I've tried all of the CRAB drugs and none of them work...My MS is very aggressive right now. I'm having relapses back to back and I'm in a really bad relapse now. My MS specialist seems to think the next relapse very well could put me in a wheelchair. I'm having a lot of difficulty walking now, a lot of numbness, and I'm just exhausted all of the time. He's wanting to hesitantly prescribe me Ty but only until BG-12 comes out. This is because I'm JC positive and I've had prior immunosuppresant use. I'm definitely at a higher risk to get PML. I'm only 26 and I have a 4 month old baby. PML is the last thing I want to happen. If anyone would give me their opinion on whether or not I should start TY to get my MS under control I would really appreciate it. Would I be able to tell a difference after the first few infusions? I know everyone is different, but generally speaking...Any opinions or experience on how Ty helped you during the first 6 months or so would be great!
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TOUGH POSITION..... I'M SORRY...
HHOBBS,
YOU ARE IN A DIFFICULT POSITION TRYING TO MAKE A MAJOR DECISION ABOUT THIS MEDICATION CHOICE. I HAVE TAKEN ALL THE CRAB DRUGS ALSO. I HAVE BEEN ON TY FOR 35 INFUSIONS AND CURRENTLY GOING TO TRANSITION OFF BECAUSE I AM POSITIVE FOR THE JCV ANTIBODIES.
I READ A LOT OF INFORMATION AND CHECKED ALL RESOURCES PRIOR TO STARTING TY MYSELF. I WAS FIRST PRESCRIBED THE WEEK IT WAS PULLED OF THE MARKET. LATER WHEN I WAS IN A PERIOD OF PROGRESSION MY NEURO WANTED TO VIST THIS ISSUE AGAIN. I AGREED KNOWING THE RISK I WAS TAKING AT THAT TIME 35 MONTHS AGO.
I WILL SAY THAT I UNDERSTAND THE DIFFICULTY IN HAVING TO MAKE A DECISION. YOUR DECISION IS HARDER THAN MINE FOR SURE BECAUSE YOU ARE AT A HIGHER RISK GOING IN KNOWING YOU ARE + FOR THE ANTIBODIES. I WILL SAY THAT WHEN I FIRST STARTED TY I REALLY COULD NOT TELL MUCH DIFFERENCE THAN PRIOR TO STARTING TY. I GUESS SINCE I WAS NOT WORSENING THAT WAS THE KEY THE MED WAS DOING WHAT IT WAS SUPPOSED TO SLOW DOWN PROGRESSION. I NOTICED A DIFFERENCE AFTER ABOUT 6 TO 9 MONTHS AND MY WALKING HAD IMPROVED. I DID FEEL BETTER NOT HAVING THE FLU SYMPTOMS FROM THE INTERFERONS.
I HAVE ENJOYED GOING TO THE HOSPITAL AND HAVING THE INFUSION AND BEING DONE FOR THE MONTH. I HAVE HAD TO TAKE SOME STEROIDS SEVERAL TIMES DURING THE PAST 3 YEARS DURING MY TY TREATMENTS AND WOUL HAVE TO DELAY A TX UNTIL ENOUGH TIME HAS PASSED TO BE SAFE.
I HAVE HAD A GOOD 3 YRS NEXT INFUSION NEXT MONTH WITH MY TY COURSE OF TREATMENT BUT IT HAS WORRIED MY FAMILY AND THEY ARE PUSHING ME TO STOP ESPECIALLY WITH THE NEW RISK FACTORS. I HAVE 2 OUT OF 3.
I WISH I COULD SAY SOMETHING TO HELP, BUT YOU HAVE TO MAKE THE FINAL DECISION. I WAS ABLE TO TAKE MORE OF A RISK BEING OLDER AND MY CHILDREN ARE GROWN AND MY RISK WAS AS HIGH. IT WAS A RISK AT THE TIME I WAS WILLING TO TAKE BUT NOW I AM COMING OFF TY AFTER MY NEXT INFUSION.
I WILL ASK HAVE YOU EVER TRIED IVIG? YOU DID NOT MENTION THAT IN YOUR LIST OF MEDICATIONS YOU HAVE TRIED. I WILL SAY THAT I TOOK IVIG FOR ABOUT 4 MONTHS PULSED BACK TO BACK AND WHEN I WAS AT MY WORST POINT THIS WAS LIKE LIQUID GOLD FOR ME. I WAS VERY LUCKY AND HAD NO SIDE EFFECTS ONLY GREAT RESULTS. THE BIGGIST DRAW BACK IS THE COST IN MY OPINION BUT THIS IS JUST MY OPINION.
I WILL KEEP YOU IN MY THOUGHTS AND PRAYERS AS YOU FACE THIS DIFFICULT DECISION....
TAKE CARE HOBBS AND BEST WISHES WITH YOUR DECISION.
Originally posted by hhobbs View Post -
I would do what your Dr. said.I'm waiting on my test for the virus, but hope to start Ty. soon.
SaraComment
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Thanks for the response. I have taken IVIG and I tolerate it very well, but it does absolutely nothing for my MS. I get it once/month and just last week, I did a 5 day course of it to flood my system with it but I haven't seen a difference in my symptoms at all. I'm just hoping and praying to get better. I do not want the way I am now to be my new baseline and I surely don't want to get worse.Comment
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FEW OPTIONS
HOBBS,
I AM VERY SORRY TO HEAR THAT YOU HAVE TRIED IVIG AND YOU HAVE NOT HAD A RESPONSE TO SLOW DOWN THE PROGRESSION. IT WAS MY HOPES THAT YOU HAD NOT TRIED THE IVIG, AND WHEN I READ YOU’RE POST DEBATING TO RESPOND OR NOT I WAS TORN ABOUT THAT DECISION.
HOPEFULLY THE IVIG WILL “KICK IN AND HELP” VERY SOON, AND I AM NOT SURE HOW MANY INFUSIONS AND OR IF YOU HAD TRIED IVIG IN THE PAST. I DO REALIZE THAT NOT ALL MEDICATIONS ARE CORRECT FOR EVERYONE IT WAS JUST A SUGGESTION. I WOULD FOLLOW MY NEUROLOGIST SUGGESTIONS IF I HAD EXHAUSTED ALL OPTIONS.
HAVE YOU THOUGHT ABOUT GETTING A SECOND OPINION PRIOR TO STARTING THE TYSABRI? IF YOU HAVE A SECOND OPINION THIS MIGHT MAKE YOU DECISION SOMEWHAT EASIER KNOWING THAT TWO SPECIALISTS ARE ON THE SAME PAGE ABOUT YOUR OPTIONS. I HAVE ALWAYS BEEN A HUGE SUPPORTER OF SECOND OPINIONS I GUESS ESPECIALLY WITH MY NURSING HISTORY OF MANY YEARS, AND PRIOR TO STARTING ANY MEDS AT FIRST DX I WENT FOR A SECOND OPINION AND I ALSO WENT FOR A SECOND OPINION PRIOR TO STARTING TY BECAUSE THIS IS A HUGE DECISION TO MAKE.
IT IS MY HOPES THAT THE IVIG WILL HELP YOU VERY SOON AND YOU WILL NOT HAVE TO MAKE THIS DECISION AT ALL. IT SOUNDS LIKE YOUR DOC IS GREAT AND ON TOP OF EVERYTHING AND REALLY TRYING TO LOOK OUT FOR YOU AND HAS SUGGESTED TY BECAUSE THAT MIGHT BE THE BEST OPTION FOR YOU AT THIS POINT. THAT IS HOW I FACED THIS DECISION OF GIVING TY A TRY KNOWING THAT MY NEURO WAS LOOKING OUT FOR MY BEST INTEREST AND KNEW THAT I HAD EXHAUSTED ALL OPTIONS AND I WANTED TO BE AGRESSIVE WITH MY TX OPTIONS TO SLOW DOWN PROGRESSION.
I WILL SAY THAT THE SCREENING TOOLS USED NOW WITH THE TOUCH PROGRAM, AND YOUR HIGHER RISK STATUS YOUR NEURO WILL BE MONITORING YOU CLOSER DURING THE UP COMING MONTHS UNTIL BG 12 IS RELEASED.
I HAVE MY NEXT TY INFUSION IN JUNE AND I AM THINKING OF MAKING THAT MY LAST BUT MY HUSBAND IS VERY CONCERNED ABOUT ME COMING OFF OF TY AND NOT TAKING ANYTHING UNTIL BG 12 IS OUT IN FALL / WINTER. I HAVE KNOWN SINCE APRIL THAT MY NEURO WANTS ME TO TRANSITION OFF BUT I HAVE TAKEN 2 INFUSIONS SINCE AND HAVE MY 3 ONE SCHEDULED. I REALLY DON’T WANT TO GO BACK TO ONE OF THE CRABS EITHER THAT IS JUST NOT AN OPTION FOR ME AND I TOLD MY HUSBAND THIS AND FOR ME A FEW MORE TY INFUSIONS WAS MY OPTION FOR NOW. THE RISK I AM WILLING TO TAKE FOR A SHORT PERIOD.
WAITING ON BG-12Comment
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hhobbs -
The new numbers for PML have just been posted and it is now 250 worldwide. For those people, all the stats in the world mean nothing to them.
I have had 37 infusions. For me, Tysabri has been like a magic drug. I do not know if I am JCV + or -. I will not be tested because my insurance will not pay for anyone who is positive. I have only been Copaxone - for 5 years.
There have been no cases of PML in the first year of use. But whose to say they didn't start getting it in the first year and it didn't show up for a few months? But, I do think they are still saying it is safe in the first year.
It has been said to go by what your doctor says. That is not always the best path to take. But, it depends on the relationship you have with your doctor. Do the research yourself. You have more time and more invested in this than your doctor does. The Rocky Mountain MS Center is a good sourse of information as is the NMSS. Just type in what your are looking for in the top right side of the home page.
Tysabri started working for me at about 4 months, by 6 my doctors were amazed. I am amazed. Not everyone has had a great response.
You age has to be a factor too. And of course your child's age. Congratulations by the way.
Please let us know how it is going for you.Comment
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Hi HHobbs, to answer your question, I started seeing results somewhere around 4 months. I had better balance, less fatigue and more stamina. At 7 months I had my first MRI after being on Tysabri-no active or new lesions!! I have been on Ty for over 5 1/2 years with good results but, I had not used an immunosuppressant and now know I am jcv-
From what I understand (read/heard) a Tysabri user is pretty safe from pml for up to 2 years-at least 1/1000 odds.Linda
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Thank you all for your replies. To answer your question, I have been on IVIG monthly for 4 months (ever since my daughter was born) Maybe the pulse dose of 5 days straight that I had last week will kick in and help me feel better...not sure. I know that I need to get this under control.
Tysabri may be my only option at this point and I will definitely only be taking it until BG 12 comes b/c of my high risk factors. As far as 2nd opinions go, I've had 2 other Dr's recommend Ty..it definitely seems like that's the way I need to go.
It's just scary. I need to get better, but I don't want to end up worse because of a decision that I made. That's my struggle. I just want to be able to run and play with my daughter when she gets older and I've got to do whatever it takes to make that happen.Comment
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here is a thought,
right now i am on rituxan(sp?) it is fairly new to MS but has been around for a while for some cancers, RA, and i believe lupus.
it is a low level chemo, but i have a much better response to it than other low level chemos.
no side effects, except for maybe some fatigue that lasts a few days, i am much much better off than when i started it two years ago (i was wheelchair bound except for around the house) and i get it only 4 times a year (of course its a 5 hour IV)
just a thought if u decide against ty.
and btw, I have been on all of the crabs minus beta, ty (allergic), neuvantrone and a experimental.Learn from yesterday
Live for today
Hope for tomorrowComment
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I haven't researched Rituxan. I definitely need to look that up. I know you said you were wheelchair bound unless you were just around the house. How far has Rituxan brought you? Could you tell a difference and how long did it take before you could tell a difference?Comment
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Tysabri newbie
Hi there,
Just getting started with Tysabri, but so far so good.
One thing I don't mind is taking the shots every other day for the past seven years
It seemed that before starting Ty, I was having persistent problems with spasticity and walking. They were getting worse fairly quickly, so my neuro wanted to put on the brakes. I didn't disagree with that.
I do sometimes think about what might happen when I stop taking Tysabri, such as what are the long term effects. Where do I go from here, etc.
For now, a step at a time.
Best wishes and feel free to write me.
Believe your own truth. Dx 2004. Currently Tecfidera and Ampyra.
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Ty
This is a few days old, but my dr wanted to start me on Ty, so I went to the big guy in Houston to get a 2nd opinion and he agreed its my only option. I was diagnosed in October 2011 and have had a relapse every 1.5 mths with 4 rounds of iv steroids and 1 round of oral and usually still just as bad after. I'm already getting a chair (have a loaner until it comes in) and copaxone and Betaseron have only made me worse. I'm scared I'm gonna end up a vegetable.RRMS 10/2011 Sick and tired of being sick and tired!Comment
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I just had my 4th infusion of Tysabri and I've been feeling more energetic and walking better since about the 2nd infusion (although I never feel great the day after the infusion). Every month I've been seeing increased energy and don't feel the "empty" feeling nearly as often now.
I have three small children myself and I saw my own thoughts echoed in some of your post, particularly that you would do everything you could to stay functional for your children.
Good luck on making a choice, it is never easy but this has been my most effective treatment to date (Copaxone and Avonex didn't slow my relapses down at all ).Comment
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My experience with TY
Congratulations
I started Tysabri when I was 25, I'm 27 now. My disease was very aggressive too. I was getting 2-3 new lesions a month and Optic Neuritis back to back to back with added spinal relapses.
Tysabri started working within the first 3 months and I've not had a new brain lesion since. It has been 28 months. I've had 2 very small c-spine lesions, but nothing major.
I hope it works miracles for you as it did me!
:-)Comment
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tysabri
I to have had miracles with Tysabri 28 infusions so far , and i'm jc-:thumbs_upComment
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