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
 
http://pinkunderbelly.com/2011/03/27/when-you-suspect-mrsa/

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 102015
 

I Feel much better than the Neuro says I am

I had an MRI at the last visit and Eriksgirl noted that it was different, my hands bent differently, etc. My neurologist said he could not comment without a MRI to see if therre were changes in the brain causing the change so off I went. When I asked all he could say about that is your MS is progressing. think that was his way of saying I do not have a clue and blame something I have been diagnosed with. The safe non-answer. 🙁

Now we get to the glass-half-empty Neuro vs. glass-half-full (me/Eriksgirl). He was very displeased with there being new lesions in the brain. I was pleased there was not an aneurysm from my kids! 😉 We then proceeded to discuss drugs for a while, he heavily prefers the injections. He then said than I need to get on a drug before a lesion puts me in a wheelchair. Later Eriksgirl said she was thinking he pulled a violation for jumping straight to wheelchair rather than a reasonable progressing disability. That seems fair to me and especially true based on past visits.

We also had a talk about Lyme, which he mostly dismissed. I have tested positive for Lyme so I at least had it at one time. He said he could be wrong and was willing to refer to someone else to look at other causes of my lesions. The person who he was going to refer me to was of course a specialist in MS. Pursuing that seemed a lot like going to a Ford dealership to have them discuss all the makes and models out that could best fit your needs, and then you are little surprised when the best one is a Ford. I had to decline that offer as I had in the past.

I left without picking a drug, big surprise, and I told him I would get back with him.

Aug 262012
 

I think Canada study brings up a great question because in hindsight are interferons even a rational treatment? What are the interferons treating? Interferons are not the best understood thing in the body, but importantly they are already made in the body. Why when we are already making interferon b1a do we want to inject more? And if I recall it made out of Chinese hamster ovary cells. I was never checked to see if my interferon levels were low and needed boosting with a shot. Furthermore, in the body interferon is made as needed as an immune response to viruses, etc. Is the contention with taking the interferons that I have an infection that they will fixed. I certainly know the injections certainly never kept me from getting sick with other “infections.” Continue reading »

Jul 192012
 

I guess not based on how much I had to pay for Rebif, just worthless in efficacy in preventing long term disease progression. What I do like is that they used all records of people on the drugs and those off and compared results. Overall it was a fairly large study and can be repeated elsewhere. In the minimum it does not bode well for the Interferon users for MS.

I liked this quote: “Researchers are quick to point out that this is just one measure of these disease modifying drugs and there is still potentially significant benefit to patients.” Maybe I am missing something. I thought one of the key purposes of taking the drugs is to prevent disease progression. I certainly did not enjoy taking a shot, and would not consider it a benefit. I did not enjoy the site reactions. I did not enjoy the side effects. What else is left? I was even tested for Rebif antibodies because Rebif was not working that well at controlling lesions. Now we may know why! 😉 Now I wonder why did did these drugs ever make it to market? Will the FDA just rubber stamp anything?

I am in the wrong business. I need some seed money to start a drug company. Obviously the drug does not have to be that safe or even work to get approved. I am thinking about sweet tasting pills like M&Ms but medicinal. 😉

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.

Jun 232010
 

After the results of the MRI I got a call from my neurologist’s office with the results, albeit a little slow. It was his medical assistant and she gave me a brief synopsis of “it is bad.” She also added that the neurologist wants me to resume Rebif (aka whatever I was taking before). He was aware that I had quit to get treated for Lyme (he did not approve). In reality I had quit before I knew about Lyme. I had grown to hate taking Rebif, and it is not like it does not have any nasty side-effects (cancer?).

I started Rebif when I was diagnosed with MS because it was the “best” drug at the time. I was very optimistic about this treatment. As time progressed and many MRI’s later the Rebif was not working real well. My first neurologist ordered a blood test from Athena Diagnostics to see if I had developed antibodies to the interferon. No antibodies. I continued to take Rebif; in hindsight I do not know why I continued taking an expensive drug that did not work well.

The test from Athena was a waste. It provided no useful information and the test was “expensive.” The test should not have been expensive the core cost was $1000 with a $200 charge if you paid cash, but they said they would bill my insurance. The claim was rejected because they did not fill it out correctly. I called them and they said they would re-file correctly; I never heard from them again. Blue Cross would have paid 100% for that test if they had done as they said they would; they lied. I got a call from a collection agency wanting the $1000 years later. I offered the $200 cash price. They eventually gave up calling. They can get the $1000 from my cold dead hands.

Damn Rebif. Damn Athena. Damn their billing. Damn Lyme.

Aug 042009
 

As I was flipping through my latest copy of MS Connection the headline “New Study Reports Reduced Overall Cancer Risk in Patients with MS.” Of course reading the article this only applies to “several” cancers and “particularly” women. Odd.

What I found most interesting is the higher incidence of brain cancer in people with MS. As the article states the cause is unknown but they note: “may relate to the increased surveillance and diagnostic workups such as MRI that people with MS are more likely to have compared to those without MS.” If the MRI can give you brain cancer so can your cell phone. Everone “knows” that cells phones don’t give brain tumors why entertain that MRI’s can. What I find most interesting is leaving the MS treatment drugs off as a very likely culprit for causing cancer. Since we know that suppressing the immune response to the brain prevents the necessary immune response to cancer cells suppressing it could cause cancer. I should note that this is not new news that MS drugs cause cancer as I dismissed a study in 2005.

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 222006
 

Now that Paula.Rothstein@medicinefreeliving.com has both SPAMed my email, and the blog, maybe Natural Cellular Defense will be the next Ambrotose! 😉 The name of her site did make me think of the emails (from fellow MS’ers) advocating going medication free, and spurned this post as a corollary to Death Before Disability. I have wondered if Rebif is harmful over the long term, and Eriksgirl and I have had many conversations (some very recently) about its safety. Of course everything seems to indicate that it is probably OK, but in the end it is operating as a immune system depressant. The Tysabri combination trials certainly reiterated what can happen when the immune system is suppressed too far, but what happens long term with just a little (well at least less than the combination therapy). Am I going to be worse off because of taking Rebif with a nasty cancer, or some other disease, that in the end is much worse than the Multiple Sclerosis? In my experience I’ve never found any medical intervention to be a “free ride.” Certainly not thoughts that get me in the mood to take my injections. I guess on the plus side I took the week off from injections as I was recovering from a viral infection, and didn’t want anything slowing my recovery!