by a med, but not mesalamine. In my case it also caused my heart rate to almost double, and sometimes my blood pressure would be way too low, and at other times it would be way too high. My body also couldn't properly regulate its temperature, and I would have periods of intense sweating. A number of medications can trigger this type of reaction, and it's completely off the radar of virtually every medical professional we are likely to encounter (because they are not trained to recognize it). In my case it was triggered by an antibiotic. I even went so far as to ask my doctor to test me for myasthenia gravis (mostly because my breathing was weak and shallow, and I couldn't take a deep breath — as if my diaphragm was weak). And this was a month or so before the antibiotic caused the problem to become acute. I felt as though I had asthma, except that there was no wheezing. I just couldn't breathe air in very well — as of my diaphragm muscle was weak, or the nerves were not able to control it properly.

The problem was magnesium deficiency. I had apparently been deficient for many years (in the muscle cells of my body), but as long as there is any magnesium left anywhere in the cells of the body, the system will draw that magnesium into the blood, and continue to function pretty much normally. The anesthetic finished depleting my magnesium reserves in my cells, and so then my blood level became too low. Magnesium is a critical electrolyte, so a deficiency in the blood throws a monkey wrench into the machinery, and the body is unable to properly regulate many vital functions. I was lucky, and I went to the ER, and they happened to test my magnesium level. The result came back flagged as deficient, but the ER docs just ignored it and told me that all my test results were normal. 2 days later, I decided to check my test results online, and sure enough — there was the flagged magnesium deficiency.

I was already taking a magnesium supplement, but I doubled my dose, and in a day or so I was feeling much better. After a few more days, all the symptoms were gone. And after several months, the breathing problem that I had had for over 10 years (not being able to take a deep breath sometimes), was gone. I can breathe normally again now, and my energy and stamina are back. But if I had taken my magnesium supplements that morning before I went to the ER, my test result would have been normal, and I would have never known what was causing the problem. How do I know? Because my symptoms always became severe about 3 to 4 o'clock in the morning — when the supplements that I was taking would be used up. After I ate breakfast (and took my pills) I would feel better, but it never occurred to me that it could be magnesium (until I saw the test result), because I was already taking a supplement.

Tex, I believe it was you that mentioned something about these doctors continuing to do test after test even after one is diagnosed with microscopic colitis! My colonoscopy last April 2014 confirmed my collagenous colitis but I had the P.A. tell me a month later that I shouldn't still be having colitis! She kept pushing the P.P.I.'s on me even tho she knew that one Nexium pill & I'd lose another 10# due to colitis caused water loss.

Wow! That P. A. is totally lost. Obviously she doesn't realize that a diagnosis of CC is for life, and PPIs are verboten for anyone who has CC.

As a P.S., as much prednisone as I take one would think that weaning off Budesonide would be easy but I get down do 1 cap instead of 2 that my script is for now, and the colitis "explodes" so to speak.

Research shows that when the genes that predispose to MC/CC/LC are triggered, the genes that predispose to gluten sensitivity are also triggered, resulting in increased intestinal permeability, which leads to additional food sensitivities as the increased permeability allows undigested peptide chains to leak into the bloodstream and provoke the immune system to produce antibodies against them. These antibodies result in the proliferation of T-cell inflammation that causes MC/CC/LC. As long as the offending foods remain in the diet, the inflammatory reaction is perpetuated. Every time we eat, new inflammation is generated. That's why we relapse every time we try to wean off a corticosteroid (unless we correct our diet about 6 months or more before we wean off the medication).

Therefore, we control our symptoms by totally avoiding all traces of the foods that cause us to produce antibodies, and this allows our intestines to heal, and the symptoms will stop. Not only that, but many of us who had other AI issues find that our other AI issues resolve in response to the diet changes. 15 years ago, I had arthritis so bad that I often had to use a cane just to get around. I have no arthritis symptoms these days.

Again, welcome aboard, and please feel free to ask anything.

Tex

[ponywoman]

Hi Tex, mucho thanks for your interesting reply. I take a lot of vitamins/supplements so know about magnesium-- as you apparently did too as you said you were taking magnesium & still had deficiency symptoms. I always check my labs taken at various docs offices & magnesium & calcium are always normal as is vit D,etc as some of these I especially watch because of my RA + thinning bone. I can only supplement with 1 magnesium pill of the common strength of 400mg because magnesium has a known reputation of causing loose stools... an effect I don't need with this colitis problem of mine!

Yes, even tho my GI doc diagnoses MC upon colonoscopy examination, plus CTscan, the office is immediately saying I should not have MC anymore & make me get a C.Diff test! (I did have c.diff. 20 yrs ago as I raised an average of 10 appaloosa foals every yr for 45 yrs & the newborn foals all get diarrhea at 9 days old & carry c.diff...That was my source or it was my visit to a hospital to visit my husband who had rotator cuff surgery.) They make me get a c.diff test about every time I call in for a script refill altho I haven't been shopping in a store or around kids since being diagnosed with MC last year. My only source would be a doctors office...I guess. Can't even go outside to one of my 4 horse barns due to this new myasthenia gravis like thingy I have. And no more foals since my health went south 3 yrs ago. I honestly feel that the c.diff testing which is out of hand is pure meaness. They also test for many other diarrhea causing agents at the same time. I do have 100% of collogenous colitis classic symptoms so wonder why they keep up the testing after diagnosing me for same. Strange. Thanks Tex for yor wonderful response! Ponywoman