Living with Multiple Sclerosis - Drug Holiday.mpg

[Richie979]

Ive had MS for 3 years I have been testing being off all MS altering drugs for about 2 week's now and my life has vastly improved? Well worth looking into!!! And yes I agree, you are cute? (CRACK!).....the wife???? Ha-ha. Love richie979

[laurenvparrott]

@Richie979 Aww, you are so cute :)

[Richie979]

Ive had MS for 3 years I have been teating being off all MS altering drugs for about 2 week's now and my life has vastly improved? Well worth looking into!!! And yes I agree, you are cute? (CRACK!).....the wife???? Haha. Love richie979

[laurenvparrott]

@Richie979 I'm so glad your life has improved!!

[PERUANO31]

shifting from the subject just a tad bit...

you are sooo freaking cute :)

jeje

[laurenvparrott]

@PERUANO31 Aww, thank you so much!

[terryzarnik]

Hi Lauren, Go Spartans! I myself am an Indiana Univ. Hoosier class of 1970. GO BIG TEN! I saw this video and have never heard of PML. What is PML? My wife of 42 years today has had MS for over 20 years. She takes Copaxone and has had a deterioration of muscle tissue at the injection sites since she started taking Copaxone . I was told to never mix the drugs for safety sake. I do have other questions for you but on a more personal nature. email address is: thetzbzzoo at embarqmail dot com

[laurenvparrott]

@terryzarnik Hey! I sent you an email!

[ADAIERS]

I got shingles after my 3rd dose of tysabri, my neurologist then made me not take the drug for 2 months and i start again next month.

I dont mind breaks on tysabri, but has to make sense why you would stop taking it for awhile like in my case shingles and my age group/chances of getting it = rare

[laurenvparrott]

@ADAIERS Yes, everyone is different and there needs to be a valid reason for taking a drug holiday. I hope you are doing well!

[drewfuss2121]

I am taking a drug holiday from my rebif this week. I'm going to my neurologist 3/24 and I'll ask her about it.

[laurenvparrott]

@drewfuss2121 That's the best thing to do...talk to your doctor. Good luck!

[MrNormanwyne]

Lauren, Where were most of the drug holliday suggestions coming from. What countries?

Norman FL

[laurenvparrott]

Hey Norman! I heard from lots of different countries - I think it's a universal recommendation for people but I don't want to have one.

[crillelundh]

From what ive understood from my doctor its really not recommended with tysabri. As i understand it if i were to stop my tysabri treatment i wont be aloud any other MS-drugs for the first 6month, even if i were to take a 1-2month break i would have to wait another 6month before starting tysabri again. Dont know if thats specific to Sweden perhaps or even just my hospital.

Best wishes from sweden

[laurenvparrott]

Hello! Yes I've heard similar information from different countries, and as far as I'm concerned I don't want to take a drug holiday!

I hope you're feeling well!

Lauren :)

[Rosanna28]

Hi Lauren !

first of all, i´d like to say " thank you " for doing those videos on youtube.

Most of "us" already had those annoying "drug holidays" hehe I have been living with MS for 11 years now and iwas having problems to walk .

Great to watch your videos !

[laurenvparrott]

Thank you so much for your comment! I hope you are feeling well!

[drewfuss2121]

Lauren - I went on tysabri for about six months during 2008... my white blood cell count started skyrocketing, and I was hospitalized for viral meningitis. that was really not a fun stay at all. Then my neuro put me back on rebif 3x week shots, and even though my balance is cruddy, and my vision drives me nuts whenever I go outside... have almost had some bad falls. really bad. color blindness. etc. I thought I had progressive multifocal leukoencephalopathy w/the tysabri, but I survivedLOL

[laurenvparrott]

I am so glad you're doing well now and it's not PML!

[sandywatts500]

Hi Lauren. I also WILL NOT take a drug holiday from Tysabri. I've only been on it for 7 months now and I'm doing quite well.

When I was on REBIF, after 9 years I did take a drug holiday, but I had built up NABS and had to stop anyway.

Thanks for the video.

Sandy (Tysabri newbie)

[laurenvparrott]

Hi Sandy! Thank you for writing! I'm glad you're doing well on Tysabri!

[7minibike2]

hi lauren thanks for all the vids makes me smile alot.I have been on copaxone 7yrs and forget some how to do the shot some time once a week never had a problem till i got end less stress then all hell broke lose.they say with copaxone it stays in the body for some time.maybe that will help alittle thanks mike

[alyms79]

that is basicly what Ive done. I havent been on copaxone for over 2 years.

And if I hadnt gone through this stress last summer,I would be doing fine. But I am still doing awesome considering!!

[laurenvparrott]

That's wonderful!!

[tonywilde1234]

HIya Lauren, from my clinical experience a drug holiday is only ever worthwhile if there is a good reason to pause the treatment, I have seen many examples of people "having a break" without a good reason and it leading to new issues that are very difficult to deal with. Another nice and informative video sweetie.

Stay well, love Tony :) xxx

[laurenvparrott]

Hi Tony! Thank you so much for that information!! I hope everyone see this! I hope you're doing well!!

Love, Lauren :)

[CraigSparham]

i brought up tysabri to my doctor and had to spell it out he said bring it up when i see my neurollogist that i see later. luv the uk videos.

[laurenvparrott]

Yes I would definitely talk about Tysabri with your neurologist. It was great hearing from you!

[markolad]

Thanks Lauren you put my mind at ease I was having my tysabri infusion on Thursday past and the nurse was saying to me about a holiday from my Tysabri but I told them i'd be really scared to do that cause i've had my 18th infusion i've had no relapses and its giving me my life back i've never felt better or fitter and there is no way i'd want to mess with that.

Thanks Lauren and yet again i've found your posts really useful.

All the best and take care

Mark x

[laurenvparrott]

Thank you Mark!! I am so glad you found this video useful!! I wish you the best!!

xoxo

Lauren :)

[eliza8778]

Thank you, Lauren! Your experience makes me more confident. I'm waiting to Tysabri to come to me in the next few weeks ( I hope)! I'll keep you informed...I'm thinging about the methods! :)

[Lucretia1419]

Some people were lucky not to have been given Tysabri, as in the time they were waiting for this poisonous drug they happened to discover LDN and starting it changed their life. Google LDN! No side effects, no danger of PML, over 70% reduction of relapses and progression. It's stopped my MS in its tracks and it's even improved symptoms. I've won a lottery I thought I had lost, when I was diagnosed. Check it out for yourself.

[eliza8778]

Thank you, Lauren! Your experience makes me more confident. I'm waiting to Tysabri to come to me in the next few weeks ( I hope)! I'll keep you informed...I'm thinging about the methods! :)

[laurenvparrott]

That's wonderful! I'm so happy for you! Yes, please keep me informed!

[WithCourage2008]

Hi Lauren! It's Anna again! I'm glad your doing great!

Nice video! I did wanted to mention a concern I have for you. You have been on Tysabri for over two years already. Most of the PML cases were people on it for over two years. The JC virus (what causes PML) can only be activated when the immune system is very weak. By taking a Tysabri holiday, you would be giving your immune system a chance to regain its strength. I am not a doctor, however. I just hope you give all this a lot of thought!!

[laurenvparrott]

Hey Anna! Thank you so much for your concern! I am looking into everything right now - I'm researching the JC virus and I'm talking to my neurologist about what will be the best thing for me.

I happen to personally know people who have had 70 Tysabri infusions and are feeling better than ever, so I just have to take it one day at a time!!

I hope you are well!!

Lauren :)

[WithCourage2008]

I am glad to hear that, Lauren! Take care!

[tazscott14]

How did we come to this? How did America come to believe that we need to always take drugs? I don't remember people always needing drugs years ago. I know people that have lived well into their 80's without taking so many medications. They did it by eating right and always being active. What has happened?

I have been on the same drug (Avonex) and I can't wait until the day that I can take a life long vacation from it! Please talk about the new discoveries! CCSVI and the Liberation Procedure!

[laurenvparrott]

I know what you mean. I think life has changed so much and there is more stress and more environmental factors that play into current diseases that didn't exist years ago. I made a video about CCSVI and it's so exciting! Until I know for sure that it works and people are getting the surgery done everywhere, I'll remain on Tysabri because I feel great!

[tazscott14]

Hi Lauren,

There might be more stress, but what about all the safeguards and regulations that were put in place. Things were made safer for people from the schools all the way through life up to retirement. At least that is what I was taught to believe. We never know what is real anymore. I don't know who to believe. Just as they say about peoples health improvement after the Liberation Procedure, Is it that the drugs also give us a placebo effect? I don't think anyone knows for sure.

[medad1]

I've got my 11th infusion of Tysabri this morning Lauren can I have a "Holiday" of it !!!

ha ha ha >>> Just joking :)

Next week I'll see my Neurologist for re-evaluation for next 12 infusions

Regard

Mody :)

[laurenvparrott]

Hi Mody!! Hahah...you're funny :) Please let me know how your appointment goes with your neurologist!

xoxo

Lauren

[andie221]

I have read about what Mark has said about the risk of developing an allergy. or a brain infection or whatever.

The bottom line is - we do not know!

To be quite honest if it was working, I wasn't going backwards or having relapses and it was well tolerated - well why WOULD you have a drug holiday?

Why risk that? I'd stick with it until something better came along.

[laurenvparrott]

I feel exactly the same way!!

[irishbear76]

Lauren,

I have read that with Tysabri that the experts recommend NOT taking a holiday because of the risk of developing an allergy to the medication.

I do not know what to think about that.

I am on a holiday from Rebif and I am doing GREAT!!!!

I think once my body started making antibodies that I got all the good from Rebif I am going to get (that is me trying to tell my body that all is well LOL :)

Good video, with good subject matter.

take care.

Mark

[laurenvparrott]

Hi Mark! I don't know what to think about developing an allergy to Tysabri either - I've never heard that.

I'm so glad you're doing so well!! That's awesome Mark! I wish you the best! Please keep me posted on everything!

xoxo,

Lauren :)

[vbeachy]

Hi Lauren;

I don't plan on taking a drug holiday from my Tysabri treatment.

Even with CCSVI research moving forward, I don't anticipate stopping Tysabri unless something better (a cure?) comes along.

I am NOT worried that the longer I am on Tysabri the greater the chances for getting something like PML. I feel my chances of winning the lottery are MUCH better than my chance of ever getting PML.

[laurenvparrott]

Hey Vern! I feel the same way that you do - I don't plan on taking anything other than Tysabri unless CCSVI, or another cure, is proven to work on many people!

I'm not worried about PML at all...I agree with you about the lottery stats!

[wendell3308]

Good to hear you're doing well on Tysabri.

Good to hear you actually state the word- Tysabri.

Wish you could put it in your youtube title,

but understand FDA lawyers may not permit you to do so.

Same reason?- you don't mention Dr. Papayannopoulos's research showing natalizumab helped "mobilize stem cells", also restricted to just testing after 1 infusion.

[laurenvparrott]

Thank you for your message! I would love to learn more about how Tysabri helped "mobilze stem cells"! When I have the best information I'll make a video!

[andie221]

Why is that, the FDA , there are heaps of vids on Tysabri with that word as part of their title. Isn't that censorship? I thought YouTube was free of censorship to a certain extent or within reason. Isn't it?

You wouldn't be legally liable would you?

[ChucknMcNuggets]

If you feel better on Tysabri then you have to do the Tysabri thing. If it's not broken don't try to fix it. But if other people are on Avonex, Rebif or Betaseron injections, they can easily stop taking it for a month to see what happens. Obviously don't stop taking it during a stressful time or the heat of summer... Just don't be afraid to stop. I was originally going to stop for a month, but I felt so much better I never went back.

Thanks posting these vids!

[laurenvparrott]

Yeah, Copaxone and Beta Seron didn't work for me which is why I stopped taking them - so that's why I'm on Tysabri and you're right, if it aint' broke don't fix it.

[angelusa73]

Dear Lauren,

I am not sure how my future will be but I don't plan to take Tysabri for a super long time and I hope that CCSVI will give me a better choice of treatment and possibly a cure. I am very hopeful about the new discovery that was made by the Italian doctor and I hope that I won't have to take strong drugs for the rest of my life...but then again, we don't know how things will be in the future and I continue to take a day at the time...

Have a good Sunday!

It's good to see you! :)

[laurenvparrott]

Hi Angela!! I agree, I hope CCSVI works and there is a cure soon! But I agree, we just need to take it one day at a time!

Baci!

Lauren :)

[ChucknMcNuggets]

The fact that your immune system is controlled by your mind subconciously is all I need to know. They are quick to put us on life altering drugs with horrible long term side effects because those companies make a ton of money. Ask any med student today to compare what they are taught to a med student 30 years ago and it will be staggering. Everything leads to writing a script now... Thats what they are being taught. I agree you shouldn't stop taking Tysabri if it seems to work for you though

[laurenvparrott]

I know what you mean and that scares me. Yeah, I'll keep taking Tysabri because it's working!

[MSVlogSupport]

Very good topic Lauren, I know for the drug I am on, Avonex, They offered me to take a drug holiday because of the horrible side effects I am having.

They then said once I started back on it I would probabaly be back at square one so like just starting over.

I chose not to take the drug Holiday, didn't make sense to me.

Best to you,

Andrea

[laurenvparrott]

Hey Andrea!! Yes, going back to sqare one really scares me and I don't want to stop taking Tysabri. It sounds like you're doing well on Avonex and that's great! I know the side effects are bad, but if it's stopping progression it's worth it in my opinion.

[ChucknMcNuggets]

I saw one of the leading neurologists in the state of MI. He put me on Betaseron. It made me feel awful for a year, I gained weight, and felt terrible. I went on a permanent drug holiday, beefed up my immune system with natural things, and my Dr. can't explain it that I haven't had a symptom in 3 years. I work a stressful job in the heat and it's hard work. Still no symptoms. Stopping your meds for a bit is the only way to find out if they are doing anything, or if its really in your mind.

[laurenvparrott]

Wow, I'm so happy for you! I stopped Beta Seron for a while and my MS got worse - that's why I went on Tysabri and I'm doing so well, I don't want to stop!

[qualisarx]

Good for you!

[laurenvparrott]

Thank you!