Medical Test results after 3 years of Diet and Entocort

[ant]

Dear All,

I thought it might be of interest to document my results after 3 years of diet and entocort (now averaging one every other day) treatment. (A treatment that gives me a life and with - at this point in the game - only occasional flares).

Bone Density

Here are the bone mineral density (BMD) scores compared with Nov 2009 (the last time tested)

Total BMD of the L spime = 0.810 g/cm2 with T- score = -2.6
(BMD change = +0.011 g/cm2 from study on 4 Nov 2009 = +0.5% per year)

Total BMD of the total left hip = 0.939 g/cm2 with T- score = -0.6
(BMD change = -0.012 g/cm2 = 1.3% from study on 4 Nov 2009 = -0.5% per year)

Total BMD of the left femoral neck = 0.674 g/cm2 with T- score = -1.9

Total BMD of the forearm = 0.596 g/mcm2 with a T- score = -1.5
(BMD change = -0.041 g/cm2 = -6.4% from the study on 4 Nov 2009 = -2.6% per year)

Impression:
Osteoporosis. Fracture risk: High.
No significant BMD change of the lumber spine and the left hip, but significant decrease in BMD of the left forearm since 4 Nov 2009. Rate of loss at the left forearm is slightly higher than that of normal population.

My impression:

Based on the average score I have osteoporosis in the lumber region due to L4 (which is T- score of -3.2; L1, L2, L3 are -2.4, -2.2, -2.3 respectively which indicates osteopinia). In fact this marginally improved from 2009).

Left hip little changed and is osteopinia

Forearm has moved from normal to osteopinia.

The bone specialist who saw me had the view that my Dx overall was closer osteopinia not osteoporis. I will take that! And it suggest that my Entocort use is not doing too much damage in this area. In fact maybe better absorption of nutrients due to less flaring as well as extra vit D is, if not halting, at least slowing down bone density loss.

Blood tests

ESR 9 mm/hr Normal. ref range 0-15
WBC 5.0 x 10^3/ul Normal. ref range 4.5 - 10.0
Neutrophil 65.8 % Normal. ref range 55.0 - 75.0
Lymphocyte 21.5 % Normal. ref range 20.0 - 35.0
Monocyte 9.6 % Normal. ref range 3.0 - 10.0
Eosinophil 2.4 % Normal. ref range 1.0 - 5.0
Basophil 0.7 % Normal. ref range 0.0-2.0
Neutrophilc band form 0% Normal. ref range 0 - 6
Atypical Lymphocyte 0%
NRBC 0/100 WBC
RBC 4.46 x 10^6/ul Low. ref range 4.50 - 6.00
Hemoglobin (Hb) 13.9 gm/di Low. ref range 14.00 - 18.00
Hematocrit (Hct) 42.4 vol% Normal. ref range 40.00 - 54.00
MCV 95.0 fl Normal. ref range 80.0 - 96.0
MCH 31.2 pg High. ref range 27.0 - 31.0
MCHC 32.9 gm/dl Normal. ref range 30.0 - 34.0
RDW 13.6 % Normal. ref range 11.5 - 14.0
Platelet Count 303 x 10^3/ul Normal. ref range 150 - 450

C-Reactive Protein (CRP) 0.12 mg/dl Normal. ref range 0.00 - 0.75
Calcium (blood) 9.4 mg/dl Normal. ref range 8.9 - 10.3
Phosphate (blood) 4.0 mg/dl Normal. ref range 2.4 - 4.7
Vitamin B12 202 pg/ml Normal. ref range 180 - 914
25-OH Vitamin D2 <1.1 ug/l
25-OH Vitamin D3 40.9
Folic Acid 5.7 ng/ml Normal. ref range 3.6 - 20.0
DHEA-S 57 ug/dl Normal. ref range 38 - 313
PSA 0.60 ng/ml Normal. ref range 0.000 - 4.000
Testosterone 2.67 ng/ml Normal. ref range 1.75 - 7.81
Cortisol 8.4 ug/dl
Liver function test profile was all in the Normal range
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Interestingly the doctor put me on a couple of months DHEA and Testosterone treatment saying the these were near the bottom of the range and could help given my "autoimmune" issues and that I was taking a corticosteroid.

I do not know what anyone thinks of this?

Wishing everyone good health, recovery and maintained recovery, Ant

[tex]

Hi Ant,

All in all, those appear to be very good results. The budesonide appears to be having a virtually negligible effect on your osteopenia situation. If you hadn't had years of accumulated damage from gluten before the problem was discovered, you almost certainly wouldn't even have any signs of osteopenia, now.

I note that your RBC was slightly low and your B-12 level was near the lower end of the range. I wonder if additional B-12 supplementation might also elevate your RBC. I agree with your doctor that the supplemental androgen (T) and DHEA will probably prove to be beneficial.

In general, your inflammation level appears to be quite low, so you must be doing a good job with your treatment program.

Thanks for sharing this information -- since you had an existing osteopenia/osteoporisis problem before you even started taking Entocort, these data provide some valuable insight into the long-term use of low dosage rates of budesonide. As we suspected, it doesn't appear to create any major problems.

All my best,
Tex

[ant]

Dear Tex,

Thanks for your reply. I will take on your B-12 point. I am certain these results would not have been so good without your guidance and many of the other good folks on PP. I remember how very low my vitamin scores were in Nov 2009.

Best, Ant

[mickjcat]

Hi Ant,

Thanks for posting your bone density scores. I have osteopenia and I am tritating off of Entocort starting with 6mg, I was only on it for 3 weeks before major swelling in both feet and face. My doc wants me off....so today after 2weeks of 2-1-2-1 etc. I start 1-1-1-1 etc. for another 2 weeks and 1-0-1-0 etc for 2 weeks.

My question is: what mg did you start with and how long did it take to get you at 1 every other day?
Continued success!

[ant]

Dear Mickey,

After somewhat reducing D with Pepto Bismol for few months I tapered off PB and the chronic D returned.

As a result I started 9mg entocort a day (three pills). After 6 months at this level I found that my chronic D (and bloating/rumbling) had trended down. Based on my recording of the number and quality of BMs each day. (I say "trended down" because there were many ups and downs regarding flares. But taking a long term average over the months I could see a gradual improvement. That is why my sign off is "softly, softly catchee monkey")

So after 6 months I tapered to 6mg (two pills) a day. I stayed at this level for 3 months and when I felt the trend was safe (including a couple of weeks of normal BMs I tapered down to 3mg (one pill) a day. I stayed at this level for about another 3 months.

Then I tapered down to one pill every other day. I stayed at this level for another two and half months. At which point I came off entocort. 59 days later I went into a major flare and went back up to two pills a day. Ever since then I have tapered or increased depending on my flare activity.

I have now, over three years since I started entocort, reached a norm of one every other day except when I get the occasional flare when I temporarily up to one or two pills a day to help end the flare.

I hope this is useful.

Best wishes and hope you have a quicker trend down then I did (we are all different) and importantly I did not get any of face or feet swelling from taking entocort, which might mean you need to take a different approach. Ant

[mickjcat]

Thanks Ant!
Only time will his long it will take.......I hope with diet and a little help from Entocort I will reach the new normal..