Gilenya and the Immune System

[As4OurHaus]

I have been on Gilenya since December 2011 and for the most part I am glad I switched from Rebif. I was having headaches all the time, and lost much of my singing voice (weird, I know). The headaches and the voice are much better, but because my immune system is so low from the Gilenya, I just have to look at a sick person and I get what they've got. I have even had pink eye twice! Right now I am struggling with a really bad chest cold. Anway, I am wondering if someone who has been on Gilenya for a lot longer than me can tell me if the white blood cell count goes back up? I really don't want to go back to Rebif, but I also don't want to have to wear a biohazard suit every time I leave the house (ha). Thanks for your input!

[shalimar]

I have been on Gilenya for 11 months and my white cells are 3.1 as of yesterday. They have gone up .1 every three months; not greata I know, but my doc seems to think they will creep up slowly since he has me taking a Gilenya pill every other day instead of every day like before. I try to watch being around anyone sick, I use an alcohol wife when I go shopping on the shopping cart, etc.

[nappy]

This is exactly what has me worried about starting G.

Last May, I had an MRI and was told from that and that I had 3 flares in a year- that the Copaxone wasn't working as much for me anymore.

I could pick Gilenya or Tysabri. I really pondered both and finally settled on the G.

But I teach second grade. I am rarely sick with anything other than MS stuff but i know my enviroment has to be crawling with issues.

I use purel and clorox wipe everything and often, but at that age they hold you and your hands all the time. They also sneeze, cough, you name all of me and everything else.

I am in the washout period from the C and just had my first chicken pox vaccine so I have a little over a month until I start the G.

I am worried that I will be setting myself up to catch whatever walks in the door.

Do you know how quickly your immune system drops?

Thanks and good luck.

[mfog023]

I have been on Gilenya for almost 9 months now and doing amazing. Most of my progress has been on my right side but I am seeing improvement with my left though very slow. A snail moves faster. There is also additional progress in my reflexes, etc.

There were some side effects in the past but they slowly stopped. It greatly hit my immune system and it felt like I caught everything which would go to worse quickly. As a teacher I am surrounded by germs so a weakened immune system was a little scary. Kept my environment clean with Lysol. Also the kids knew I could get sick easier so they were coming in and washing their hands and keeping fingers and hands away from faces. The kids did not know the why's but amazed me with how much they cared.

Last month I had my regular blood test to monitor my leukocytes and liver. Results indicated no increase in liver enzymes and my count had rebounded to 4.1. Also no issues with my heart rhythm.

So there is good news at least for me.

[nappy]

That is good to hear. I hope you continue with your increase in your counts. I am still in the wash out period from the Copaxone. I have one more chicken pox shot next week. Then we will see.

Have a great rest of the school year!

[cosake]

I've only been on G for 2 months, but my family has been sick multiple times and I have not so far. My first blood labs came back fine.

@ shalimar - I had to chuckle when I read that you use an "alcoholic wife". Auto-correct and typos can be so funny sometimes !

[Branson Mom]

Gilenya or not....

I was dx w/ MS in 1997, I think I probably had it for 3-5 yrs because of the undiagnosed but ever re-occuring symptoms (idiots). Finally a golf cart accident did bring about the appropriate tests (and those were by chance) & the dx.

I was treated with Amantadine for all these years to help with my gait problems, it worked great. However, about 2 yrs ago I started having other fun symptoms, pain, leg spasms & cramps, memory & cognitive impairment, etc, but since the neurologist I had left because our local healthcare facility (a virtual monopoly), Skaggs, are idiots, I've had to deal with a rotation of visiting neurologists. Today was no different except this one was a male and this one wanted to put me on Gilenya ($6,000 a mt he said).

I won't do the infusions, just won't. Don't even like to take oral steroids because of what they do to my already compromised immunity system (nothing like having a disease in which your own body is the enemy), but at least the symptoms of steroids are predictable. What I have read today tells me Gilenya is not.

So, I hear heart problems, even for those who do the 6 hrs at the doc's office etc; the fatigue, headaches, but what else is there?

I also read it is like one in a thousand or whatever has a cardio-related problem (and some die as a result). As a retired therapist and researcher I know the drug has not been out long enough to get a REAL feel for what it can do regarding side-effects, etc. PLUS, the FDA releases these drugs now far to early with way too little data. The point is, I expect the number to go UP and I don't want to be one that goes DOWN (like in a grave).

HOWEVER, I am trying to be open-minded and as such, I am seeking good (GOOD) and relevant (RELEVANT) information as to ANY and ALL forms of treatment people have tried, including Gilenya. What worked, what didn't. How did it work, how did it not work. Etc, any information relevant to the treatment of MS will be helpful. I'm not asking a doc or drug company, they have agendas etc, I'm going to those like myself who have M.S.

Also, I read in the RemedyMD magazine in the neurologist's waiting room that 80% of those who have been dx with M.S. for 20 or more years ends up in a wheelchair, etc -- I am looking to get that info too. (1) Are you unable to walk unassisted? If so, (2) how long after you were dx did it happen? (3) Was it permanent? (4) What tx did you have prior to this that may or may not have delayed it?

Thanks ahead of time for all those who read and even more so for all those who respond.

Branson Mom

[Just a small town girl]

My relationship with my lymphocyte and white blood cell counts has been a love/hate relationship since starting Gilenya. Sometimes the counts are perfectly within range and other times they're too low. Invariably my body kicks back to within range before any further action is needed, but this has happened at least 3 times now in the 16 months that I've been on the drug.

Since starting Gilenya I've had colds and other bugs more frequently and they definitely last longer. I've got a very mild disease course right now so my neuro and I have talked about going to something else, but the Gilenya is working and until something more effective comes out, I'll be sticking with Gilenya.

[shalimar]

Sorry about the 'wife' - i meant 'wipe', hee-hee! Just had another blood test Tues. and it dropped to 2.7 from 3.2 on March 1! And I am on a pill every other day now. I will have yet another b.t. in a month, and if doesn't improve, he will take me off Ginenya and we will wait for bg12.

[DecGrl]

Branson Mom, I wanted to answer you question. I was dx 20 years ago, I have foot drop and wear a brace (afo) I have used a wheelchair only when we go for a long walk. When we go on vacation I'll use it because it would take me forever to walk anywhere. And I'm not tired once we do get there.
About gilenya, my dr wants me to go on it, but my ins co denied it. Don't know why, but after hearing the negatives I'm not so sure about going on it. I'm on copaxone for 2 years now. Was on betaseron before that.

[juju221]

Waivering also....

Branson Mom, I wanted to answer you question. I was dx 20 years ago, I have foot drop and wear a brace (afo) I have used a wheelchair only when we go for a long walk. When we go on vacation I'll use it because it would take me forever to walk anywhere. And I'm not tired once we do get there.
About gilenya, my dr wants me to go on it, but my ins co denied it. Don't know why, but after hearing the negatives I'm not so sure about going on it. I'm on copaxone for 2 years now. Was on betaseron before that.

Wow, DecGrl, you have the exact symptoms and mobility aids as I do. I also use a cane and when really fatigued I use a walker. My balance is also an issue. It's just been a little over 1 year and 4 mos that I've been on Copaxone. I was diagnosed in Jan 2011 but was experiencing symptoms since 2005 (looking back maybe even 10-15 years prior but didn't realize them as sx since they either went away or were diagnosed as something else). I started therapy in March 2011.

I just had new MRIs done and my neuro just recently recommended Gilenya. I agreed to start the process for authorization for Gilenya, so I don't know if the insurance will cover it yet, but wonder if it's the right decision as well because of negative side affects mentioned. Needless to say, I called them today to tell them I changed my mind. This neuro's office was part of the clinical trials for Gilenya and they said they saw alot of good results. Now I'm re-thinking this again wondering that maybe it may help.

I keep looking at the MRI reports which bring up some other questions. The radiologist was comparing MRI reports from 2009 and 2010. Reports said "No new lesions on c-spine or brain, but numerous lesions in the mid and upper t-spine appear slightly more prominent than noted in Sept. 2009, however no evidence of exacerbation". What about the MRI from 2009 to the one done in December 2010 (pre-Copaxone)? I haven't had any side affects except the normal injection site ones. Have I given the Copaxone enought of a chance?

Not sure how old you are but I'm 57. I guess the real answer I need to find is how many of the side affects do I want to subject myself to, and do I want to spend the money if the insurance doesn't cover it without it being a cure?

[bri]

do you believe in honey?

I'd been on copaxone for 7 years and switched to Gilenya this January. I've been having a tablespoon of honey every morning for the last 5 years and have not had a cold once. Since Gilenya, my white blood cell count is down so I am concerned about the compromised immune system, but so far, have not fallen sick or caught anything since January. I attributed it to honey. I have no proof and it could just be something else like luck but I really do believe it. Back when I was young my doctor prescribed honey each morning to fight my chronic bronchitis (and it helped; by the way, it also went away in adulthood). So I think it was that idea that came to my mind when I started taking honey again. It was after having a terrible throat infection five years ago that reminded me of it. And I've been upper-respiratory-infection-free since. I just wanted to share.

[Sara Angela]

What are ya'll doing to boast your immune depressed systems?

Sara