Wednesday, March 5, 2014

4. CIDP: An Internal War Zone

"Битва выиграна, кто твердо привержена."

"A battle is won by him who is firmly resolved to win it."  
Leo Tolstoy, War and Peace.

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Someone asked me if I'm crazy going to Moscow - didn't I know it's a war zone?  In fact, Moscow isn't a war zone, but my own body is.  That's about the only way I know how to think of CIDP and the 'illness maintenance' protocols I've been using to fight it for over 3 years now. 

       I AM a war zone!

I suspect my comment in last post caught your eye, caused a look of incredulity:  $244,000 (my annual Rx bill, including IVIg for CIDP)

Hefty profits, no?  That's just ONE cost  I want to address.  But I wanted to speak to some of the other options for 'illness maintenance' that make the war zone within even more dangerous.

Initially, my meds included pain relief aid, Gabapentin. This is a drug used in epilepsy, and it does calm the nerve messages so brain isn't overloaded with false pain notifications from all those small nerve fibers that have been demyelinated. But it also makes one lethargic, spaced out, sleepy.

I was also prescribed pain meds like Hydrocodone, which did nothing for my pain, but aggitated me and worked against the Gabapentin.  It's also seriously addictive. I turned it away very soon and asked for something that would work better on pain, but not agitate me otherwise. I was then given Tramadol, a pain relief med that is more directed to nerve pain in particular. I've gotten along well with that.

There are side effects to meds like Gengraf (cyclosporine) and Cellcept, (each designed to reduce the body's immune response, and each at times part of my meds), to include serious elevation in blood pressure and that increases over time. IVIg also elevates BP.  Just before Christmas, 2013, I had a period of spiking BP and on 23rd, had 215/125 BP. I looked online and it said "call 911".  I went to the ER on my own. I don't think everything needs an ambulance.  I was prescribed 2 different meds to counter the elevated BP that is a side effect of CIDP meds.  And those depleted my Potassium, so another med was added to help those levels stay up. Very low potassium can cause heart failure.

My meds have meds.

And as IVIg has caused severe migraines for the past year, it's possible I'd be put on a regimen of high steroid dose, something like 60-80mg of Prednisone soon.  I've used Prednisone in short burst fashion to extend my legs' ability to stay under me for buying trips.  It is a true "heaven/hell" med.  If one were to diagnose Prednisone, I believe it would be bi-polar.  The prednisone makes you have more energy, (and insomnia) and removes a good deal of inflammation everywhere so you actually do feel very good on it, at least initially. You also have hot flashes.  While a couple of intermittent short period 'boosts' in a year is relatively harmless, those who are put on Prednisone as a primary med for CIDP or other Autoimmune Disorders suffer terrible side effects over even a relatively short period. Just yesterday I saw a post from a man who, on Prednisone, put on 60 pounds in a few short months, exacerbating other body systems' health.

I'm going to copy here for you the literature about Prednisone (quoting WebMD):

Drugs & Medications - Prednisone Oral

prednisone oral

Does prednisone oral have side effects?

The following side effects are associated with prednisone oral:
Common side effects of prednisone oral:
Infection Severe
Conditions of Excess Stomach Acid Secretion Less Severe
Chronic Trouble Sleeping Less Severe
Increased Hunger Less Severe
Nervous Less Severe
Infrequent side effects of prednisone oral:
Bleeding of the Stomach or Intestines Severe
Thin Fragile Skin Severe
Osteoporosis Severe
Diabetes Severe
Cushing's Syndrome Severe
Low Amount of Calcium in the Blood Severe
Small Red Skin Lesions caused by Dilated Blood Vessels Less Severe
Irregular Periods Less Severe
Dry Skin Less Severe
Puffy Face from Water Retention Less Severe
High Blood Sugar Less Severe
Rare side effects of prednisone oral:
Pseudotumor Cerebri Severe
Disease of the Nerves Severe
Muscle Problems Severe
Increased Pressure in the Eye Severe
Increased Pressure in Eyes Severe
Cataracts Severe
Injury of the Optic Nerve Severe
High Blood Pressure Severe
Complete Stoppage of the Heart Severe
Slow Heartbeat Severe
Abnormal Heart Rhythm Severe
Chronic Heart Failure Severe
Obstruction of a Blood Vessel by a Blood Clot Severe
Obstruction of Blood Vessel caused by a Fat Globule Severe
Vasculitis Severe
Blood Clot in Vein Severe
Fluid in the Lungs Severe
Ulcers of Esophagus Severe
Ulcer from Stomach Acid Severe
Acute Inflammation of the Pancreas Severe
Lupus-Like Syndrome Severe
Rupture of a Tendon Severe
Delirium Severe
Hallucination Severe
Seizures Severe
Trouble Breathing Severe
Enlarged Liver Severe
Abnormal Liver Function Tests Severe
Broken Bone Severe
Impaired Wound Healing Severe
Life Threatening Allergic Reaction Severe
Reaction due to an Allergy Severe
Kaposi's Severe
Insufficiency of the Hypothalamus and Pituitary Gland Severe
A Rupture in the Wall of the Stomach or Intestine Severe
Anemia Severe
Large Purple or Brown Skin Blotches Severe
Decreased Neutrophils a Type of White Blood Cell Severe
Mood Changes Severe
Paranoia Severe
Mental Disturbance Severe
False Sense of Well-Being Severe
Extreme Sense of Well Being Less Severe
Depression Less Severe
Blurred Vision Less Severe
Optic Disk Edema Less Severe
Hemorrhage of Blood Under the Skin Less Severe
Absence of Menstrual Periods Less Severe
Problem with Periods Less Severe
Inflammation of Skin caused by an Allergy Less Severe
Redness of Skin Less Severe
Skin Stretch Marks Less Severe
Excessive Hairiness Less Severe
Acne Less Severe
Hives Less Severe
Joint Pain Less Severe
Muscle Weakness Less Severe
Loss of Memory Less Severe
Feeling Faint Less Severe
Sensation of Spinning or Whirling Less Severe
Dizzy Less Severe
Excessive Sweating Less Severe
Rash Less Severe
Visible Water Retention Less Severe
Small Reddish-Purplish Pin-Point Sized Spots on the Skin Less Severe
Scaling of Skin Less Severe
Weight Gain Less Severe
Head Pain Less Severe
Fast Heartbeat Less Severe
Hiccups Less Severe
Feel Like Throwing Up Less Severe
Swelling of the Abdomen Less Severe
The Presence of Sugar in the Urine Less Severe
Numbness and Tingling Less Severe
Not Feeling Well Less Severe
Overactive Thyroid Gland Less Severe
Underactive Thyroid Less Severe
Water Retention Less Severe
Abnormal Fat Distribution Less Severe
Confused Less Severe
Over Excitement Less Severe
Disorder involving Personality Changes Less Severe

Considering just these few in the arsenal of meds used by CIDP and MS and other AD sufferers just to 'manage' symptoms, you can easily see why I think research into a cure makes far more sense for everyone. Not only the patient but also their families and society at large. Of all the people I've met with CIDP, and that's probably around 500 around the world, nearly all - more than 80% - are not able to work, or are not working in order to qualify for SSDI and the resulting medical care.  It didn't take all that long to exceed a lifetime benefit cap in the old insurance years pre-ACA, and as we learn too late, insurance companies used to jump at any chance to remove a chronically ill person from their rosters. If you can't work, you probably lose your insurance, too.  So in order to qualify for medical care, many went to SSDI rosters in order to gain use of Medicare/Medicaid for their medical bills.  A travesty, some of which points are addressed in the ACA.

But if you have never had a serious life-altering and chronic illness, you don't think about that.

Please remember my first post, where I explained how quickly my very healthy and vibrantly active lifestyle was demolished by the onset of CIDP. From healthy to serious disability in the space of 10-12 days!  I learned so much about our insurance and medical institutions in the USA. I am outspoken now in support of ACA, though it is far from perfect. At least our Nation now does not leave a person out in the cold, drive them to bankruptcy, hasten their death for lack of coverage.

So, the reason people like me search out HSCT and are willing to undergo full-on Chemo as part of the HSCT process is that the alternative 'FDA approved protocol' is killing us!

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