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The other site will not let us postattachments anymore, so I have resorted to written descriptions of my Tysabri performance. I hope that you and Chris are doing well. -Vic |
My 1st tysabri infusion on Tuesday
Ok, I'll tell the truth. I almost backed out; I have no idea why but I just got in a big panic this morning. I called the center and cancelled. I was crying and just a total mess. A few min later the nice lady who gives the infusions called. We talked for a while and the panic went away. I guess I just needed to vent. On to the infusion.
My appointment was resechuled to 2pm. I took 2 benadryl and 2 tylenol at 1:30 before I went in. I went in at 1:45 and got called back at 1:50. They got it on the 1st stick but it kept hurting so they tried another spot. Yep, a rolling vein. We decided not to dig and went to a 3rd spot. Great all was well. The sticks are nothing compaired to MS, so no problem. The tysabri infusion took 1 hour and then they gave saline. It took 1 hour. I was in and out in exactly 2 hours. I really had no problems at all. I did get a tiny headache so I'm glad I took the tylenol. I was a tiny bit sleepy afterwards, but nothing big. We went out to eat then I can home and slept for 4 hours. I don't think I'll panic next time and I'm so happy I'm on this drug! It's now been 12 hours since the infusion so I'm fine. Oh, I heard some great news while getting the infusion. They have a man who was in a wheelchair that now can walk with a walker all due to tysabri! The good news about this Ty just keeps coming! I love this drug! |
Long overdue update!
Long lost update
I had my second infusion on March 6th. This time I had to go to the infusion center at the hospital. I seem to be in the 5% of people, who have adverse reactions, but I saw my Neuro today and he wants me to stay on the Tysabri. He said that sometimes it’s takes 6 months to see results and last time I was on, (which seems like forever) I read all your great posts. I’m still hoping! I have just felt really bad, fatigue is killing me. The headache wasn’t as bad the second time. They gave me 25mg of Benedryl thru the IV and started the infusion 10 minutes later. Sure enough, I start coughing and itching so badly they said they were going to put a seat belt on me. So they stop and call my doctor and he said 25mg more of Benedryl. He told them to keep me there and let me sleep it off. LOL, I must have been wired up, I just couldn’t fall asleep although my eyes felt like they had weights on them. I really hope my body gets used to the Tysabri. He put me on Zanaflex today, increased my Dexedrine and Lorcet. Every time I ask him a question or anything, he says oh you’re just progressing or gives me another pill. Sometimes I really feel I need to check out another Neuro. I’m almost scared to say anything. I’ve not been on the site in quite a while. Does anyone feel if they stay away from “MS Stuff”, that MS will go away! Go ahead feel free to tell me I’m nuts. Or maybe not think about it all the time. I still have very high hopes for Tysabri. I am so thankful this isn’t weekly like Avonex!!! My skin would fall off from scratching!! I hope everyone is doing great and look forward to reading all the updates. I saw the trouble someone was having with MSActiveSource, or TOUCH. I called them right after my first infusion with a question. Never heard a word back, then I get a letter from them Saturday, welcoming me to the program?!?!?!? :confused:And the Avonex people called me the other day checking on me. I used to complain about them calling me constantly when on Avonex, I will never complain again! Sorry sooooo long! |
Congrats Sheena
Hi Sheena- I'm so proud of you for going thru with it!! Congrats. Glad it went smoothly. I'm also jealous at how fast your process to get the Tysabri went for you! Macia - it might be me you read about who was having trouble. I'm hating the TOUCH people. Actually, I'm hating everyone and everything right now. However - I'm sad to hear you have such problems with the Ty - and I admire your willingness to keep going with it. Also - why don't you go for a second opinion - it sounds like doc isn't always listening to you? Well, everyone - I'm still struggling to get the Tysabri. I haven't been around here b/c I have been SO depressed and upset since last Wednesday. The runaround from my doc's office and the infusion centers and TOUCH just made it all so unbearable for me. I finally just let go and didn't do anything b/c I couldn't handle it. I don't have the energy or fight in me - and really, I planned on calling it "quits" permanently, so to speak. Thursday I was so close to just ending it all. I'm still struggling with this - but made an agreement on Friday night with my two close friends (basically they are my family and all I have in this world) - that I would wait and try the Tysabri once and see how it goes before making any "decision" about my life. Well, on Friday it semeed that TOUCH had found me an infusion center that would be able to take me this century ;) and paperwork supposedly sent off to my insurance company. I was still totally depressed and a wreck - but just kept hanging on. Had a lousy weekend - and Monday rolled around and it all started again - got a letter from my insurance company - who said they wanted further explanation of why I haven't tried the interferon treatments - and if it was contraindicated, they wanted to know why. Well - this should all have been in the stuff my doctor sent over. I called the doc - and they were unhelpful as usual :( I made it clear that the doctor needed to have a letter written to the insurance company ASAP. Called on Tuesday - he hadn't done it yet - but they actually put me on the phone with him. He said, "Oh, i thought i did that all when I sent it in?!" - I told him the insurance company wanted further information. The interferons are contraindicated for me b/c I have a history of VERY severe depression and none of my docs think we should even risk it right now. So, the neuro said he'd write the letter. Fast forward to this morning (Wednesday) - and I get a call from someone in his office who says, "Dr. W has written the letter, where do you want me to send it?" And I'm like WTF?!?! You got the same letter from Blue Shield that I did - you're supposed to fax it to them! She said she would. Thirty minutes later, I get a call from someone else in the office who says that Blue Shield just called to tell them I wasnt approved. So I asked her if they sent in the letter via fax to them - and she had no idea what I was talking about - even though it was she that I spoke to on Monday and yesterday about this!! I refreshed her memory and she said she'd check. she told me that BS said I'd have to appeal - so I asked her if they would help me with the appeal, etc. and she didn't have anything to say! I couldn't believe it. In the meantime, I called Blue Shield (aka BS) - and they said they didn't get a fax today - but that they received the additional information on Monday!! and that they based decision on that. I was thoroughly confused. I said, no, my doc's office said they just faxed it to you. I should've known better b/c when I asked them to fax BS I also asked them to fax to me - and I didn't receive it either!! Grrr. I remained calm and called doc's office again. I said please re-fax it to me and BS. I also asked if somehow our lines got crossed - and did they send something else to BS on Monday after they received that letter. She said no, they didnt. I called BS again - and they had gotten the fax now - and they said they would put it back to be reviewed again. At this point, I'm not anywhere near optimistic. I read the letter the doctor sent and it was one sentence and very bland. He could've been a little more aggressive/assertive - and pled my case. As a backup, I left a message for my shrink, hoping he would write a more impassioned letter. He called back tonight and said he would, but he wanted me to come in and write it with him - and he can't do that until Friday. I'm so exasperated. BS was going to re-evaluate my stuff tomorrow - but now I need to call them and tell them not to do it until Friday or Monday when they have other letter. In the meantime, like I said, I'm not the least bit hopeful right now. None of this has gone remotely well for me for the last 5 or so weeks. I've never had problems with BS approving stuff for me - so this is a first. Until now I have barely taken the pain meds the doctors have given me - b/c I don't like pain pills...but now - I'm taking them. They aren't killing the pain....but they're making me "numb" emotionally - somewhat. I'm so tired of the pain...I'm tired of crying. I'm just tired. Sorry this was so long - I don't know what to do - and I guess just getting it out helps a little. :( ~Keri ps/all of this aggravation - fighting to get on a drug that might kill me or destroy my liver or give me cancer.... lovely, huh? |
Red - you have a PM.
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Awwwww, Keri, I am so sorry for all of this pain and agravation you are going through..:( I hope it all gets straighted out and, IF HE wants you to have it, you get your first Tysabri infusion soon.
Depression Sucks, please hold on.:hug: We are all here for you...:grouphug: |
I Can't Believe It!!
Okay-I can't believe it!!
As I mentioned above - have been so depressed and beside myself. Last night I was looking at betaseron, rebif, and avonex - deciding which one I would pretend to try so that Blue Shield would let me have tysabri when it "failed". (FYI - was leaning toward Rebif, just so I could carry around my Rebiject! what a name!) Laying in bed this morning - preparing my day - going to shrink to have him write a letter to BS... Then off to neuro b/c I was certain the letter wouldn't be enough for BS - so i'd start the process of the interferons. Well - my phone rings - - - - Who the heck is calling from North Carolina?! Hmm. Wasn't going to answer...but I did. One of my lease favorite people - - or should I say formerly least favorite... It is my case manager from TOUCH! I figure he's calling to "gloat" in a way that BS denied me. Well - he tells me that he just got off the phone with BS - and that I was approved!!!!!!!!!!:eek::holysheep::Speechless::Tra peze 2::Excited::Head-Spin::Thats-Funneh::icon_question::partytime2::Dancing-Chilli: I was in total shock - and said - "but but but - I wasn't approved" - and he spoken with them just now - and had it taken care of. I hadn't even thought to call TOUCH to help with this - b/c we've seen how good they are at picking their noses - but they haven't done much to help me before! Dealing with them is like :Bang-Head::mf_argue: - so I didn't bother. Couldn't/can't handle any more aggravation. I'm still in shock. I called the infusion center - it's actually a main office that handles 3 locations. Gave them the auth # - and they will call me back within 2 hrs to get me scheduled. First I have to have a consult...then I can get my poison - uh, I mean my tysabri :p tee hee. Hopefully it won't be weeks waiting for an appt! I'd say I was keeping my fingers crossed - but I can't - - my fingers hurt from being crossed so much (okay, reality - my fingers hurt from the MS) OMG - the infusion place JUST called (as i'm typing this) and said I wasn't approved!!! WTF?! But she told me she was getting this info from the doc's office -NOT Blue Shield. The doc's office doesn't know yet - b/c BS didn't send them stuff. Okay - let's hope that is the case - b/c if TOUCH Fuc%ed up again - I can't handle it - I can't. I want to say thank you to everyone who has helped - even just by being by my side, so to speak, throughout this. :You-Rock: But now I need to go sit and freak out that hopefully this woman got her info wrong at the center. Oh, and they have no idea when they can even fit me in, etc. and she won't even look into it until she knows for sure! I hate them now. Oh, "full" according to this center is they have 40 people who take Ty and that's all they will do! Be back - when I know more..... wish me luck. ~Keri |
Scheduled!?!
So, as of now, I'm scheduled for APRIL 1st at 8:30am - AT THE LOCATION DOWN THE BLOCK FROM MY HOUSE!!
However, they told me that they weren't sure it would just be consult or consult and meds. So I have to wait to see if I can get both - though the TOUCH people seemed sure I would get the meds the same day. OMG - can't breathe - can't believe it! ~Keri |
Congratulations! I'm trying to get my infusions at my PCP, who is just a mile away, but he's not in network for my financial aid ...:mad::mad::mad:
So I'll probably have to go down the mountain to Denver. Keep us posted, this is exciting news for you! :Dancing-Chilli::Dancing-Chilli::Dancing-Chilli: |
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