Just Got back from University of Florida

Finally got to see Dr. Valentine at Shands hospital at U of F.

Southeastern Center for Inflammatory Bowel Disease

Im going to use this thread to track my progress and let you guys know what the experts think The first post will be short as my first visit was just a consultation.

I know most of you already know this info but maybe it will help someone.

October 27 2010

 

1. Take Vitiman D! Americans do not get enough Vitiman D. Get your levels tested and stay at the top of your range. Decreased levels of vitiman D in your body can cause an increase in TNF-α, an inflammatory marker. Crohns patients take TNF blockers see the relationship?

2. Stop getting CT Scans and small bowel studies

Ct Scans are very high in radiation and are falling behind in technology. Barium studies are a waste of time. We know we have narrowing but what is the cause? Scar tissue or active disease.

Crohns patients need to have CT and MR enterography studies. Check it out here  http://radiology.rsna.org/content/251/3/751.abstract

http://img.medscape.com/fullsize/migrated/577/223/rad577223.fig1.gif

Also FDG-PET/CT scans I am waiting to have one of these done soon there are not many places to get it done, go figure....

http://www.healthimaging.com/index.php?option=com_articles&view=article&id=23146&division=hiit

 

This pretty cutting edge stuff here guys, these scans can help determine and show which medications work best in certin areas of the body.

 

3. I asked about LDN. I told the Doc I had great results but only for a few weeks each time I try it. He says there IS SOMETHING TO LDN and CROHNS. The problem is nobody is sure how or why it works. There are opoid receptors on inflamation cells. He does not recommend LDN at this time because I need something proven to work long term.

 

4. ANTI MAP THERAPY   Dont count it out just yet! There is no hard evidence this is the causative agent responsible for triggering crohns but the scientific evidence comparing human to bovine is identical. It cannot be dismissed totally and the doctor does allow his children to drink as much milk as they want

 

Conclusion : Since I have failed all of the TNF blockers Im going back to Imuran. He says I need at least 3 months for it to work and that in his opinion Imuran and Methotrexate combined are effective on 90% of CD patients. Docs are quick to jump straight to TNF blockers because they are easy to use but may not be the best drug.

BEFORE BEING STARTED ON IMURAN YOU MUST BE TESTED FOR THE ENZYME THAT METABOLIZES THE DRUG OR IT WILL NOT WORK> YOU WILL BE WASTING YOUR TIME

 

Waiting for blood work results for Imuran  and appointments for my scans!!!!!

 

Just thought Id pass it along

Post Edited By Moderator (Nanners) : 11/11/2010 7:17:48 AM (GMT-7)

Re point two, I must add that these "newer" scans are not available in all areas, so docs prescribing c/ts and x-rays are not necessarily ignorant of the research, but simply working with the resources they have.

 

Im driving 5 hours to get one. I think its worth while to make these resources available to you

well, I guess my VA docs are correct...

This sounds like a great GI! And that's so cool (or awesome, as my daughter would say) the VA works with Shands.

Would have been nice to know that there was a test forthe enzyme to break down immuran. My boy was on it for two years, and was never good, other than the month he was on pred.

I would be interested to know what test it is to see if Imuran really in working for our bodies.

Thanks,

The test for the enzyme is TPMT Enzyme. Info about it here: http://www.labtestsonline.org/understanding/analytes/tpmt/glance.html and

here http://www.prometheuslabs.com/Resources/PTM/DX06045_Patient_Brochure_PTM_PRC_Approved.pdf

The above PDF from Prometheus Labs also talks about the Thioprine Monitoring test, which monitors therapeutic responses in patients to therapy with Imuran (azathioprine) and 6mp. 

Very interesting - thanks for posting! 

I'm going to ask my GI doc about MR enterography.  My last SBFT showed narrowing, but they can't say for sure if it's scar tissue, or active CD.  My GI doc and the radiologist both think active disease and want to keep an eye on things.  I just don't want to go in for surgery or strictureplasty based on a test that might not be totally accurate or showing the full picture!  Not that my GI doc would suggest that per se, but it's always good to have more info than not.  Only other symptoms I've had are elevated CSR and ERP and low albumin (which all have been fluctuating)...so I was really bummed about the SBFT results. 

UPDATE

I started Imuran yesterday and will have blood work at 2 weeks and then Thiopurine levels checked at 1 month.  Its hard to sit and wait!!

 

 

Im scheduled for my CT Enterography / 18F-FDG PET on the 23rd of November. Its a combined PET / CT Scan. I have to be NPO after midnite  and the test is not until 1230 pm. Its going to rough drive to Shands with nothing to eat or drink. Well worth it though.

Vitiman D has made my nails thicker already Crohns still the same at this point.

Does Imuran make you tired?

Also Im reading you should be using 2 forms of Birth control for men or women. Imuran can make the IUD ineffective IM ASSUMING THIS IS IF THE WOMAN TAKES THE IMURAN??

Unless the semen does something to  the IUD to make it uneffective? Any Ideas?

 

Hello-

I just had the pleasure of seeing Dr. Valentine myself.  He's great!

 

Hey Shiney are you in FLA? Are you having any of the scans done?

Thanks

Thanks for sharing. I wish you all the luck in the world that you find something that works for you. Like you, TNF blockers no longer work for me. And I am ONLY on imuran. I've thought about talk to the doc abotu MTX but, is it just me or anyone else scared crapless about the side effects? For someone like me who suffers from arthritis, and the side effects saying it can increase the RA. Am I crazy to be so afraid of it??!!

redspot321 said...
BEFORE BEING STARTED ON IMURAN YOU MUST BE TESTED FOR THE ENZYME THAT METABOLIZES THE DRUG OR IT WILL NOT WORK> YOU WILL BE WASTING YOUR TIME

Clarification - The test you are referring to detects the extent to which your body can metabolize or break down the mercaptopurine into the metabolites (smaller parts). One of these metabolites is what is thought to have a therapeutic effect. Some people have the gene that allows them to fully metabolize the drug. Others can only partially metabolize it and some not at all.

It cannot predict or show who will actually get a therapeutic benefit from mercaptopurine - just whose body can break it down and to what extent.

If you respond to mercaptopurine then the extent of your response may be related to the your body's ability to break it down but there are many other factors that play a role that are not well understood.

The primary reason usually given for using this screening test is to screen out those who cannot metabolize the drug at all or are very low metabolizers. They are at risk for toxic reactions more than those who can metabolize the drug "normally". 90% of people have what is considered normal processing of mercaptopurine.

That said, there is quite a lot of uncertainty about who will and will not respond to mercaptopurine and a lot of variation in the doses at which people achieve remission.

One technique that can be used to enhance response in those who have toxicity at "normal" doses is to reduce the dose and add allopurinol which changes the way the liver metabolizes mercaptopurine.

The test which shows the amount of each metabolite in your blood is a separate test performed at the Prometheus lab. Many insurance companies will not cover this test because there is a lack of research that shows there is clear clinical value to using the results to determine dosing/course of treatment.

Other common lab tests must be performed on a frequent basis during the first several months of therapy and then on a regular basis long term. These tests often detect toxicity (liver or bone marrow suppression) quickly and effectively and can be done at your local lab.