Tex's book & few questions on relapse

[tex]

This seems to me to highlight one of the major problems with a lot of scientific research. It focuses on the details while ignoring the larger picture. There is of course nothing wrong with this kind of research that looks at minutiae and in fact the scientific method is designed to do just this sort of research. The problem comes when sweeping conclusions are drawn from very targeted research, forgetting, in the words of the song, that the hip bone is connected to the thigh bone
Jean

Exactly. No drug company is going to shoot themselves in the foot by submitting any incriminating evidence to the FDA, unless it is absolutely required for approval of their application, and I can't picture any situation where the FDA would require such information. Most drug trials produce a lot of negative data that the drug companies just ignore when writing the reports that go to the FDA.

Many of them even use a pretrial screening, where any subjects who react adversely to the drug are removed from the cohort before the actual trial begins. That pretty much guarantees that any major adverse reactions during the actual trial will be minimal. Basically, about all that the FDA requires is controlled trial evidence that the product has better efficacy than a placebo, and it doesn't kill or maim more patients than the normal use of the product would justify. That should be pretty easy to do in most cases (if the drug has any benefits at all). But it leaves the potential users of those products vulnerable to a much higher risk of adverse events than the trial data suggest.

Tex

[megamoxie]

These observations are some of the reasons why a) I don't trust what a doctor says is a "benign pharmaceutical", b) I read the medication insert start to finish before taking so I know what side effects to watch for, and c) I want to control my MC using diet rather than medication. Yikes!

[nerdhume]

estrogen has a relatively long half-life, which means that even a small amount in circulation can have a significant effect, because it lasts longer than most hormones in circulation.

Thanks for the explanation, Tex. What I know from experience told me Uceris must raise estrogen levels because the effects are much the same as taking estrogen, and the effects seem to last a while after stopping the med.

[tex]

Theresa,

I forgot to mention an important point. The way that corticosteroids manage to execute such tricks is by attaching to the wrong receptors. IOW the world of steroid hormone receptors is not perfect. A certain percentage of corticosteroid hormones are able to attach to estrogen receptors (rather than glucocorticoid receptors), and activate them, and this triggers the release of estrogen. Even this limited quantity has an effect, because as pointed out in your quote, a little estrogen can go a long way. Here's a link to an abstract of a research article that discusses this:

Human spermatozoa as a model for studying membrane receptors mediating rapid nongenomic effects of progesterone and estrogens

Tex

[shona]

Interesting discussion (as always on this site!)

I know the GI suggested 2000 ui per day based on the blood test, but she said 2 x 1000 tablets made her feel funny (not sure in what way) so she cut it down to 1 x 1000.

I've suggested she restart onto 2. Probably a good idea to get it checked at the next blood test as 1 or even 2 might not be enough, you're right.

Do you all take enough Vit D to get your reading back into normal range (or high side of normal), or do you take more than that based on some other criteria?


I think this question might've slipped through the gaps :) thank you all!

One thing I also wanted to ask about that I read in your book Tex - I didn't realise that avoiding NSAID pain killers was a good idea - I had thought avoiding them was only necessary for people with drug-induced MC. I just wanted to clarify everyone with MC should be avoiding them? If so I'll make up a list of painkillers which aren't NSAID for my mum and suggest she just stick to those.

[tex]

Shona,

Many of us have to take more than the officially-recommended rates just to keep our blood levels of vitamin D from declining further, because of the fact that autoimmune diseases, especially IBDs (including MC), deplete vitamin d somewhat rapidly when the immune system is fighting inflammation. And if we want to boost our level, that requires even more supplemental vitamin D.

Remember that the official government recommendation for vitamin D sufficiency of 75 nmol/L is for people who have normal health, and who do not have an IBD. Anyone who has MC has to supplement vitamin D at a higher level in order to derive the same benefits that a blood level of 75 nmol/L provides for normal people. Virtually all GI specialists tend to grossly underestimate vitamin D needs for IBD patients. And this is very important, because when we starve the immune system for vitamin D, we open the door to the development of other autoimmune diseases (that's the point of my book about vitamin D and AI diseases).

Vitamin D supplements are available as tablets, gels, and liquids. Capsules may be available, but I've never noticed any. Common dosages available are 400, 1,000, 2,000, 3,000, and 5,000 IU per pill. 50,000 IU doses are available for people who want to take only 1 pill per week, every other week, per month, or whatever. Surely there is one that your mum can tolerate that will provide an adequate daily dose.

I think this question might've slipped through the gaps :) thank you all!

One thing I also wanted to ask about that I read in your book Tex - I didn't realise that avoiding NSAID pain killers was a good idea - I had thought avoiding them was only necessary for people with drug-induced MC. I just wanted to clarify everyone with MC should be avoiding them? If so I'll make up a list of painkillers which aren't NSAID for my mum and suggest she just stick to those.

Sorry, I got sidetracked and forgot to respond to that question. That question can't be answered with a simple "yes" or "no". The official recommendations (from GI specialists) is for everyone who has MC to avoid NSAIDs, because they are notorious for triggering MC. Unofficially, not everyone is sensitive to NSAIDs (if they were, all of the mesalamine-based [5-ASA] anti-inflammatory medications would be worthless for treating MC, because anyone who is sensitive to NSAIDS will also react adversely to all of those medications.

For anyone who reacts to NSAIDs, their use promotes the production of proinflammatory leukotrienes, which has been documented to lead to increased inflammation and diarrhea in IBD patients. The big question for MC patients who are not currently sensitive to NSAIDs is, "Will using NSAIDs lead to an eventual sensitivity to them?" Based on our experience here on this board, it appears that sensitivity rates to NSAIDs are much higher among members than published data suggest. I have no idea if that is because the published data are wrong, or because when MC is triggered, the genes that lead to a sensitivity to NSAIDs are typically triggered at the same time, so that we are much more likely to develop a sensitivity to NSAIDs if we use them.

The bottom line is that it appears that a relatively small percentage of us may be able to use NSAIDs without immediate adverse consequences. But it appears that there may be a significant risk for those individuals that tolerance of NSAIDs may be lost after a certain amount of usage. These are uncharted waters. I'm not aware of any medical research that would shed any light on this aspect of NSAID usage.

Unfortunately there are precious few alternatives to NSAIDs. Acetaminophen, tramadol, and narcotic painkillers seem to be about all that is available. There are certain "natural" remedies, such as Boswellia seratta extract, but most members who have tried Boswellia have had little success. Some members have had success using transdermal painkillers, and some have even found that they can tolerate NSAIDs when used transdermally, so you might look into those options.

You're very welcome,
Tex

[aquilegia]

I'm glad I started reading this post because I learned some more things that I was not aware of.

I did not realize that budesonide can lose its efficacy if you keep stopping it and re-starting it. I have never been able to get off it completely but am now down to one every other day. My goal has always been to get off it completely but it seems that may not be necessary and could even cause problems if it is needed again.

I also did not know all the ins and outs of vitamin D. I have been taking 4000 units a day for quite a while because I read that vitamin D deficiency is implicated in lots of medical conditions. Now after reading this I am going to increase it to 6000 units in the winter months.

Perhaps I should buy myself Tex's book as a Christmas present this year. Or I could give it to my husband as he is always buying presents for me that are really for him.

[Gabes-Apg]

Shona
sorry i missed that part of the question as well

I can not tolerate ibruprofen (nsaid) either orally or topically, even when my MC was calm, it caused me D. and based on the various discussions, i have not tried asprin since being Dx'd
I only use Panadol.

Vit D wise, i have taken 2000-8000 iu per day for many many years. earlier this year with some stress and an interstate move, my Vit D level halved in 3 months,for those of us with IBD's it doesnt take much for the levels to drop quickly when there is extra inflammation and stress on the body
The Vit D3 level has improved and stabilised since I corrected a Magnesium deficiency.

At times of feeling poorly, fighting flu type thing, I have taken doses of 10,000iu -15,000iu per day for a few days to help the body fight the inflammation. This with high doses of things like Zinc and Vit C, have worked really well for me.

Current protocols, Nutritionists in Aus can recommend dosage of 3000iu per day.
My current doctor (who are very wholistic based treating people with chronic illness etc) they recommend 3000iu-5000iu per day for patients with multiple health issues and inflammation.
I dont disclose the high doses to other doctors/medical professionals.

hope this helps

[shona]

Just wanted to report back to let you know the stopping Vit D was the problem - a week or so after restarting (this time on 2000 IU instead of 1000) all is back to how it has been for the past couple of years (not 100% well, but D mostly under control)

Vit D wise, i have taken 2000-8000 iu per day

Gabes, what would your blood concentration show? (eg around 75 or much higher?).

What improvement do you see in taking say 5000 daily compared to 2000?

I will see if my mum is willing to increase her dose for a few weeks. I know she was worried about overdosing it and mentioned something about 5000 IU a day being really high, but I think it is actually a lot higher than that (40,000+ by my reading) before it becomes an issue

[tex]

Hi Shona,

That's good to "hear" that resuming vitamin D supplementation resolved the problem. If she responded that strongly to such a low dose, she must be very deficient in vitamin D.

Actually, 5,000 IU daily is not a high dose. It's approximately how much vitamin D our body uses each day, under normal conditions. Someone who has MC (or some other IBD) uses much more each day. 5,000 IU daily is the amount of vitamin D that Dr. Cannell of the Vitamin D Council recommends for someone in the general population (that is, someone who does not have an IBD — someone who has an IBD needs more vitamin D). 10,000 to 20,000 IU would be a high dose. Someone who takes 10,000 IU or more, daily, would need to have their blood level of vitamin D checked after about 6 to 8 weeks, to see if they need to adjust the dosage.

You are correct that all known cases of vitamin D toxicity have involved individuals who were taking 40,000 IU or more, daily, for many months. It appears to be impossible to overdose at daily dosage levels of vitamin D below 10,000 IU, no matter how long that dosage level is continued. It's probably impossible to reach toxic levels of vitamin D at doses up to 20,000 IU per day on a long-term basis, but there is no point in taking that much vitamin D, because we don't need that much.

I probably get a lot more vitamin D from sun exposure than your mother (I live on a farm in sunny Central Texas), and I take 3,500 IU of vitamin D in the summer, 5,500 IU during the fall and spring, and 7,500 IU during the winter. The reason for the odd 500 IU in those amounts is because my multivitamin contains 500 IU of vitamin D. For reference, my most recent test (in mid-October) showed 58 ng/ml, which is equal to 145 nmol/l. I would like for it to be higher, but I consider this level to be adequate for most purposes (just not high enough to be ideal).

Tex

[Gabes-Apg]

Shona,
My Vit D3 levels have fluctuated a bit over the past 2 years. Earlier this year after a stressful period of having constant inflammation (not just MC conditions), being made redundant and moving interstate, despite daily supplementation of 5000iu my level halved in a 4 month period.
In periods of constant inflammation I struggled to get it above 40/50 even with 8000iu per day supplementation.

Since then I have fixed quite a few other deficiencies, magnesium and zinc, active forms of B, to name a few..... and have eliminated excess histamine, ie histamine inflammation. I am spending at least an hour in the early morning sun each day, with deficiencies fixed, and lanolin on my skin, my body is producing good amounts of Vit D3, and I am still supplementing a small amount.

If your mum has inflammation, she will use more than 5000iu per day, as mentioned in Tex's post above.

Depending on how long she has been poorly and had inflammation, Vit D3 alone may not be enough to resolve all the issues. Albeit supplementation of 5000iu per day will help a lot. I understand that with her age etc she may not be keen to start other supplements. Bang for your buck, using the Vit D3 at 5000iu will provide pretty good benefit.
Hope this helps...

[tex]

Shona,

Another thing to remember is that as we age, we lose much of our ability to produce vitamin D from sun exposure. And research shows that food is typically a rather poor source of vitamin D. Virtually no one can supply their vitamin D needs from their diet.

Tex

[shona]

hi guys,

Looks like I spoke too soon - although things were a little improved in December (during/after my visit there & when restarting the Vit D) - however it was short lived and the relapse has been back since a couple of weeks after that.

My mum is still on 2 Entocort & 2000iu Vit D daily but the D fluctuates - some days worse than others but still making her housebound much of the time.

I'm at a loss why the Entocort worked for 2 years and now isn't helping nearly as much.

Her GP got a stool sample tested for parasites - all negative. She has an appointment with her GI in a month.

[Gabes-Apg]

Shona
it has been common for long term users of entocort that over time its effectiveness can reduce.

(that is part of the reason we encourage diet changes to minimise the reliance on medications.)

There are alternative medication protocols that may or may not work better. The slight challenge is it can be a case of trial and error to figure out which one might provide better results. and being in Australia whether the Australian based GI is willing/able to prescribe them (we dont get the same access to medications as they do in the USA)

Uceris is one - a quick google search and I dont know if this is available in Australia yet...
LDN - those with multiple AI issues have had good results with LDN
Asacol (or any of the other mesalamine-based medications) - quite a few can not tolerate this med and it made them worse
Pepto Bismol is another that has been tried - I was struggling to confirm if this is available/able to be prescribed in Australia

Tex or one of the others might be able to offer further alternatives

There are other supplements that can work with the Vit D to help reduce the inflammation and reduce how much the D is occurring.
Things like Magnesium, Vit C, Zinc can help. if you want further information let me know.

the only other thing I can suggest is using imodium as well to reduce the D events.

Sorry things have relapsed.

[tex]

Shona,

I'm sorry to hear that bad news. Gabes has pretty well covered most of the options that are available. I'm kind of surprised that Pepto-Bismol is not available OTC, but even if it is, without diet changes it would probably only be helpful for about 2 or 3 months, because if taken much longer than that, it can lead to a toxic buildup of bismuth in the body.

I don't recall what your mother's vitamin D level was at the last test, but if it is less than about 75 nmol/l, then taking only 2,000 IU of vitamin D per day may be the reason why she cannot maintain remission on Entocort. If I were in that situation I would be using at least 5,000 or 6,000 IU of vitamin D per day, unless I was sure (by test results) that my blood level of vitamin D was over 150 nmol/l.

A normal person in the general population uses approximately 5,000 IU of vitamin D every day. It is virtually impossible to get even close to normal needs of vitamin D from the food we eat. But someone who has an IBD uses much, much more vitamin D than a normal person. Therefore, unless your mum receives a lot of sun exposure every day, so that she gets enough vitamin D from the sun, then she is probably falling way short of her needs at 2,000 IU of supplemental vitamin D daily. That's just my unprofessional opinion.

My opinion of Low Dose Naltrexone (LDN) is that it seems to be very useful for many autoimmune issues, but not for MC. However, if other AI issues (such as diabetes, MS, etc.) are preventing remission from MC, despite the use of good treatments for MC, then LDN may be worth a try, because if it brings remission for the other AI issue, then that may allow MC to go into remission.

One of the reasons why Entocort loses effectiveness is because as we continue to eat foods that cause our immune system to produce antibodies, our antibody levels continue to climb. At some point those levels probably become more than budesonide can overcome, and the inflammation caused by the reactions triggered by those antibodies simply becomes more than the budesonide can handle.

The final option for treating MC (or any other IBD) is an immune system suppressant. Suppressing the immune system leads to an increased mortality risk due to infections and cancer, but many Crohn's patients (and a few MC patients) have used it as a treatment of last resort when they were unable to attain remission by means of conventional treatments. The immune system suppressant most commonly successfully used for MC is Azathioprine (Imuran).

So far, those who have tried to use any of the anti-TNF drugs (such as Remicade, Enbrel, Humira, etc. ) for MC have been unsuccessful. Those drugs seem to control most AI issues well, but they simply don't work for MC. In some cases, they seem to make the symptoms worse.

The most effective (and safest for our health) treatment of course is diet changes that totally avoid all of the foods that cause the production of antibodies. But for patients who are unable or unwilling to follow a strict diet, a treatment using one of the medications mentioned above can often be effective.

Good luck with whatever you decide to try.

Tex