I just wanted to give a quick update and share some news I found out. I saw my "new" neurologist today -- this is only the second time I've seen him. He was previously at Johns Hopkins. I learned more from him today then any of the other 4 neurologists I have spoken to since I got MS.

First, my MRI showed no changes--no new lesions, no enhanced lesions. Yeah!! I just love Tysabri! I've had 22 Tysabri infusions. I'm on every other month since last Dec. I will get 2 more infusions in Sept. and Nov. and then meet in Dec. to reassess whether or not to stay on Tysabri or go on fingolimod. If I go on fingolimod I would stay off Tysabri for 3 months but have one dose of 1,000 mg. of steroids at the end of the second month to potentially stave off any kind of rebound effect until I can start fingolimod at the end of the third month. Interesting, huh?

Second, one of the patients on Tysabri at my clinic got PML a few months ago, although he had the infusion at an infusion clinic outside the city. Very sad. My neuro said that doctors are working on new treatments/drugs for PML aside from plasma exchange, the malaria drug, and steroids for IRIS. A new article came out last week about a PML patient who also received Remeron (antidepressant) but my neuro wasn't very convinced with its success. Anyhow, the neuros at my clinic got this patient into the hospital very quickly (even though he didn't have health insurance) and they gave him plasma exchange, steroids later on to protect from IRIS and used experimental drugs which they had flown in from ?? (I can't remember where). The drugs were flown in and the IRB (institutional review board) approved this all in 72 hours so the patient could take this drug immediately. The patient is now at home and has residual disability--weakness on one side of the body but doing fairly well. He started out with weakness and that is why he called the doctor. My neuro said the goal obviously is to catch PML as early as possible and that once you start treatment for PML, whatever disability you are manifesting is usually the worst you would be left with if you survive (75% survival rate); but the goal is to use the drugs, plasma exchange, and steroids to get you back as close to where you were before. The 3 things he said to look for with PML are 1) weakness on one side of the body 2) cognitive changes 3) vision loss. These get progressively worse over the course of 2-4 weeks.

Third, I learned interesting things about Fingolimod. They are not going to keep the name Gilenia. A new one has not been chosen. He spoke to Novartis and I think he said it will be approved Sept. 21 (if FDA says yes, but likely will). It probably won't become available to dispense in pharmacies until Oct. or Nov. Apparently there is an issue going on with the insurance companies and whether they will reimburse because it is new (and may be considered second line treatment). Or it may be reimbursed since it is "technically" the first pill. He spoke fairly positively about the drug. Of course he said we don't know what the long term implications are of imuno-suppression but the general side effect profile looks minimal for day to day feelings (no nausea, dizziness, fatigue...that kind of stuff). It slows your heart beat only on the first dose so he will keep his patients in the office for the first 6 hours to observe. Initially they were worried about lung capacity diminishing but he said that didn't really show up in any statistically meaningful way. There have been 6 cases of macular edema, 5 have resolved after going off the drug. He will have his patients checked by an opthamologist regularly. He will also recommend skin checks regularly since a few people got basal cell skin cancer.

Generally speaking, he won't recommend fingolimod as first line drug until after 2 years of seeing what will show up. But, he is not adverse to prescribing it and if he had to choose between Tysabri and fingolimod as a second-line, as much as he loves Tysabri's success he feels the safety record is slightly better with the unknown fingolimod v. the possible PML with Tysabri. But again, he seemed open to letting the patient make this choice.

What a day. I'm glad it's over.

Hi EddieF, yes needing a ty fix is very common. I have heard many talk about it. I had it all my 1st year on ty and am not sure when it stopped for me, but it did sometime in my 2nd year. I use to count the days till my next "fix". I recall it well and yes I had a minor increase in sx like tingles... I think you are fine. Please let us know how your next fix goes. Sorry I'm late!

I'm considering again going off ty due to problems with my lungs. I'm always sick and quality of life is low b/c of illness. My GP has run out of of drugs to give me. I've been on Rocephin (sp) shots for over a year and usless antibiotics. We have tried them all till they stopped working. I do not know what to do.

My neuro states my MS is folowing my ilness. They are correct. On the few days where I'm not as ill as ususual - MS is much better. When illness is worse - MS is out of control. I wish so I was like the rest of you. I sould be fine and have a happy nornal life with ty, but I smoked. My mistake - my price to pay.

I am told the MS shot drugs are not aggressive enough and will make me sick. Will they hit my lungs as hard? Or do u think LDN... I'm at a loss here.

I was dxed 2-16 while in attact. 2 attacks since. I just came out of the last one.

Please forget I'm 49 and consider me (due to lungs) 60 plus. What would you do? I doubt few if any will respond - so best wishes to all.

Love and respect always

Pink, I'm so sorry that you've been ill and it's making you sx worse!!!!!!! I have a problem with chronic sinus and ear infections. But, fortunately, they have been responding to antibiotics. I can tell when an infection is at the "I need antibiotics now" stage because my m.s. sx get much worse. Until I hit that stage I drink lots of hot fluids, use a nasal irrigator and sit in a steamy room. I wish the antibiotics had helped you as much as they have helped me.

Does your neuro think the oral meds coming out this fall may help you?????? It's the only thing I can think of. I have heard that the oral med may cause problems with one's heart and liver. But, other reports speak very highly of it. I think your neuro is the only one who can give you a medical opinion on the orals.

hugs,
Shayna

Hi Shayna, I've got puter problems and couldn't hold a connection sooner - on kids now.

Thank you very much for your post. I'm sorry to hear you have infection problems too, but very happy the antibiotics are working. I didn't know anyone had a problem like this b4 your post.

I have not talked to my neuro or nurse about Fingolimod since Dec. Then, he said to put one one this drug was like taking them off a proven drug (with sides pretty much know) to go with one he feels is unproven... I do know if he has changed his mind. I asked to be put on ty every 2mos (so I could get my health up), but was told no. I'm sick now but supposed to go in for ty on Tues and will get & post more info when I have it.

I have read Fingolimod has sides such as lung infection, macular edema, and an increase in skin caner especially for those who have been on ty. Those are my major concerns so far along with the risk of a flairs from coming off TY.

I'm going to try for ccsvi, but hold out little hope there due to my location and cost. Time will tell, but I now am ready to risk it, if I can get it. I know I'll have to be on some drug even if I can get it.

I think Natalie8 has found a great neuro. I really think she is getting great advise from hers,and her posts are extremely informative. I would encourage all to follow them. Thanks again Shayna

I'm ba-a-a-a-ck!
Had an ever so long and lovely vacation. Spent most of it on an island with many screaming children and their sometimes screaming parents. Saw most of my nieces and nephews and grand nieces and nephews and godsons and a younger brother who I resisted fighting with (even though he was an ***!)

I am stiff and sore from too much activity. I swam and climbed and ate and drank too much. It wasn't easy moving 30+ people back and forth with all their assorted gear!

We installed a new sink, finally gave up on the 100 year old cast iron antique that no longer can be repaired. I found a giant used 2 bowl stainless steel sink for $20.00 and it was fitted and installed in a day! Who knew that a stupid sink could make so many young dishwashers so happy!

I came out of hiding long enough to have my 42nd infusion on 08/12. As usual, no problems, no concerns! Still waiting for my results from the JCV test. Sadly, the 50%+= rate is not proving out at my neuro's office. Everyone who has been tested through his office so far has come back positive for JC exposure. I've got my fingers crossed that I will be his first negative!

I did my annual walk, talk, mini mental, etc. and he is still insisting that I at least TRY Ampyra (4-ap) He thinks I may benefit from it since I continue to have spasticity and stiffness (it was very visible when he saw me because I was on vacation and having too much fun!) so I am signed on. He says we will know in two weeks whether it is working for me. I haven't started yet. I wanted to wait until I was done with vacation and for some reason they have to investigate my insurance benefits? I'm going to try it for one month. I hate adding more meds to the regimen but if it works, better living through chemistry!

Hope everyone's doing well! It's back to work for me and I didn't want to get out of my car and go inside the first night back!

When I get my infusion in Sept I will have completed 4 years on Tysabri

RW, your vacation sounds delightful, the part you were physically capable of doing sooo much - the yelling kids (parents) not so much
I am really happy for you
Linda

I had infusion #36...I think.....on Friday,August 20. It was stressful because although I had the card with my appointment listed on it at the infusion center they had me listed for September 3 After a lot of begging and pleading they finally gave me the infusion. They had a bag of Ty for a patient the following week and gave it to me instead. They said they had plenty of time to order Ty for that other patient. I left for Califoria after my infusion so that I could be here for my grandson's first day of kindergarten. I'll go back home on August 30.

My neuro still has not received the viles for the stratisfy 2 test for PML. They don't know when they will receive the viles but will call me as soon as they do. I'm really fed up with this!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I've been fending off another sinus/ear infection for the past two weeks. So far I've been lucky and have not needed the antibiotics but, it's just a matter of time before I need to begin them again. My neuro has no diea why Biogen has not sent out the viles for the blood draws.

RW, I'm glad you had fun. Grammie, I'm thrilled that you're doing so well. Pink, I wish I knew what to tell you. I've been getting so much different information about the oral med I don't know what to believe. I don't see my neuro again until October. I'm going to ask her then what she thinks about it.

If I don't make it into thje stratisfy 2 program before it closes I may say the heck with it and go off the Ty. I I don't like feeling like I'm playing Russian Roulette. Ty has been good for me but I don't like knowing there is a blood test to see which patients are more susceptible to PML and I may not be able to get it because Biogen is dragging their feet. From what I have read those patients who are diagnosed with PML quickly have a much better chance of surviving with little disability. But, that doesn't change the way I feel about the blood test. If I don't receive it I don't think I will remain on Ty. This is simply too streesful

I'm sorry but I'm just feeling extremely stressed over everything that concerns m.s. and the only thing keeping me sane is the time I'm spending with my grandchildren.

hugs to all ,
Shayna

Ready?

My phone rang this morning at 8:00 a.m.
I am usually asleep or on my way to bed at that time but today I was right next to the phone so I grabbed it.

It was my doc. He said "I NEVER call patients to give them test results, but I just had to call you and share this. You are my first patient who was tested for the JC virus who had negative results"

I was speechless and he started laughing. He says it's the first time I ever had nothing to say.

I let out a whoop that all the summer people in my neighborhood must have heard and did some of this:



He said he remembered that I told him I would be his first negative patient when he did the draw for the test. I am the only one who has come back negative so far and he was getting discouraged by all the positive results that he had to tell people about.

He cautioned that I have to remain vigilant and that we don't know what the test means yet and that there is a 2.5% false negative rate, we don't know how the virus is transmitted, etc, etc, etc. and that the next test will tell us more, but that as far as he is concerned, there will be no drug holiday if I don't want one!!!!

I told him that was a good thing becaue I was having a hard time with the fact that I had agreed to let him be the doctor if I was positive.

I just had to share! Now I am going to bed cause I have a date with the Yabbit this afternoon. She has an appointment with my doc and we are going to meet and eat afterwards-- our favorite activity!

I wish you all a solid, heartstopping moment of overwhelming joy today, like I had this morning!

Yabba dabba do, so glad for you!!!!!!