1 week back on Entocort and question about bone density loss

[ozgal]

Hi all

A big thanks and heartfelt appreciation to all that responded to my newbie post last week including special mention to Gabes who is awesome and spent time with my husband and I over the phone!! This is a fantastic forum with lots of valuable information and support

Here's a brief re-cap from my last post:
Dx with LC in March 2013. Took Entocort 9mg for 4 weeks, 6mg for 2 weeks, 3mg for 2 weeks. Also adopted a SCD diet and omitted NSAIDs at the same time and started feeling great. However, in week 9 after my last dosage of Entocort, I relapsed. Revisited GI who prescribed another round of Entocort (same dosage as last time). Found this forum and although I had already cut out gluten, vowed to cut out all potential foods that I may be intolerant to immediately e.g. dairy, soy, eggs & honey (for fructose content).

I'm currently following a basic diet (consuming only white rice, chicken cooked in coconut oil, mashed ripe bananas, water, homemade broth/stock, peppermint tea, lemongrass & ginger tea and gastrolyte). I don't consume any processed, packaged or canned foods. I'm avoiding skincare products that contain any potential allergens. I've also started taking supplements (daily doses of 1 tsp L glutamine, 1Tbsp coconut oil, 2000IU Vit D3 drops and 1000ug sublingual Vit B12). I've followed this basic diet for 1 week and plan to continue for another 1-2 weeks before I start slowly introducing foods such as well-cooked carrot, green beans and pumpkin one at a time. I have a food journal and have also started recording any activities (such as work) that are a cause of stress on any given day.

It's been 1 week so far after my relapse. The re-introduction of Entocort took it's toll on my body. I've experienced exhaustion, mood swings (happy one minute, sad and grumpy the next), body aches, knee joint pain and ab and back pain.

My BMs have decreased from 8 liquid D BMs per day to 2-3 very soft unformed BMs per day but no sign of a norman yet. I have continued frequent urination (10-12 per day).

I've experienced an emotional roller-coaster ride in coming to terms with my Dx and most likely will continue to do so over the coming months.

I had thought after the initial round of Entocort and SCD diet I was "home-free" and didn't think/want to believe this would be a lifelong thing with relapses and life change requirements. I was depressed at the thought that my progress since March had gone down the drain.

Prior to my relapse I was attending 2-3 Pilates sessions a week, hula hooping and had just started yoga. I had good stamina and could brisk walk without breaking a sweat. I've been shocked and upset at how quickly my energy levels had dropped to the point I've had to cancel all my Pilates and yoga sessions just so I could reserve the little energy I had to get through day-to-day. My weight's started dropping again (now sitting at 54kg/119lb, 170cm/5'7") and I'm noticing muscle loss.

I know it's a slow recovery and tweaks will be required as there's so much gut healing to do.

Unfortunately I cannot afford the Enterolab testing at the moment and have read others have intolerances to rice, chicken and bananas. I can't help wondering "What if I'm still eating something I'm intolerant to?! Will I be able to tell while being on the maximum dosage of 9mg?"

Tex, thanks so much for taking the time to write such an informative book on MC! I have a question regarding Entocort. It's stated in the book that "...discontinuing a treatment with budesonide and restarting it increases the risk of bone density loss." As this applies directly to my situation, could you please offer any advice on what I can do (if anything) to counteract this? Are there certain supplements I should be taking? What about strength/resistance training exercises?

I've started to realise other symptoms I've had for many years such as poor circulation and foot cramps may actually be related to MC.

Thanks again to everyone for taking the time to share your individual experiences. I've got a huge amount of reading to do, but it's been really helpful reading all your stories so far!

best
Helen

[tex]

Hi Helen,

Yes, Gabes is indeed an awesome Aussie and a very dear member of this internet family, and we would love to be able to clone her.

I can't help wondering "What if I'm still eating something I'm intolerant to?! Will I be able to tell while being on the maximum dosage of 9mg?"

No, probably not, unless you are unable to attain remission with the help of budesonide. But as you wean off the medication, and taper the dosage, at some point you will begin to react if you still have any problem foods in your diet. That will be your opportunity to fine-tune your diet while you still have some degree of control provided by the budesonide. Of course for more minor sensitivities, the reaction may not develop until after you have completely weaned off the budesonide, but by then your intestines should have healed enough that you should respond relatively quickly to diet changes (by contrast, improvements come much more slowly, early on).

Tex, thanks so much for taking the time to write such an informative book on MC! I have a question regarding Entocort. It's stated in the book that "...discontinuing a treatment with budesonide and restarting it increases the risk of bone density loss." As this applies directly to my situation, could you please offer any advice on what I can do (if anything) to counteract this? Are there certain supplements I should be taking? What about strength/resistance training exercises?

That's a unique characteristic of budesonide. In effect, it provides a free ride (as far as bone density effects are concerned) the first time it is used, but with subsequent treatment programs, that waiver is lost. However, even with subsequent treatment regimens, budesonide is not nearly as aggressive at causing bone density loss as other conventional corticosteroids, especially since research shows that less than 19 % of it is ever absorbed into the bloodstream. Since the 81 % (or more) that goes directly into treating the terminal ileum and colon is unavailable for absorption into the bloodstream, it's easy to see that less than a fifth of it even has the potential to cause bone density loss because it cannot circulate in the blood, to other parts of the body.

The main cause of bone density loss by far (IMO), is untreated gluten sensitivity. Everything else is subordinate to gluten, as far as loss of bone strength is concerned. This is just a guess (because no research is available on this), but I would guess that the bone density loss that can be attributed to budesonide is only a fraction of the amount lost during the same time frame as a result of untreated gluten sensitivity. With gluten out of your diet, you have eliminated the biggest long-term threat to your bone density. And since the budesonide treatment will only involve a relatively short period of time (relative to your lifetime), it's effect on bone density should be negligible at best, and very minor at worst.

We have a number of members here who have used budesonide (at various dosage levels) for years, who have been able to prevent further decline in their bone density simply by taking no more budesonide than is necessary to do the job, and keeping their vitamin D level up, together with adequate calcium and magnesium intake. And by doing regular weight-bearing exercises, some have even been able to slightly improve their bone density test scores. At least one member in this situation (taking budesonide long-term) is using strontium ranelate to improve her bone density levels.

In your situation (short-term use), you shouldn't need any additional treatment intervention to counteract bone density loss, because bone density loss should not be significant for such short term use. Vitamin D and regular weight-bearing exercise should preempt any risk of bone loss, for all practical purposes.

I've started to realise other symptoms I've had for many years such as poor circulation and foot cramps may actually be related to MC.

Untreated gluten sensitivity and malabsorption problems can cause those symptoms. Because of years of untreated gluten sensitivity (even before my clinical symptoms began), I ended up with peripheral neuropathy (similar to the peripheral neuropathy caused by diabetes), which I'm still treating with a prescription vitamin mix of B-12, B-9, and B-6, and plenty of vitamin D. And because of my diet limitations, I have to take a magnesium supplement daily, or leg and foot cramps will try to eat me alive.

You seem to be off to a great start with your treatment program, so you are well on your way toward getting your life back. Please keep us posted.

You're very welcome,
Tex

[ozgal]

Thanks for your detailed reply Tex. I'll keep you posted.

Helen