Wednesday, March 5, 2014

2. Treatment vs 'cure' - CIDP 

Алты́нного во́ра ве́шают, а полти́нного че́ствуют.

(Little thieves are hanged, but great ones escape.)

 Literal: The thief who stole an altyn (3 kopecks) is hung, and the one who stole a poltinnik (50 kopecks) is praised.

If you've found this blog, it's probably because you've got CIDP yourself or someone you care about has been diagnosed with CIDP, MS, other autoimmune illnesses from the list here, and you're searching desperately for answers. We've all been there.

Our doctors in the USA seem to be adept to greater or lesser degree with treating our illness. The problem is that, with rare exceptions, no one seems motivated to search for a cure.  There's just no money to be had in curing people. We have a myriad of 'treatments', drugs, advice and more drugs, all of which maintains our state of illness to a greater or lesser degree.  It will take longer for our CIDP to kill us, perhaps, but the side effects from the current FDA approved treatments might kill us first so it's like a double assault.

As an example, the following more or less describes the most successful maintenance treatment I've found for CIPD - IVIg (immune-globulin via intravenous delivery).  My routine is now 120gr per treatment, given over a 3-day period at 21-day interval. Each of the three days I go to the out-patient infusion center, am on IV for around 5-6 hours.  For the first 2 years on IVIg, I had relatively good healing of damaged myelin sheath and regained much of the use of legs I'd initially lost to GBS/CIDP.  This last year, however, I have been showing more and increasingly worse side-effects from the IVIg. The worst being severe migraine that can last anywhere from 1-5 days (to date) relative to the 3 days it takes to complete my IVIg infusion treatment.  Other times it saps what energy I do have, and about all I can do is go home and sleep for 12-16 hours, get up and return to the next day's infusion.

Here you can see what IVIg is about, though I can't express to you the intrusion into one's life it truly is, nor the worry each time over how bad the side effects might be:

This is how I spend 6 hrs a day, 3 days of every 21:

And this is essentially how it works to distract the body's errant immune system from attacking it's own tissues (for those of you who love graphics and charts):

And this is what IVIg looks like, basically.

Brand Names: Carimune, Flebogamma, Gammagard, Gammagard S/D, Gammaplex, Gammar-P I.V., Gamunex, Octagam, Polygam S/D, Privigen, Sandoglobulin
Generic Name: immune globulin (intravenous) (IGIV) (Pronunciation: im MYOON GLOB yoo lin)
What is immune globulin intravenous (IVIG) (Gammagard)?
What are the possible side effects of immune globulin?
What is the most important information I should know about immune globulin?
What should I discuss with my health care provider before using immune globulin?
How is immune globulin intravenous given?
What happens if I miss a dose?
What happens if I overdose?
What should I avoid while using immune globulin?
What other drugs will affect immune globulin?
Where can I get more information?

What is immune globulin intravenous (IVIG) (Gammagard)?
Immune globulin intravenous is a sterilized solution made from human plasma. It contains the antibodies to help your body protect itself against infection from various diseases.

Immune globulin is used to treat primary immune deficiency, and to reduce the risk of infection in individuals with poorly functioning immune systems such as those with chronic lymphocytic leukemia (CLL). IGIV is also used to increase platelets (blood clotting cells) in people with idiopathic thrombocytopenic purpura (ITP) and to prevent aneurysm caused by a weakening of the main artery in the heart associated with Kawasaki syndrome.

Immune globulin is also used to treat chronic inflammatory demyelinating polyneuropathy (CIDP), a debilitating nerve disorder that causes muscle weakness and can affect daily activities.

Immune globulin may also be used for purposes not listed in this medication guide.

What are the possible side effects of immune globulin?
Get emergency medical help if you have any of these signs of an allergic reaction: hives; difficulty breathing; swelling of your face, lips, tongue, or throat.

Call your doctor at once if you have a serious side effect such as:

urinating less than usual or not at all;
drowsiness, confusion, mood changes, increased thirst, loss of appetite, nausea and vomiting;
swelling, weight gain, feeling short of breath;
wheezing, chest tightness;
feeling like you might pass out;
fever with headache, neck stiffness, chills, increased sensitivity to light, purple spots on the skin, and/or seizure (convulsions); or
pale or yellowed skin, dark colored urine, fever, confusion or weakness.
Less serious side effects may include:

mild headache;
tired feeling;
back pain, muscle cramps;
minor chest pain; or
flushing (warmth, redness, or tingly feeling).
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

Read the Gammagard (immune globulin) Side Effects Center for a complete guide to possible side effects

Learn More »

What is the most important information I should know about immune globulin?
Immune globulin can harm your kidneys, and this effect is increased when you also use certain other medicines harmful to the kidneys. Before using immune globulin, tell your doctor about all other medications you use. Many other drugs (including some over-the-counter medicines) can be harmful to the kidneys.

Before using immune globulin intravenous, tell your doctor if you have kidney disease, diabetes (especially if you use insulin), a history of stroke or blood clot, heart disease, high blood pressure, a condition called paraproteinemia, or if you are over 65 years old.

To be sure this medicine is helping your condition and is not causing harmful effects, your blood will need to be tested often. Your kidney function may also need to be tested. Visit your doctor regularly.

This medication can cause unusual results with certain blood glucose tests. Tell any doctor who treats you that you are using immune globulin.

Immune globulin is made from human plasma (part of the blood) which may contain viruses and other infectious agents. Donated plasma is tested and treated to reduce the risk of it containing infectious agents, but there is still a small possibility it could transmit disease. Talk with your doctor about the risks and benefits of using this medication.

One reason I'm looking into HSCT (Hematopoietic Stem Cell Transplantation) is I have developed many of the noted side effects, plus I'm now 64 years old, have med-related elevated blood pressure, migraines, drowsiness, weight gain, confusion and etc., etc., PLUS, while we have excellent insurance, the meds and delivery costs for me (just one of many many people using IVIg) add up to roughly $244,000 per year.  And prior to ACA, most people who need this costly med to keep them from a very fast deterioration to wheel chair and bedridden state have lost their ability to work, or have had to quit working in order to get SSDI (social security disability) which was the only pathway to getting medical care via Medicare/Medicaid as a disabled person. That means our tax dollars are maintaining the illness of a huge number of people. 

It would seem to me that the idea of $45,000 to $125,000 as a one-shot fee for HSCT would benefit not only the patient and their families, but also the tax payers and the National debt. But with the immense lobbying success and funding to legislators by the pharmaceutical industries, there is no funding for cures. FDA squelches or demands exceptionally long trial phases that might otherwise produce affordable curative treatments such as HSCT, which is used internationally and has roughly an 76-85% full remission & 'cure' rate currently.  

And while the costs are much lower for the other popular 'treatment' for Autoimmune illnesses across the board is Prednisone (a steroid), the side effects are much much worse.  Ah, the more you learn as 
you're trying to regain your life, the more discouraging it becomes.

My experience over the past 3+ years of WARing against CIDP's and 'illness maintenance' ravages has brought me to the doorstep of an adventure into PEACE and to a 'cure' - HSCT, and I'm entering a well respected clinic in Moscow on April 6, 2014, to reboot my immune system with my own stem cells. Yes, after 3+ years of illness maintenance and its side effects, I'm choosing the best path to full remission - a 'cure'.  More about the clinic later. . .  come along with me. 

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