Copaxone Hives :(

As mentioned before Jennifer is (was actually...read on) taking Copaxone for her MS. About six months after starting the Copaxone, Jennifer developed a terrible case of hives (Uticaria). It started from a very bad site reaction from one of the shots.

If you read the information that comes with Copaxone, it says right there that hives are a possible side effect of Copaxone. When we brought that thought to Jen's neurologist, her response was "It can't possibly be the Copaxone." I dont know if this means she has never read the Copaxone literature, or if she doesnt understand that allergies can appear at anytime, or just believes blindly in this very expensive medicine. ugh. We are not going back to her again.

The hives covered nearly 100% of Jennifers body, from the soles of her feet to back of her head. Horrible itchiness and pain. We ended up in the Emergency Room and they gave her a prescription for Presnisone which mostly made the hives go away.

We had no interest in going back on the Copaxone after all this. But we still couldnt be certain that it was the Copaxone. As the prednisone was tapered off, the hives began to come back.

So we made an appointment with an allergist, my daughter's allergist, to cover all the bases. They tested Jennifer for a wide variety of food and environmental allergies. Zero food allergies and only a couple mild environmental ones. The allergist is convinced that it was the Copaxone, it makes the most sense. The allergist put Jennifer on a long slow taper of prednisone, along with significant amounts of antihistamines.

The hives went away, but now as she has gotten to the end of the taper they are starting to come back again, but not so bad as before. I have heard stories if people taking Copaxone getting hives that stayed for 6-months, a year, or permanently. the reduced intensity of them gives me hope that they will eventually go away completely.

Backhanded evidence of the effectiveness of the Copaxone as an MS drug....since the hives started all other MS related symptoms went away. But this time the cure is worse then the disease.

LDN In the mail

Instead of testing our local compounding pharmacy, we decided to order the LDN from a a pharmacy in florida thats familiar with it already, Skip's Pharmacy. It should be here in a few days. I'm really quite curious about it, given all that I've heard about it. I'll let you all know how it goes.

MS Update

Havent said anything in a while, lifes been busy.

Jennifer has so far been free of a major relapse, of which I am very thankful. She has started taking Copaxone, one of the approved MS drugs. Costs are over $1000 per month for this daily injection, which is way beyond our ability to pay. Fortunately there is a foundation that will pay for it if you can prove to them you are unable to pay for it yourself. The application was....horrible. Laying bare all my finances to a group of strangers was unpleasant, but at least this truth telling has gotten us the therapy for the cost of shipping. For that I am most humbly grateful.

Copaxone itself seemed the least unpleasant of the choices. All the other treatments are Immune suppressants, which gives you flu-like symptoms when you take them. ugh. Because copaxone is a daily injection, you need to switch around the place you take it so as to avoid messing up your skin. Jennifer says that the shot itself can burn as the medicine is going in. She sometimes gets big red welts that itch at the injection sites, and lumps under the skin that last for a week or two. And these are in fact the most common side effects of copaxone.

Fairly recently we realized that another symptom Jennifer had been having was probably also from the MS. I had always assumed that spasticity mean your muscles are jerking about, but it also covers the situation where a muscle is clenched all the time, resulting in a very sore spot that constantly feels like you've just finished a workout.

Very soon, Jennifer will start on a second medication, called Low Dose Naltrexone, or LDN for short. While our neurologist was dismissive of trying a drug that was not approved for MS, Jen's GP was more open-minded. LDN has been described as "a wonder drug" and "a powerful placebo" and everything in between. In the full strength form, it is used to treat alcoholics and other drug addicts. It blocks endorphins and the related compounds found in opiates, so that the addicts cant get a high from their drug of choice. But taken in a tiny dose at bedtime, it only blocks endorphins for a few hours while you sleep. This has the effect of boosting natural endorphin levels, as the body manufactures more to make up for a perceived lack.

The reason for doing this is that endorphin levels have a modulating effect on the immune system. Carrying a high level of endorphins appears to calm down the portion of the immune system that is responsible for causing the damage. I have heard it described a by the T1/T2 theory of immune response, that the endorphins encourage a switch to a non-inflammatory method of responding to foreign attack. With this two pronged attack of Copaxone/LDN, I hope we can keep the MS tightly controlled.

Spinal Tap Overblown :P

A spinal tap sounds scary. Or it sounds like an odd music band. But in either case theres not much to it anymore. A 5 minute outpatient procedure. Jennifer had it done last week. The main issue when you have a lumbar puncture is to stay horizontal for 24 hours afterwards to minimize the chance of getting "THE" headache. Apparently you can get a pretty bad one if you are too active immediately following the fluid withdrawal. In case anyone is wondering, spinal fluid is normally clear like water.

Coming up in September we have the first big consult with the doctor. Thats when things will get decided as far as treatment. For now, life is basically normal, and for that I am thankful.

A better day

The course of steroids seems to have done its job. Jennifer's symptoms have largely gone away. There is still some lingering eyesight issues. For example, she noticed she can't track titles of books in the library while walking. But the balance issues are gone, she can drive a car, tongue isn't numb. Definitely in a better place. So now that current issues are mostly resolved, I'm looking forward to the next step.

The neurologist scheduled a Spinal Tap (a "lumbar puncture" or LP in the lingo) in a couple days, and were not feeling entirely convinced of the necessity of it. The doc sounded convinced that MS is the correct diagnosis without it. I think we will be calling the doctors office tomorrow to discuss if this is necessary.

Beyond that we have looked into the cost of the MS treatments....were talking upwards of $1000 a month :o Also we have looked into alternative treatments. There is a lot of information concerning "low dose naltrexone" or LDN on the web. Lots of patient comments, as well as several doctors using it to treat MS and a host of other auto-immune disorders with success. But just like Vitamin D, there is no big study to work from, as there is not money to be made. Naltrexone is beyond patent protection. There are however a few smaller studies that have had success. And there are other things to consider. Would you rather have a daily injection, or one pill to swallow at night? yeah. So we will also talk about this with the doc. Not sure what she will think of it, as its not the mainstream recommended treatment. Dont really know this doctor yet.

Welcome to my blog

Well here I am closing in on the end of July. I had expected July to be a quiet, relaxed month. But it hasn't been. Just last week my wife was diagnosed with Multiple Sclerosis, the awful punchline to two weeks of double vision, lightheadedness, loss of balance and a numb tongue. While its good to know the cause of the problems, its going to be with us for the rest of her life. So I've felt a need to let out the thoughts going around in my head in some permanent fashion. So here they are. In no particular order:

• MS has been around a long time, and up until recently, there has been nothing you can do about it. Starting in the 90's though, there have been drugs available that can actually stretch the time between symptom flareups. So thats good. They are very expensive. Thats bad. They dont cure MS. Also bad. All of them are injections, that you have to take frequently, some as often as once a day. They all have unpleasant side effects.
  

• When I first told my friends about it, the first reaction was, oh I'm so sorry (or a similar sentiment) quickly followed by, "My Aunt has MS". Amazingly, it seems just about every friend I have has a relative or a close friend with MS, except me (until now). When did this become so common? Whats going on here? MS is not evenly distributed around the world. It preferentially strikes women of north-European descent, living in temperate latitudes. There appears to be BOTH an effect of ethnic group, and latitude. This is probably a mix of genetic markers, vitamin D exposure, and diet.

• I hate our medical system. How is it that there have been so many studies on these expensive anti-MS drugs, but no big studies on the effects of Vitamin D? I'll tell you how. Because no drug company will be making money off of a Vitamin D therapy, and its the drug companies who fund most medical research. At least there is supposed to be a large human vitamin D study starting soon.

• My wife has had three IV infusions of methylprednisolone over the last three days. Huge doses. This is supposed to treat the symptoms of her current attack, so we can get back to a more normal life again. She hasnt been able to drive since the attack got bad. It seems to be slowly working, but shes walking around like she's been drugged. Which of course she has. We are hoping in a few days to enter the "Remission" part of the typical MS course. Taking these drugs isnt pleasant, but its better then being handicapped, which is the main goal of MS therapy.

• This sucks. :(