Two weeks ago, I received my first dose of IVIG in order to try to treat the paraneoplastic neurological syndrome triggered by Stage IV melanoma that has caused me significant health problems including:
- painful peripheral neuropathy in the hands and feet,
- myleopathies, myocolonus,
- autonomic dysfunction, and
- severe muscular-skeletal pain among other issues.
***Neuropathy even spread to my heart, slowing down the heartbeat to the point that I required a pacemaker.***
For the past two and one half years, I have been on a Cytoxan regimen that has, until recently, kept me relatively stable. However, the long term use of Cytoxan significantly increases the risk for other secondary cancers, such as bladder cancer. And, over time, the effects of Cytoxan accumulate. Therefore, continued long term use of this drug is not advised.
***As an alternative, my doctors suggested and then prescribed high dose IVIG.***
I think that I should share my experience with the first dose and I will share future experiences with future doses of this drug. Hopefully, over time, it will provide relief from the unrelenting symptoms of my condition.
Ig is prepared from the plasma collected from a large number of normal individuals, usually between 10,000-50,000, who have been carefully screened to make sure they are healthy and do not harbor certain infectious diseases. The plasma contains a broad range of specific antibodies to many different types of bacteria and viruses. To commercially prepare the Ig for patients, it must first be purified (extracted) from the plasma. All Ig licensed in the U.S. is made from plasma collected in the United States. Purified Ig has been used for nearly 50 years and has an excellent safety record.
***Ig is very expensive as you might imagine from what it takes to produce a single dose. It is not covered by all insurance and it is not covered for all conditions for which is might be helpful.***
You must work with your doctor to get coverage from your insurance and for your diagnosis. Sometimes it takes your doctor being more specific with your diagnosis in order for coverage to be approved. If it is not approved on the first go around, don’t give up. Keep trying. Research your insurance company’s protocols and continue to work with your doctor! If you need it, you should be able to get it.
Approximately half of the infused antibodies are metabolized over three to four weeks, so repeat doses of Ig are required at regular intervals. Since Ig only replaces the missing end product, but does not correct the patient’s defect in antibody production, Ig replacement is usually necessary for life. My prescription for IVIG calls for the administration of the drug every four weeks. My next dose will be the first week of September 2014.
***Because IVIG infusions are usually given once every three or four weeks, this interval of administration results in a very high “peak” IgG level in the blood right after the dose is given and a lower IgG level in the blood at the “trough” just before the next dose is due.***
In my case, the peak positive effect seems to have come in the second week after administration once the side effects went away. Now that I am entering the third week, it seems that the burst of energy I felt last week is at least partially going away. However, I still believe that there have been some positive effects of the IVIG.
***Since stopping the Cytoxan, I started to experience a worsening of symptoms. Especially the pain I feel. Both neurological and muscular-skeletal pain.***
I had found ways that were effectively helping me control this pain but pain control has become much more difficult since stopping Cytoxan therapy.
***So, in summary, my initial results from stopping Cytoxan and starting IVIG are less fatigue but more pain.***
There is a potential for some side effects associated with IVIG:
- low-grade fever,
- aching muscles or joints or
- post-infusion headaches occur.
***These symptoms can usually be alleviated or eliminated by infusing the immunoglobulin at a slower rate and/or by giving acetaminophen, non-steroidal anti-inflammatory drugs like ibuprofen, or even small amounts of short-acting systemic steroids.***
Sometimes saline infusions may be given before IVIG, and/or infusions may be run more slowly to help minimize side effects. Less often, patients experience hives, chest tightness or wheezing. These symptoms usually respond to antihistamines such as diphenhydramine (Benadryl™) and/or asthma medications like albuterol.
Headaches associated with IVIG are not uncommon and may occasionally be severe, especially in patients with a history of migraine headaches. These headaches may occur during the infusion or as long as three days later.
***Some patients with severe and persistent headaches have been found to have an increase in the number of white blood cells in the cerebral-spinal fluid. This condition is known as aseptic meningitis.***
The cause of this apparent inflammation is not known, but it is not an infection and patients have not had permanent injury. This is the side effect that I suffered from my first dose of IVIG.
- The severe headache started about 12 -14 hours after administration of the drug.
- It was accompanied by high fever (103 degrees) and severe aches and pain.
- It was as if I could hardly move.
- I could not stand any light whatsoever.
- It was a miserable situation.
- The headache almost completely went away after about five days and I thing I was fully recovered from the aseptic meningitis after about seven days.
Then, I experienced the benefits of the drug with much less fatigue, more endurance and a much improved appetite. However, my neurological and muscular-skeletal pain did not subside and I believe has only worsened now that I am entering the third week post treatment. And, while I still seem to have more endurance than before, the afternoon overwhelming feeling of fatigue appears to have returned.
***It may take several infusions to develop a tolerable specific IVIG regimen for me.***
- the product used,
- the rate of infusion, and
- the need for any pre-medications.
***Once a regimen that is well tolerated has been found, it should be followed with EVERY infusion.***
The dose of Ig varies from patient to patient. In part, the dose is determined by the patient’s condition and weight.
***The first dose I was given was 1 gram per kilogram of weight or about 90 grams rounded off to the nearest gram. This was a large dose of IVIG.***
Next time, my dose will be divided into two days and the rate of infusion will be slowed down significantly. Also, I will be given Benadryl and Solumedrol by IV prior to the administration of the IVIG. Hopefully, the preventive medication, the dividing of the dose and the slower administration will prevent side effects from being so severe next time.
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