It’s my party and I’ll cry if I want to

The other day, my Best friend Gary and I had our overdue ‘catch up’ conversation. I’m not sure if I have said this before, but Gary lives halfway across the country and most of our time spent together is on video chats.  Our friendship began in a facebook group about Tysabri, and has continued for more than 10 years.

During our “catch up call”, after we talked about each of our grandkids and our children, the subject of my health, more specifically two of my recent posts, Are you prepared to Die? and Are you ready to Live?,  came up. While Gary understands my fears, he is concerned that I may have scared other people (especially those newly diagnosed with Multiple Sclerosis.)  He feels that someone reading my posts may feel that because they have ms, they will die.  I quickly argued that I only wrote the truth.  I never said that MS kills people.  (At least I didn’t think that I did.)  I AM SCARED!  I don’t like my choices.  I honestly feel that I am playing Russian Roulette and I am MAD!  BUT, None of that excuses the fact that he may be correct.

Before  I continue today…..

I want to apologize if I have mislead anyone, making them believe that being diagnosed with MS is an automatic death sentence.  While I feel that this may have been true many years ago, medical advancements and scientific research have made LIVING with MS much more manageable.  However, I promised myself when I began writing this blog that all of my posts would be honest, no matter how embarrassing or unpleasant they may be.  I would talk about the uncomfortable parts of MS in addition to sharing tools that I have found to make living with this MONSTER a little easier. I believe that 80% of the time, I prove in my writing that laughter IS the best tool I have for managing living with MS and the many other injuries I frequently obtain.

Today however is not that day.  Today I am angry!  I am angry because even though we can try to take steps to live more comfortably and possibly slow disease progression, the disease ultimately has control.  In the post “are you ready to live“, I said that I would be doing more research into the newer MS drugs available and I have.  When I am done VENTING here, I will share my latest conversation with my MS specialist about my concerns and my next steps.

But first please take a walk or a read with me, and see my fears through my eyes

First drug on the table…. OCREVUS  (the full list of potential side effects can be found here.)

What sticks out to me are these words…

OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections.

Progressive Multifocal Leukoencephalopathy (PML): Although no cases have been seen with OCREVUS treatment in clinical trials, PML may happen with OCREVUS. PML is a rare brain infection that usually leads to death or severe disability.  ( remember this is the reason I am being urged to stop Tysabri)

and finally

OCREVUS may cause serious side effects, including:

  • Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer.

My brain does silly shit here.

Ok Cancer? …. Just keep having mammograms, if I get it, just get a boob job. (That’s what I did when I had cervical cancer)…. just take it out!!!!

PML, are you fucking kidding me?

and Herpes…hmm  How do you see this conversation going, “Um Einstein, would you care if I took a drug that could give us both herpes”?  Let me save that prospect for Valentine’s Day don’t you think?  Before I even talked to my doctor, sadly enough the deal breaker for this drug, was that Thing 1 said I wouldn’t be able to kiss my grandkids anymore.  “Mom you know that herpes can be lethal to babies right?”… um no I didn’t, in fact I don’t know much about it at all.

Next drug on the table, Aubagio (teriflunomide)

Severe liver injury including fatal liver failure has been reported in patients treated with leflunomide, which is indicated for rheumatoid arthritis. A similar risk would be expected for teriflunomide because recommended doses of teriflunomide and leflunomide result in a similar range of plasma concentrations of teriflunomide.

Hair Loss

Maybe I should be embarrassed that I wasn’t so worried about the fatal liver failure as I was about the hair loss,  but again I am being honest.  YES I know it sounds pretty vain.

My research of the above mentioned drugs, also talking to other patients that have previously been on Tysabri and switched to Ocrevus or Aubagio.  70% of the people I talked to regretted switching.  They stated that they immediately went downhill after the change.  I also discovered there are now several studies being conducted about The “Rebound Effect” after stopping Tysabri or the development of “IRIS” (Immune-reconstitution inflammation syndrome) which can also be fatal or cause rapid acceleration of disability.   Did I mention this news really made me angry?

Last week, I got the results of my JC virus retest back.  It was not a false positive. 😦  In fact it is a pretty high positive.  I sent my doctor an email to discuss the information I had been hearing/reading, and asked him to call me back.  When he called, the first thing he said to me was, “I don’t believe you have PML and just because you are high JC, also does not guarantee you will get PML but it greatly increases your odds”.  I shared my concerns about changing drugs with him.  He did chuckle when he responded that Ocrevus does not cause a sexually transmitted disease, or breast cancer.  The herpes virus that they are speaking of is shingles…EWWWW I had chicken pox at 25 and was hospitalized because of the fever and hallucinations.  I hear shingles are many times worse.  He also explained that Ocrevus does severely weaken your immune system though making you more susceptible to cancers and other infections.  The final concern with this drug is that it does not provide the “energy burst” that you get after receiving Tysabri.  Often times it causes the exact opposite effect.  😦

Next we discussed Aubagio.  He feels that not only does the drug not possess the strength of even the previous MS drug I was on. (that didn’t work) but also because it is a pill, my body may not respond to it because I also have Gastroparesis.  How did I forget about that?!?!?

Well crap there goes the next drug I had started reading about, Mavenclad.  SMH.

BUT, There is another up and coming drug for MS (not yet named) that is delivered in the form of a monthly shot. That may be something to consider.

The doc, I call him the wizard, and I decided that I should still have new MRI’s done to rule out PML. At the very least, this will give me a new baseline for the activity of my disease.  He has also ordered all of the blood tests required for each of the drugs I was considering to see if I am even eligible.  For now, I am going to stretch out the time between my Tysabri infusions to every 6 weeks instead of every 4 while I make a rational, NOT angry decision.

The girls and I are going to a drug talk hosted by the makers of Ocrevus in the beginning of March.  If I do change drugs, it will probably be to this one.

I do realize that being angry doesn’t solve anything.  It won’t help me make a decision any quicker, and it won’t change the outcome of any decision.  But I am angry and it’s ok.  I do believe feeling anger AND talking about it is part of the process!

A little over a year ago, (maybe two years ago) I made two videos on Youtube.  One is My story about how I was diagnosed with ms, and the other is what I still feel is Good advice for someone that is newly diagnosed.  I went back and watched them the other day and they helped ‘calm me down’.  They also reminded me of what I have been through, and what I have survived.  If you are interested, please take a look but clicking on the above links.