Giving Up

[RockysMom]

I've decided to give up on Tysabri. I've just read some scary articles from a little less than a year ago saying how increased risk for PML is being seen and that tests (titres) for JCV are giving false negatives.

My infusion center won't even send my blood to the certified lab for it. They insist on doing it within their system and a titre is such a wishy washy test anyway.

Plus no one at the infusion center bothered to tell me about Biogen's financial assistance program until this past February allowing me to rack up over $1k in debt in copays. So I've had to apply for financial assistance with the hospital and their application seems illegally intrusive according to my state's laws. Asking for bank statements and more.

It's been almost 2.5 years since I started Tysabri and the risk for PML seems too high now. Plus my insurance premium and my husband's premium is so high now that we won't be able to afford it next year since it will surely go way up again. As it is, after paying my husband's premium, we can't afford for him to go the doctor and his health is failing. He looks anorexic.

I've been bed bound and housebound now for 2.5 years. We do not qualify for any aid of any kind.

[pennstater]

I am so sorry to hear, but glad to see a post from you. I know it has been a while. I am interested in the source for increased PML risk and false negatives you mention. I have been on Ty 5.5 years and negative still, with tests every 3 months. So I want to understand any risk.

As for assistance, if you tell your neuro you are going off due to expense, can his office help find assistance? Did the drug company say no?

The US Healthcare system leaves alot to be desired. I think our legislatures should lose their coverage and then let them work on reform.

[RockysMom]

Legislators have same plan

I did not know this until the other night but it is true that Congress must choose from plants available through the affordable care act exchanges in Washington DC. I have a plan through the Maryland exchange through the same law.

My neuro is a PA and she does not have anything to do with copay stuff. Biogen did approve me for assistance and even said it would be retroactive for this year. However, the hospital apparently has not received anything yet.

As for the source of the info I mention, just google "Tysabri pml risk" and look for articles from January 2016. I will try to give you more info...look on medscape for article dated January 14, 2016, it also says new cases have shown up despite jcv negative tests. Lots of very alarming info. Now I expect my assistance to be cancelled after posting this but the fact that they are playing fake out with my hospital debt. Meanwhile we barely have enough to eat.

[SharonK]

Hi RockysMom,

ive no practical advice but I just wanted to say I'm so sorry that things are bad for you at the moment and sending lots of good wishes to you x

[RockysMom]

Thank you

Hi RockysMom,

ive no practical advice but I just wanted to say I'm so sorry that things are bad for you at the moment and sending lots of good wishes to you x

Now I don't know if I'll stay on Tysabri or not but thank you Sharon.

[Carolinemf]

Hi Rockysmom,
I know little about the us health system but I wish you all the best and hope things improve.
Caroline

[pennstater]

I did not know this until the other night but it is true that Congress must choose from plants available through the affordable care act exchanges in Washington DC. I have a plan through the Maryland exchange through the same law.

My neuro is a PA and she does not have anything to do with copay stuff. Biogen did approve me for assistance and even said it would be retroactive for this year. However, the hospital apparently has not received anything yet.

As for the source of the info I mention, just google "Tysabri pml risk" and look for articles from January 2016. I will try to give you more info...look on medscape for article dated January 14, 2016, it also says new cases have shown up despite jcv negative tests. Lots of very alarming info. Now I expect my assistance to be cancelled after posting this but the fact that they are playing fake out with my hospital debt. Meanwhile we barely have enough to eat.

I actually am relieved after the article I read. Depending on the length of time on Tysabri, my neuro tests JCV titer every 3-6 months. I am on 3 month schedule. Of the 3 cases referenced, 2 hadn't been tested for 8-9 months. Unfortunately, that leaves one person who was tested 2 weeks before and contracted PML, either false negative test or newly contracted.

For me, Tysabri is still worth the risk. I have faith in my neuro, know if anything suspicious, would get an MRI asap to look at to rule out PML. MS progression scares me more than PML risk.

But it is a very personal risk evaluation for each person.

I hope that if you want to stay on Tysabri, there is some way to make it happen. If not, should you try something else, I hope it is effective.

[JerryD]

I am not in any way going to suggest that I am a medical expert but I have been watching and reading about many patients' experiences on the various DMD's for some years. I was on Tecfidera for 2 years, or more, and my neurologist suggested that I drop Tec and have the 5 day Lemtrada infusion. When I was in the infusion clinic, another patient was also being infused with Lemtrada. He said that he was on Ty, for several years.
He opted to switch to Lemtrada because Ty was not good for him, any longer! I was told that my neurologist was offering to switch several of his patients from Ty to Lemtrada.
I don't know the complications that come with this entire 'infusion situation'. I suggest that you that you discuss this with your doctor . Sorry if this is not to your point. Just my 2 cents and you know what that buys. Good luck

[Tia1]

Hi RockysMom, I don't have any info on the medication used or the risk involved. However, I am glad that you posted and wanted you to know that I will be praying for things to get better for you and your husband.

[palmtree]

Rockysmom,

I sounds like you are giving up. Please don't give up. As Jerry said, there are other options like Lemtrada and now we have Ocrevus.

I know those financial assistance programs are a real pain to fill out and intrusive but to get 100% waiver of your copayment is worth it. I make 20 copies of my tax forms every year because I have to fill out so many forms. You don't have to be indigent to qualify. Most have very realistic views of what it costs to live and they don't want people to get into trouble financially with doctor bills.