carola 02/04/18
Last reply 2 weeks ago
Days between Tysabri treatments

I was wondering how many days could be in between treatments. I know 28 days is what it should be, however I have a family visit planned. (planned it before I started Tysabri) I figured out if I go 31 days, 31 days, 29 days, 31 days it will work for me. The people that are giving the infusions were not happy about it at all and said it was my responsibility and I should cancel my visit. I really don’t want to as my mom has breast cancer and this would be the first time I will see her after her breast cancer and my ms diagnosis. Also, I didn’t talk about it with my neurologist or ms nurse because I’m afraid I wouldn’t like the answer. What to do?

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stumbler
3 weeks ago

Hi @carola and welcome.

This post might give you some optimism to call your MS Nurse:-

https://shift.ms/forums/topic/frequency-of-tysabri-infusion

Also, I seem to recall a New Zealand member, who was on a 5 week infusion cycle!


lisacal
3 weeks ago

So, I’m sorry the infusion center made you feel like they did. I have been in tysabri about 13 yrs? Since it fist came out. I am as of recent on a 6 week schedule as it stays in your system for 3 months. Some ppl the week before they are due report being able to tell it’s time for tysabri. My experience is that being 4 days or so late for your treatment is not going to make a difference Plz don’t hesitate to ask your dr as all Drs are different. I live in an area where I have been fortunate to have great medical Drs so that is where my advice has come from
Good luck. Ask your Dr. and take care of your mom and yourself
Lisa


carola
3 weeks ago

Thank you for the quick reply! I’m for sure less stressed and I will discuss it with my neurologist and ms nurse.


brando
3 weeks ago

Hi Carola,

I have been on tysabri for quite some time as well, if you are moving a few days off four weeks exatcly it shouldn’t affect you in anyway. Although I don’t do it often I have gone around 6 weeks without tysabri and as lisacal said i also know a few people on 6 weeks instead of 4 where o get my treatment. According to my neurologist the drug stays in your body beyond 6 weeks as well.

if your nurses are that rude and not accommodating then that is just not acceptable behaviour for any kind healthcare practice.

hope this helps

Brando


wjgregg
2 weeks ago

Dear Carola,

I have recently had my seventh infusion. I am generally on a 28 day cycle, but I’m having a couple of 35 day cycles for precisely the same reason as you. I have holidays booked, which clash with the 28 days. The unit at the Leeds general Infirmary were absolutely fine about it.

Remember, stress is incredibly bad for MS, so if you go to see your mother and get your stress levels down then you are onto a winner! Change the cycle, and take your visit, say I. Give your mother my best wishes!

Good luck to both of you,

Jon

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