path to take?

[tex]

Shona,

Usually, once the symptoms go away, and the gut has a little time to begin healing, most people will begin to gain their weight back. Also, Entocort EC causes many people to gain weight, because it apparently stimulates the appetite for some individuals.

That sounds like a good choice for the test selections. The lab used to keep samples for over a year, in case a client wanted to order additional tests, at a later date. Since that requires a lot of freezer space, as their tests became more popular, they eventually had to discontinue that practice, and I don't recall how long they keep samples now, but it is more like a month or so, at most, I believe. Maybe someone else here knows how long them keep them.

FWIW, a negative celiac blood test says nothing about someone's genes. A celiac blood test will only be positive if a patient has fully-developed celiac disease. The celiac blood tests have such poor sensitivity that it often takes several years after gluten-sensitivity is triggered, (several years of symptoms), before enough damage is accumulated in the gut, to release sufficient antibodies into the blood stream, to yield a positive test result. On the other hand, the stool tests at Enterolab are so sensitive that they will detect antibodies in the stool, as soon as symptoms are apparent. Many doctors mistakenly believe that a negative blood test result means that a patient will never develop celiac disesase, but that is incorrect. Celiac disease can progress to the fully-developed state at any time of life, regardless of how many blood tests might have been negative, prior to that.

Good luck with the tests. If you would like to see how some of our test results turned out, you can see them here, (the HLA-DQ numbers are DNA gene test results, taken from a cheek swab):

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

Tex

[shona]

I've ordered the gluten, milk & soy tests and also found a courier who can do 2 day delivery for $66 (FedEx)

Her negative celiac blood test was done several years into the symptoms, but I'll keep it in mind that it may develop later on.

I guess if the Enterolab gluten stool test is positive, the GF diet she needs to go on is the treatment for celiac anyway.

Here is some info from my mum about her reaction to Questran (it was quite long so I've summarised & copy/pasted the main parts here)

Tuesday PM - started Flagyl (3 pills per day for 7 days) + Questran (1 per day)
Friday - GP appointment. quite fatigued, itchy skin/unsettled, couldnt get warm, appetite decreased,
Saturday PM - nausea, violent vomiting, urgent D (more so than normal), " world disappeared, basically sitting there was a sphere, colourful at that, appeared, and I could not even see my hand in front of me. I could see ABSOLUTELY NOTHING, there was nothing to see except this blob...now I am scared. So cold in self, head so hot to touch it burnt, but with shivering I just wanted to lie down"

Several people (including myself) tried phoning dozens of times when she was asleep but she didn't hear any of it for hours. She stopped taking the drugs and felt human again around Monday.

About a month later her GI put her on Salazopyrin (Sulfasalazine), she stopped after 9 days as she had more than half of the listed reactions (not quite as bad as the Questran but still not nice).

[tex]

Wow! That was an extremely bad reaction. I'm sorry that she had to go through that.

Her doctor should have prescribed mesalamine, instead of sulfasalazine. Many people react to sulfasalazine - that's why mesalamine was developed. The body breaks sulfasalazine down to 5-aminosalicylic acid (5-ASA), and sulfapyridine. The 5-ASA component is also known as mesalamine, and this is the useful ingredient. Sulfapyradine is useful to treat arthritis, but unfortunately, many people suffer adverse reactions to it, because it is a sulfa-based drug.

Tex

[Robbie]

How awful. And scary!

[Gloria]

What a terrible reaction! That must have been pretty scary. I hope you get some helpful feedback from Enterolab.

Gloria

[shona]

Her GI appointment to get the Entocort prescription was earlier this week - he said he wouldn't give it to her because it is too expensive

While I can understand a doctor wanting to inform a patient of cost & give them options, I don't think they have the right to make medical decisions based on cost.

Instead he gave her a script for Prednisolone - half a 25mg tablet each day for 2 weeks.

I was so angry I rang his office and left a message asking the GI to call me - I was ready to get into a debate to convince him to write the Entocort script, but the receptionist rang me back and said that the GI "was willing to try Entocort next if the Pred didn't work". Just so frustrating that he wouldn't try Entocort first as he should know from 5 minutes on Google that it's the most successful drug for CC, AND less harmful long term.

I was happy to accept that decision though, as I've read some accounts of Pred working to START remission. It seems like he is similar to most GIs out there, in that he thinks a few weeks of the drug will cure the CC (as he knows you can't take pred long term).

On the plus side, when mum spoke to the GI about gluten, he did say it was possible she had a "gluten intolerance" even though she tested negative for celiacs.

She's been on the pred for around 2 days, and it has definitely helped so I'm keeping all fingers crossed.

I'm flying over to visit her in about a week so we should have the Enterolab test kit by then, and I'll give her lots of info on GF if the test results show she needs to go GF.

The Pred script is for 2 weeks and from everything I've read it seems extremely likely that as soon as she stops taking it, the symptoms will come back. I don't think I'll be able to convince the GI to give her to Entocort script straight away (he'll want to wait until the symptoms come back), but at least it will only be a few weeks gap. If he makes her wait any longer I'll be on the phone to him again!!

[ant]

Dear Shona

You are a perfect daughter; a quick learner; a fighter; a 'knightess' in shining armor....

Keep challenging the 'system'. It - unlike you - seems to have lost its heart (and its brain also). I am in awe...

Best, ant

[starfire]

I agree........ It is awesome that your Mom has you fighting for her.

Love, Shirley

[wonderwoman]

If an Entocort RX prooves to be too expensive here, it can be ordered from a foreign pharmacy for $60. for a one month supply and you get it in two weeks. I did this and was very happy.

[tex]

Shona,

I believe you've sized up the situation quite correctly. Prednisone is very effective for controlling the symptoms of CC - the problem is that it can only be used on a short-term basis. That doctor seems very naive to insist on a prednisone treatment before prescribing Entocort, but it's possible that your country's health care system regulations may require that protocol, (or the insurance underwriters, if they're involved).

Good for you, for staying on top of this. Hopefully, your mother will get another week or two of relief after the prednisone treatment ends, before the symptoms return. It's a shame that the doctor will insist on waiting for the symptoms to resume, before writing the prescription for Entocort, but that's the way doctors are trained, unfortunately. They're trained to treat symptoms after they appear - they're not trained to prevent the symptoms from appearing in the first place.

Tex

[shona]

Thanks for the support guys :)

will keep posting updates and will definitely be looking into oversea ordering

[Gabes-Apg]

i can feel your frustration (as many of us have) that the medical system can be so limiting and 'cruel'

your mum is very blessed to have you as her 'knightess' quite a few of us have battled these situations on our own (that is until we find this website and these wonderful people)

hope your mum starts to feel well soon

take care

[shona]

hi guys, just a quick update

The pred worked absolute wonders, I'd say she was 95% back to normal, which was great to see.

Her 2 week course of pred finished about a week ago, only a slight increase in symptoms in the last couple of days (eg afternoon BM where she wouldnt normally have one).

Her GI appointment was today. Remember the GI had promised me he would "try Entocort next if the pred didn't work" - well now he is claiming it would be illegal for him to give out the Entocort script because the clinical notes for the drug say it is used for Crohns not CC.
He said he didn't want to put his name on the script as if something bad happened the medical files don't support his decision for prescribing that drug (ie. because her files don't say she has Crohns)

I found this quote from Liz (also in Queensland) and I suspect all he was talking about is off-label use which I really doubt is "illegal" here, but I will double check that.

the new one I saw told me it was only used for Crones disease. Then he found out he was wrong.

http://www.perskyfarms.com/phpBB2/viewt ... 8583#48583

Instead the GI has put her back on pred. 12.5mg for 1 week, then 10mg for 2 weeks, 7.5mg for 2 weeks, 5mg for 2 weeks, 2.5mg for 1 week, then 1mg for 1 week.

He told her Entocort is a much stronger drug, more side effects, etc. compared to pred #$%#!

Meanwhile I sent her sample off to Enterolab today (for any Australians reading, I ended up using Pack n Send couriers $75 two-business-day service)

I can't find any information on what "long term" means for pred use - should I be worried about this 2 month course? If "long term" means years I will probably just let it go for now, and be grateful that pred controls the symptoms while we wait for the Enterolab results (and get the GF diet underway if needed)

If 2 months is starting to be harmful, I am either going to gather up all the references I have and send them to him to try and get the Entocort script, or I will somehow organise the script through another GI (this will be hard as there is only 1 in her city)

[Joefnh]

Hi Shona, I am really sorry about the hard time that the doctor is giving you. First that is a very low dose pf prednisone and I doubt that at that dose that there would be any problems.

To put things in perspective, the standard dose of 9mg of Entocort is roughly equal to 15mg of prednisone and many stay on Entocort for many months. While not an ideal long term med, I would not be concerned with a couple of months of prednisone use at those low doses.

I am surprised that he made those statements about Entocort. It is by far safer than prednisone. While I do not know Aussie prescribing laws, I would imagine off label use is allowed there as well, as that is how meds are used most of the time anyway.

Can you print out some of the articles form this site, or any of the medical studies regarding the use of Entocort with CC? I don't have those at hand, but could get some together if you think it would help.

Certainly getting the Enterolab results will be quite helpful.

No matter what meds that she is on, the diet will be KEY. Overall the GF/DF/SF diet will be at least as important as any medication that is prescribed. The diet can be fine tuned once the Enterolab results come in.

It sounds like you are on the right path with the testing, although long term a different doc might be in order

Best wishes

--Joe

[tex]

Shona,

What a disappointment. In a word, that GI doc is "Ignorant". Apparently he doesn't bother to keep up with current treatments for GI diseases. I suppose he figures that once he received his certification as a GI "Expert", he no longer needs to learn any new information. I get the impression that the real reason why he is not willing to prescribe Entocort EC, is because of it's cost. He's well aware that it's an expensive drug. Is he paying for the treatment out of his own salary? His stinginess is endangering your mother. Entocort is far, far safer for treating CC on a long term basis. The dosages he has prescribed are relatively low, but prednisolone is a very insidious drug, and should be avoided whenever possible. It's probably impossible to predict the time frame for significant HPA axis issues, because we are all affected differently by the various drugs. If she ends up having to take it for more than two months, though, IMO, you should consider using an alternate day treatment program, to reduce the chances of causing permanent damage to her HPA axis.

Please print out and show him this research article, the title of which is Use of budesonide in the treatment of microscopic colitis:

http://www.saudijgastro.com/article.asp ... ast=Tangri

Budesonide, (as you probably already know, is the active ingredient in Entocort EC. Here is an abstract of another research project recommending budesonide for the treatment of MC, titled Long-term budesonide treatment of collagenous colitis: a randomised, double-blind, placebo-controlled trial. Print out this one also, because since it documents the safety and efficacy of budesonide for long-term treatment of CC, it is an even better reference:

Long-term budesonide treatment of collagenous colitis: a randomised, double-blind, placebo-controlled trial

1. O K Bonderup1,
2. J B Hansen2,
3. P S Teglbjærg3,
4. L A Christensen4,
5. J F Fallingborg2

1. Department of Internal Medicine, Randers Regional Hospital, Randers, Denmark
2. Department of Gastroenterology, Aalborg Hospital, Aalborg, Denmark
3. Institute of Pathology, Aalborg Hospital, Aalborg, Denmark
4. Department of Gastroenterology, Århus Hospital, Århus, Denmark

1. Dr O K Bonderup, Department of Internal Medicine, Randers Regional Hospital, Skovlyvej 1, 8900 Randers, Denmark; obo{at}rc.aaa.dk

* Accepted 22 July 2008
* Published Online First 31 July 2008

Abstract

Objective: To evaluate the efficacy and safety of long-term budesonide therapy for the maintenance of clinical remission in patients with collagenous colitis.

Design: Randomised, placebo-controlled study with a 24-week, blinded follow-up period without any treatment.

Setting: Three gastroenterology clinics in Denmark.

Patients: Forty-two patients with histologically confirmed collagenous colitis and diarrhoea (more than three stools/day).

Interventions: Patients in clinical remission after 6 weeks’ open-label therapy with oral budesonide (Entocort CIR capsules, 9 mg/day) received 24 weeks’ double-blind maintenance therapy with budesonide 6 mg/day or placebo. Thereafter, patients entered the 24-week, blinded follow-up period.

Main Outcome Measure: The proportion of patients in clinical remission (three or fewer stools/day) at the end of maintenance therapy.

Findings: A total of 34 patients in remission at week 6 were randomly assigned to budesonide 6 mg/day (n  =  17) or placebo (n  =  17). After 24 weeks’ maintenance treatment, the proportions of patients in clinical remission were 76.5% (13 of 17) with budesonide and 12% (2 of 17) with placebo (p<0.001). At 48 weeks (the end of the follow-up period, without any treatment) these values were 23.5% (4 of 17) and 12% (2 of 17), respectively (p = 0.6). The median times to relapse after stopping active treatment (6 plus 24 weeks in the budesonide group; 6 weeks in the placebo group) were 39 and 38 days, respectively. Long-term treatment with budesonide was well tolerated.

Conclusions: Long-term maintenance therapy with oral budesonide is efficacious and well tolerated for preventing relapse in patients with collagenous colitis. The risk of relapse after 24 weeks’ maintenance treatment is similar to that observed after 6 weeks’ induction therapy.

http://gut.bmj.com/content/58/1/68.abstract

That should blow his ridiculous argument out of the water. If you need more data, please ask, because there are plenty more references available.

The other option, of course, is to eschew the health care system, (and their stingy behaviour), and order a generic form of budesonide from an online pharmacy. Many of our members do that, because they can't afford the price in this country. The cost of a one-month supply is about $40.50, in USD, plus shipping expenses. You don't need a prescription when ordering from a foreign pharmacy, because prescriptions are only valid in the country where they are written.

https://www.alldaychemist.com/1283_Entocort-EC

Tex