Apr 272016

Another new drug for MS. What I find interesting about Ocrelizumab is that it was originally being tested as a drug for rheumatoid arthritis but stopped because of an “association” with infection. How far is it shutting down the immune system that it was causing infections? I would think this is a red flag for future cases of PML.

On the plus side taking Ocrelizumab only twice a year has to reduce the risks significantly for dangerous side effects. The article I saw compared it to the safety of Rebif, I am highly skeptical of that claim. Though if it is as safe as they claim it would be a great drug, and everything we had hoped for from Tysabri.

Nov 272015

Picture of what the auto-infuser looks like. It takes an Hr. for it to complete.

First off the steroid treatment went better than any other had gone in the past. I did not have the horrible bad attitude, well no worse than normal, and my tastes were not negatively impacted. Day one of the prednisone went very well. The nurse offered to leave a permanent IV needle in, but it would be in my hand. I told her I do not mind getting stuck, my mistake. Day 2 a new nurse it took 8 sticks before she was able to get a vein that worked for her. This was not the first time tis has happened while I have taken prednisone. Apparently prednisone does awful things to your veins because normally I am a very easy stick. Unfortunately, day 2 was not yet over and because she ran out of IV needles and had to switch to her personal supply of butterfly needles I moved and the injection became occluded. I was 2/3 done with the IV and she asked if I wanted to quit for the night; I think it was pretty clear she wanted to call it a night and not battle getting another IV in me. I told her no I wanted to finish the medicine and two sticks later I was ready to go with a stern warning not to move. 🙂 Day 3 went much better.

In the interim I am supposed to have blood work done to test for the JVC antibody. I tried twice and lost the lab slip. I have to assume that was for the best because getting the lab work done is a waste of money. I do not plan on taking Tysabri or Tecfidera that carry the risk of PML at this time. The Dr. did think that Tecfidera was a good option for me at our previous visit. I do not plan on signing up for the Death Therapy as a treatment.

I will not do the interferons because I think they are garbage, and they did not do much for me. That only leaves Copaxone as drug, or nothing. We look up Copaxone and learn as much as you can without a full understanding of the immune system. 🙁 I also look up how much it will cost through my insurance. The drug is roughly $5,000 a month with a copay of $150. The $150 is doable, but I am on a high deductible plan so on January 1 I would have to eat the $5000! If that is the case it is a no go.

Off to the follow-up with the neuro. A minor exam and in his professional opinion I am walking better. I guess that is why he makes the big bucks because I had not noticed my walking had improved. 🙁 The rest of the brief visit was discussing Copaxone. I told him the $5000 price tag, and his response is that it is a very expensive drug to make it is not all profit. He sounded like a drug shill from Teva. If that drug costs more than $5 to make I would be shocked almost to death. There is obviously good money in drugs so I need to continue my own drug research. MVT with the proper marketing certainly can help a lot of people. 😉

To wrap this all up Teva/Copaxone called today. They wanted to discuss the initial setup with me. I said that is fine, and we got that all worked out. I then brought up their $5000 per month cost. She said that they can eat the first part for the high-deductible plan and possibly the copays from then on. I thought OK as they are gouging my insurance and I am making my insurance more expensive for everybody in 2017. 🙁

As a postscript I was looking at Tecfidera on the NMSS site. I could not shake the BG-12 name it had before it was Tecfidera. I was certain I had written about it, and I had. BG-12/ Tecfidera was a Mold Killer! Who in their right mind is going to take a mold killer as a treatment!

Jan 192015

The Neuro thinks I need to be on a medication and it should be an Interferon. It should be fairly well established what I think of the Interferon class as a whole. In the office we got off on a slight tangent when Eriksgirl stated that they do not even know how the Interferons work. His response was because you do not know does not mean I do not know. Normally I would agree but on what level is this drug working? Furthermore, I have to come back to my older post that they just do not work.

I guess I should be fair the Neuro is equally OK with Copaxone. Unfortunately I know very little about Copaxone, and I am not really interested in finding out any more. 🙁


The box for Aubagio looks like birth control piils. Maybe as a warning NEVER GET PREGNANT WHILE USING!

Interestingly the Neuro is categorically against all available oral medications. His reasons was not that they are not effective it was that none of them is safe, and this is from a doctor for there is a time and place for Tysabi. He does, and has, prescribe the medication with varied results. I cannot remember all the oral drug names so forgive me. One patient he was treating the oral drug was

causing stomach issues and I think sleep issues. He did not say the drug killed her, but it did not help. Then of course the death with Gilenya, and if I recall correctly that happened on dose #2 after the supervised dose went fine. I believe the drug Aubagio was of special note because it carries a pregnancy Class X for men too. He said he would never prescribe Aubagio to a male and never to a female before menopause.

Long before this visit Eriksgirl wanted us to go on a gluten free diet. She is sure I would feel better. I agreed that if I ate better I am sure I would feel better. Eating better should help regardless of what I am suffering from, MS and or Lyme. She then purchased The Wahls Protocol which at this point I have only flipped though (and it scared me :-). Good news is the Walhs diet is clinically proven to help with MS, but do not ask me how much because I have not read that part. Eriksgirl, who looked at the book more than I have, agreed we should not start there, that was like jumping way into the deep end of the pool (can I swim?) but we should start with the paleo diet instead. I agreed and we have a friend who has had to be on a paleo diet for a while now, former vegetarian, and it fixed her problem, related to carbs I think, and in the minimum she is a good resource. The thought is the paleo is a segway to Wahls. One baby step at a time. 🙂

A couple addendum here. I will try not to post images of what I am eating. I am not on Facebook, but I hear that is a thing. I also told Eriksgirl that if we are going to get a blender for this new diet it cannot be a Vitamix because the blenders have a cult following. I do not want to be in the Vitamix cult. I think a Blendtec, etc. would be more than adequate. I know a blender sounds weird but Eriksgirl has Vitamix friends, I will not join. 😉

Aug 242012

That time of year for another neurologist visit. You would think it would be boring since all I am treating is my seizures. Since I have not had any seizures the medicine is working and I should just be in and out. That was not the case. I am not interested in treating MS at this time but the neurologist take is upon himself to do some neurological tests, etc., maybe so I get my moneys worth. 😉 Continue reading »

Apr 042012

As I have been reading all the stories lately about the growing lotto jackpot size, and ultimately went up to $500 million I thought it was worth discussing. I have played the lotto in the past and no surprise lost the lotto. I knew going in that I was going to lose, but it was only $1. I wanted some images to go with this post and I had some unredeemed lotto scratch offs that I received as a gift so I “reinvested” those into the lottery. I met a guy in line and we briefly discussed the lottery, and he commented that people who play the lottery are bad at math. I have thought that for a while. He also said that if he had won the big lotto he would have bought all the pants in the world; so we could all be pantless? I was glad he lost and was wearing pants; sometimes it is the small blessing you never even knew about! I told him other than being bad at math I think people play the lotto out of desperation and hope. In the end rather than being a “poor tax” or a “bad at math tax” it is probably a “desperation tax”. Sad.

MS has mostly been a frustration for me unlike many other people who have it much worse. On the other hand I think people play the lotto with their MS treatments too. I think the treatments themselves become a source of hope. At least I am doing something. I remember feeling that way when I started Rebif that it would stop the progression, and the disappointment when it was not working well. I quit Rebif because it did not work and it was a disappointment. As critical as I am of Tysabri I would probably be giving it a try if I was steadily declining. It is possible that I would consider taking Tysabri even if I tested positive for anti-JCV antibodies. Unlike the lotto with MS drugs you stand a much better chance of something happening (and much like lotto winners always go bankrupt MS medication can help get you to bankruptcy). It is sad that desperation sometimes drives our decisions.

Feb 292012

I was pondering my use of Ambien today after reading a study that prescription hypnotics have a nasty “side effect” of death and cancer. Maybe I missed that when they were quickly listing off all the other side effects of Ambien in the commercials and literature, but it seems unlikely.

I seem to recall getting started taking Ambien when taking Solu-Medrol many years ago. I guess it all makes sense now. I hated Solu-Medrol, I just did not realize that the drug I was taking with it to sleep might be even worse. Fortunately, I never liked Ambien and wanted to try and drop it as soon as possible; that and it was pretty expensive at the time. The last time I took it was after I was “stuck on it” because quitting lowers your seizure threshold (another of its many side effects). While I certainly do not have the best sleep habits I think it is well worth modifying those before taking a sleeping pill.

So now we know that hypnotics are pretty bad the real question is which is worse Ambien or Tysabri? What happens if you are doing a “combination therapy” with the two drugs?

Jan 232012

In other words we are killing too many people so we need to add additional safety language. Rather than just reading the news article I went to the FDA website to look at the new disclosure. Additional Information for Patients. The change revolves around testing for JCV antibodies, but even negative you can still end up getting PML.

What immediately struck me was that “201 cases of PML have been reported among approximately 96,582 patients treated with Tysabri worldwide through January 4, 2012.” Or a little over .2% of the patients.

The other thing I learned about Tysabri is that it is a “risk” to take it longer than two years. This puts it into the category of the most aggressive chemotherapy drugs because if you take them longer than that they definitely start causing cancer. Tysabri is an immune suppressant so does it definitely cause cancer after more than two years or something else (e.g. death)?

I know Tysabri is effective, but taking everything into account I do not see it as a net gain.

Jan 212012

I see in the news that the oral Multiple Sclerosis medication Gilenya appears to be tied to eleven deaths. It appears one person may have died after the very first dose. If there is a plus side than it sounds like it is a much more peaceful death than Tysabri’s PML. There definitely seems to be a correlation between an MS drugs efficacy and risk of death.

I still stand by my previous post that life is more than just avoiding disability. No one wants to be disabled, but I do not want to risk my life to avoid disability. I have also heard the statistics argument that death is not that likely on these drugs, but I do not want to play that crap shoot. Good luck to those who take these drugs.

Apr 282008

The only reason I continue to see my neurologist is because he treats the seizures. The reason I was not looking forward to this visit was because I was going to have to come clean about not treating the “Multiple Sclerosis.” When I suspected Lyme I brought the issue to him first, but he then referred me to an idiot infectious disease doctor. Because I did not see his doctor, and kept him out of the loop, he knows nothing about my Lyme diagnosis and treatment. Up until now he has incorrectly assumed that I have continued to take Rebif to treat my MS. The neurologist made it clear from the beginning that Lyme was outside the scope of his knowledge; keeping him in the loop would have turned into a unnecessary (narrowly avoiding an expletive) nag fest about the Rebif (it did digress somewhat to that point later in this visit). I brought Eriksgirl along to help keep up the fight. (Normally a visit is a quick follow-up and nothing of substance is discussed; no real need for Eriksgirl to be there and taking up her valuable time.)

We get the neuro brought up to speed that I am getting treated for Lyme, etc; leaving off the part that he referred us to an idiot. At first he wanted to move me to Tysabri because I am apparently doing so poorly on Rebif. At this point I came clean about not taking Rebif, which he could not handle; even with a Lyme diagnosis that is being actively treated. He then went on to add that because it is a vision problem he wanted to treat it aggressively and prescribe steroids (Solu-Medrol); though surprisingly not at this appointment. Of course I would not take steroids because they would only make things worse with Lyme due to immune suppression. Since he did not want to prescribe them now, but wait until the next appointment, that at least saved another argument. While he did fax in a prescription for Rebif it was a concession to avoid fighting. Also, they sent the prescription to MS Life Lines which was the wrong place to send it at this point; so that pretty much ended that issue pretty easily. I have an appointment coming up soon, and Rebif will probably come up. I will tell him I am pursing another path at this point, but that is for another upcoming post.

What I was interested in was idiopathic intracranial hypertension as a potential cause for my blind spots. Eriksgirl had already suspected I had higher spinal pressure because she had never seen spinal fluid tubes fill up so fast (she used to assist with lumbar punctures) when my fluid was drawn after my first seizure. Of course my spinal pressure should have been taken at that time; even though it wasn’t an ordered test. It is just good practice that if you are in that area you take spinal pressure. High spinal pressure can cause seizures. The neuro said that he didn’t think it was IIH induced blind spots because those blind spots (tend to be?) are around the optic nerve. I’m not fully convinced, but he is not ordering the test. Regardless, if it is Lyme induced IIH than the fix is antibiotics which I am already taking.

The neuro’s theory is a lesion in the brain causing the problem. Maybe. MRI time. At least it will be nice to see how the grey matter is doing.

Apr 212006

or so it would seem for some select vocal members of the Multiple Sclerosis community. In the latest edition of InsideMS there was an article on the people with Multiple Sclerosis voicing the support to the FDA for Tysabri’s return. [PDF version with both quotes] (For the record I have no stance on Tysabri. I am doing too well to take a drug this new on the market). What I found most interesting, and upsetting, about the article was two quotes from fellow MS’ers. Barbara Cooks: “Tysabri was easy to take, and it improved my walking and mobility. I’m not afraid of dying; I’m afraid of living as a burden to those I love.” And Marcy Canavan “Quality of life is more important to me than quantity of years lived.”

My suspicion is that these views are not really well thought out, or is mostly rhetoric to get the desired result of a return of Tysabri. Regardless, what I dislike is the radical devaluation of life, and those with disabilities, in their quotes. Quality of life is more than being able to walk or use your hands or any number of other activities. I certainly would rather not be disabled (or seriously disabled in the future), but I definitely would not rather risk death than be disabled. Secondarily, I think it devalues the lives that people with disabilities live every day, with many having an excellent quality of life – some certainly even better than people without disabilities. The idea that quality of life revolves around a lack of disability is a very poor view of quality of life. If a person would let a disability ruin there quality of life, and define their life, then they have really let the disability/disease win.

I do suspect that their attitude is simply a reflection of a much larger problem of the view of quality of life in modern times. I guess the question becomes has Singer’s philosophy become this prevalent, or is he simply echoing the subconscious of the masses (in a more philosophically consistent way)?