Wednesday, February 4, 2015

So, How's That Treatment Going?

Since it's been awhile since we talked about our treatment we thought our online friends might want to know how things are going.  We went to the doctor just last Friday, 01/30/2015.  I'll get to what we found out in a minute, but first a review of the treatment we started.

Back in October of 2014 we reported among a number of things that we began a course of treatment with a medication of the same class as one which is being evaluated to treat Cushing's, that is Cabergoline.  Specifically it is not cabergoline used in my case, but another D9 agonist which is also a wider acting drug.  a couple of years back we underwent surgery to remove a tumor we hoped might be the culprit for our Cushing's though it is sited in a place more typical for a Cushing's like disease known as MENS, or Multiple Endocrine Neoplasia.  MENS is a Disease in which the victim presents with multiple tumors which secrete excessive amounts of hormones, cortisols being the most common.  It's not a nice disease to contemplate having as in many cases the tumors are cancers.

Within days we entered the local emergency room with agonizing muscle spasms only to find out that though we had removed a tumor suspected of causing Cushing's and prophylactically been given some corticef to head AI off, the local ER wasn't allowed to test for AI (Adrenal Insufficiency) because it wasn't considered an emergency situation, a really dumb idea given this patient had informed the staff that the possibility was on the table because of the surgery and that AI can kill in a hurry.  So the attending doctor pumped us full of another kind of steroids and muscle relaxers until the cramping stopped.  Then we were sent home on a very high dosage of prednisone and told to see the attending surgeon in  couple of days.

On the day of our appontment with our surgeon we tested our blood sugar and the home tesotr informed us that our blood sugar was high, no figure, just too high for the machine to test.  Since the appointment was an hour away and the office in the same building as the hospital's ER, we kept the appointment.  Naturally the doctor sent us down to the ER, where we were found disoriented on the way by a nurse who was off duty on break and she rounded up a wheelchair and somebody to take us down to the ER where we were admitted with a blood sugar of 608, a deadly situation.  When our condition was stabilized we got a referral to the only local physician we trusted enough to deal with the situation though it was outside his specialty.

Because that doctor felt our neurological system had been compromised he started us on two medications to deal with the situation, Gabapentin and Ropinerole.  We are sure the Ropinerole was a good call because we'd already started having some trouble with some mild restless legs style symptoms but hadn't reported them yet.  So we were on the way there and the ER treatment just probably hurried the situation along.  That was back in 2012 and I haven't had a high cortisol test since.  I've had a couple of very low ones, but no high one.  What made that really frustrating is that during 2013 we did an evaluation with the object of putting us on one of the two new medications to teat Cushing's and all of our test results came back on the high side of normal.  What is more certain symptoms of Addison's I have increased since.  So we couldn't get the medication to treat Cushing's, yet our cortisols were not at a level low enough to begin reversl of my condition.

While a friend and I were on the phone one day looking into a personal theory he had which he felt might explain our Cushing's, we stumbled on a paper about a trial of a medication being explored to treat Cushing's, the D9 agonist used to treat Parkinson's disease, Cabergoline.  It hit us one of our new medications, Ropinerole, is also used to treat Parkinson's, along with Restless Leg's Syndrome.  So we checked and fund out it is also a D9 agonist, along with acting on some other receptors as well, which would explain why it wasn't being evaluated as well.  So we talked with our endocrinologist on our next visit who felt we might be on to something and looked into Cabergoline and the possibility that tweaking our dose of Ropinerole might be a strategy for treating our Cushing's.  As a research physician as well as a professor of endocrinology the possibility struck a note with the doctor.  After six months of research and forming a plan, our dosage was slightly increase to see if the Ropinerole was indeed suppressing our cortisols and a treatment stratagem established.  By the way, the doctor who at the time was prescribing the Ronpinerole approved of our little experiment, tomorrow I'll tell him how it is turning out.

Now for the money part of the post. The doctor who started me on the Ropinerole will probably like what I have to report.  Technically I'm still at the small dosage range, small enough that increasing the dosage as we did probably wouldn't have hurt a thing.  Yet, my endocrinologist is pleased with results.  Our cortisols are now at a level he feels comfortable with for treating the disease.  Something to remember is that we are cyclical  and our cortisols do drop far enough on their own to cause problems, and may already have done so once since treatment began.  So the doctor wants to go slow enough to avoid that problem as much as possible.  While we don't blame him, we do have a problem with patience and are willing to risk much to gain much.

Our heamogobin A1C is stabilized a 7.0 and we have a demonstratable, if slow weight loss going.  We've gone from 368 lbs, at the beginning of treatment to 358 lbs, so the weight slope is downward.  Although we are still hypertensive, and that worries the Doctor, our blood sugars are well into normal range in the mornings.  So everything points toward success at this point.

We've also improved our health in other ways.  We are now off of pain medications and getting around better.  My back Doctor would probably be pleased with that and I might want to schedule an appointment with her for a new evaluation for that.  

If we continue to improve and could get our experience into the medical literature it would add another bit of evidence for the efficacy for treating Cushing's with D9 agonists safely.  With more treatment options open for Cushies more personal stratagems for the treatment of this disease be available to personalize the treatment to what works best for the individual.  That can't but help those of us who've waited so long for this day where more treatment options open up for us.

So I just thought my friends might want to the update.  I have a few more topics cooking and will hopefully have something more for you in a bit.


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