Announcement

Collapse
No announcement yet.

Taking the calculated risk

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Taking the calculated risk

    Hi everyone! Had my follow up with my MS specialist this morning. I knew last week my JC came back positive. Titre level 1.6=1/1000 risk. Together, we decided that it was a low risk for the two years and that due to the number of lesions present and active symptoms absent, it would be the best option. I dug around the internet all weekend and read everything I could (even here). I'm fearful naturally but optimistic. Not sure yet when the first infusion will be since there is a lot of pre-authorizations, etc to get done.

    I would love to hear your experiences, how you prepare for the infusions, any tips or tricks please!

    Thank you!

    #2
    I just wanted to let you know that my wife has been taking Tysabri for 14 years consecutively; the only interruption was when it was off market in 2005 and then re-introduced in 2006. For her, MS has largely halted. She has had no flare-ups on Tysabri many previous to taking it.

    Although Tysabri was not approved until 2005, my wife was on the same dose in drug trials, 300mg, which, of course we found out when the trial was unblinded. She has always been JCV positive with all tests varying between 2.5 and 4.1. But that's why she has been on it for so long, she took it in trials which continued through FDA approval.

    I really appreciated what you said, "taking the calculated risk". That is it exactly. Take the risk you can sleep with but make darn sure you are not being stupidly cautious. I know one person who stopped taking Tysabri because of PML concerns and she was JCV-. I don't intend to be mean but for heaven's sake you can't get PML unless you convert to positive, why not wait because you may never convert but if you do and are worried then stop taking the med. It did not turn out well for her. God bless her, I love her. MS can become an extraordinarily horrible disease if not treated effectively.

    There is risk in what you do but don't forget to calculate the risk in what you don't do! If you don't treat MS aggressively that is taking a risk, also. Put value on both sides of the scale... calculate the risk as you put it. Well said!

    As far as side effects... none that we know of or can identify... that is my wife's testimony... everyone is different and some people experience side effects but for my wife there has been none we can identify.

    Best wishes for your highest success!

    Comment


      #3
      Hi wholenewworld "calculated risk" you hit the nail on the head there I'm JC- but when I was going to start on TY I still had plenty of questions and a little nervous I can't imagine what it would be like to be positive, but talking to others that have been through what you are now is a great step, has your neurologist talked about the frequency of your infusions, i read somewhere that if you are positive the infusion freq can be stretched to 6 weeks instead of 4, I have been on Ty for 5 infusions, drink heaps of water the day before it helps find a vein, and don't plan on doing anything the next day or two, I sleep the next day completely buggered and the infusion is easy and pain free other than the jab Craig

      Comment


        #4
        Thank you both for the input!

        Myoak- Wow...14 years? Great for her that she is still able to take it and has no side effects! And yes, you are completely correct that there are many risks in life! To get aggressive treatment with 0.1% chance of PML...to me it's worth it to stay status quo if I can. So sorry to hear your friend stopped taking the Tysabri and things didn't go well for her.

        Thanks for sharing the side effect information. I know everyone is different but from what I have read, the side effects are less than what most other treatments cause.

        dastardly- I will getting the infusions every 28 days. I will have brain MRIs done every six months. Thanks for the tip of drinking water. I do have stubborn veins! You really sleep the entire day the day after? Yikes....now to find out how to sleep and work at the same time! ;-)

        Comment


          #5
          just chiming in on the sleep thing...

          Personally, I haven't found that the tysabri infusion makes me any sleepier the next day. The next day is pretty much a normal day for me. So, I wouldn't be too concerned about that.

          But, everyone is different.
          RRMS Dx: 3/23/15
          (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
          Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

          Comment


            #6
            Also chiming in

            I've had monthly infusions since October 2014 and all in all its gone remarkably well. No real side effects other than mild headaches, so now my nurses give me a saline drip for the entire hour post infusion (Touch requires you to wait an hour after your med drip stops). The extra hydration keeps me from getting headaches now.

            Also, I was cautious at the begin get because I didn't know how it would affect me, so I planned to rest the next day, but after a few infusions I didn't need to. I think I might have need the rest more for the fear and stress with starting something new and having a newly diagnosed disease.

            One time I pushed myself too hard and went hiking the day after and got dizzy, so now I don't do that anymore.

            My tips are to hydrate a lot the day before, and ask for saline drip after the Tysabri part is complete.

            Also, I can be a tough stick sometimes. Through trial and error I've learned which veins are the best, and that my right arm and hand are best (even though that's my dominant side and I would prefer to have it unencumbered. But as easy stick is with keeping your arm relatively straight for an hour.

            Another thing I've learned is to pay attention to which nurses are the best at IVs and ask for them if you can.

            Also, I made the mistake of telling a nurse I had rolling veins and I think it psyched her out and backfired on me. It helped me remember they are human and that predicting a bad result for an IV stick. wouldn't make them feel confident. So now I just tell them which locations work best for me but to use their judgment about which area looks best to them. That new approach has helped a lot. I almost always just get one stick now.

            Comment


              #7
              Yikes. Please excuse all my typos. I'm using my phone here because my laptop suffered a near drowning episode yesterday and is now being refurbished by the hopefully good folks at Apple.

              Anyway. Those sentence that make no sense? That's autocorrect at work. Not brain fog. I promise. <hair flip>

              My kingdom for an edit option!!! 😀

              Comment


                #8
                And I'll add my 2 cents. I will have my 75th infusion on April Fools Day. Hmm, wonder if someone is trying to tell me something!

                When I was first diagnosed at 58 1/2, my neurologist ( a woman I have come to highly respect) sent me home with a ton of information on the DMD's available at the time, and told me to come back in a month with a decision. As a retired school librarian, she knew I would investigate each and every one. She recommended Tysabri even with the PML risk because she knew my age dictated an aggressive approach. After much research, I agreed Ty was for me. I knew quality of life was more important to me than quantity.

                I started 6 weeks after diagnosis and have never looked back. She did put me into a study where they were researching PML and the JC virus. A nurse called and said my results showed I was positive which didn't surprise me at all. After being around little kiddos for 28 years, I wasn't surprised. However, I was stunned when I went to my next appointment and was told I was negative! Go figure. I am tested every six months and am still negative.

                From all of my post reading, I feel safe in saying the vast majority of Tysabri users have no problem at all. I had a slight reaction (5 minutes of a "tight chest" feeling) at infusion 4 and 5 but nothing since. Day 1 is just like day 28. I absolutely love the nurses are my infusion clinic.

                The "stick" is important, and if you have a good vein, then that is the one you should use. I had a couple awful ones at a hospital infusion center (which is why I found another center). I now believe "my money, my stick, my choice!" They are free to express their opinion, but I am free to ignore it, and I do!

                Best of luck!

                Comment


                  #9
                  I started Tysabri 10/2006 and have been grateful ever since. No side effects, slight headache a few times. Better MRIs, a couple sx abated and progression halted YEA!

                  I am hydrated and I drink a cup of coffee, finding it helps the vein behave. I do have deep and rolling veins and I do tell the nurse infusing me. I bring something to keep me busy (I read) and when I was there for 2 hours-one for infusion and one to wait after infusion, I brought something to eat.

                  I now get infused every 56 days because there have been no pml cases going 8 weeks after being on Tysabri longer than 2 years.

                  Best wishes
                  Linda

                  Comment


                    #10
                    Good luck. You have some good advice. On hydration, it is not just the day before, but multiple days ahead. That will help both with finding the veins, but also headaches.

                    In the beginning, I didn't feel much. Now, I am sleepy after and dragging the next day, but then it is like a switch goes on, and back to normal.

                    You may also read about people "jonesing" for their next Infusion. I am also one of them. It started out a few days before next Infusion, feel a little tired, not as clear headed. Now, it is about a week ahead.

                    I have been on it almost 4 years. It is a calculated risk, some more so than others due to titer. I wish I had been on it longer, but neuro was conservative and insurance would not cover until two other meds had failed. Glad that it can be first line medication now!

                    My MRIs remain stable, with one lesion shrinking some (it had remained same size for 7years prior). It seems to have halted disease progression for me.

                    I wish you well. Let us know when you start.
                    Kathy
                    DX 01/06, currently on Tysabri

                    Comment


                      #11
                      I just had my third infusion today. All is well, though they poked me pretty good today (first time they've had trouble finding a vein). Echo the hydration advice. Drink plenty of water, avoid coffee, keep your arms warm.

                      My first infusion I felt pressure in my head during the infusion and I was very tired that night. Now the pressure is much milder and I'm also not as tired, though I am still a bit more tired than normal on the evening of the infusion (and right now I'm feeling especially tired but I think that's mostly from the stress of trying to find a vein). In general it's not bad, and I usually just work on my laptop during the infusion now.


                      Good luck.

                      Comment


                        #12
                        Thank you SO MUCH to EVERYONE who responded! I appreciate your input more than you will ever know! Today is the big day. In 3 hours to be exact. Either I didn't read the pamphlet good enough or it's my MS memory...but I was unaware of feeling chest tightness and vaguely remember a mention of headaches. I'm sure if I re-read all the posts I already read, that information would be there. But, for right now, I have them in my mind so I don't panic.

                        I'm not much of a worrier about needle sticks, vein issues, etc. I worked in Microbiology at the hospital and would have to cover the phlebotomists on the weekends (and yes, getting psyched out by a possible bad stick beforehand due to patient warning is a "thing"!). Also, I have had many surgeries over the years. Thankfully, I am a one coffee a morning gal and then it's water until my allotted "Coke Zero" at night.

                        Ok, I'm rambling now, sorry. I am so very nervous about today while at the same time optimistic and glad I feel like I am finally doing something proactive for this horrible disease.

                        On a side note, my MS doctor told me I would be getting Ibuprofen and Benadryl before the infusion. Is that a one time deal in case of allergy/side effects or is it standard protocol for some? I'm curious because I take Benadryl nightly for allergies and I know if it's going in intravenously I am going to be asleep by the time the infusion starts!

                        I'm so grateful to have found this website. The feedback and encouragement from all the wonderful people here is priceless!

                        Comment


                          #13
                          The Ibuprofen and Benadryl (Claritin for me) protocol is pretty standard for the first few infusions, "just in case." I did both for maybe 6 infusions but then tried the infusion without and did just fine. Now I just go in and have the infusion. Just monitor your body and if you're concerned about anything, let your infusion nurse know. I had a couple of the "chest tightenings" on two infusions that lasted for 10 minutes. Now nothing. Tyasabri has been really good to me; I hope it is the same for you. I was so worried for my first, and then when I realized nothing untoward happened, it was such an anticlimatic feeling. Tomorrow will be another JC Virus test for me; I've had so many I've lost count! Hopefully still negative. Lay back, relax, and enjoy!

                          Comment

                          Working...
                          X