Hi. So here I am back to "real life" - the honeymoon is over and now I have to get back to addressing the biggest topic on my mind - my MS and continuing leg spasicity, leg weakness and pain. Before we went to Jamaica my Neuro had decided that since Rebif didn't work for me I should start Tysabri. WOW, Do you want to try another med first before I try something that has to be infused to me at a Cancer Center? Really?. I didn't argue at the time, I told him I would research it and get back to him. I had more important marriage issues on my mind and my fiance was jobless at that time.
So, today I go through 2 weeks of mail and see that my local cancer center has set me up with my first infusion on December 3rd. WHAT?! I got NO phone call about any of this and December 3rd is THIS Wednesday. I was notified by MAIL?! I pretty much decided that I would be calling them to tell them I haven't even decided if Tysabri was the option I wanted to pursue.
Tonight, my new hubby and I decide to view the Tysabri DVD and see what it says. We did not even get through 1/2 of it and he paused it turned to me and said, Yeah, you're not doing this. I emphatically agreed. For me/us, the risks out weigh the reward. The video even says Tysabri is recommended for those patients who have not found success with one of the other MS Therapies. In other words, use this when all else fails. Well, I haven't even tried ALL the other MS Therapies. Yes Rebif did not work. And Avonex I am allergic too and I've had some really bad site reactions to Copaxone (though not stopping me from taking it), but I've not tried Betaseron yet and may prefer to deal with my Copaxone issues before taking Tysabri.
I'm not saying Tysabri doesn't work, it must do something otherwise why would it be an option. However, they even state in the video that they've only done 2 years of research. 2 years...that's it?! and the "Common" side effects are crazy - Lung Infection, UTI's, Vaginitis, Joint and Extremity Pain, Fatigue etc...So hubby turns to me as says let me get this straight this drug under "common" conditions will give you problems or symptoms you already have and want to get rid of? I know this sounds very negative towards Tysabri. It's not meant to. I was just shocked at how quickly my Neuro went here without even trying something else first and I was also a bit surprised how fast they approved this for use with MS - now for all I know there may have only been 2 year studies on the other therapies too. The difference is the side effects and well there is the risk of PML and Death with Tysabri - can't say I've heard that one before when watching these videos and researching Therapies.
Bottom line is tonight I decided, Tysabri, is not for me....yet.
11 comments:
Well of course every one is different but for my husband the Tysabri is fabulous. Not even a hint of a side effect and he was having so many relapses I thought he had become secondary progressive but once he started the Tysabri? Not even one replase in the last year. One of my co-worker's wives is on it too, same for her.
Pete tried Avonex, Copaxone, and Betaserone (never Rebif because it is the same drug as Avonex and he developed antibodies).
Anyway - all the stuff they tell you is scary and reading here in the blogosphere it seems that a few people continue to relapse on it. So it's not a guarantee. Hubby was on Betaserone for 4 years before it stopped working for him, at first it worked very well. I'd say it's worth trying first - but it has the same somewhat severe flu like symptoms as Avonex and must be injected every other day. That part sucked and for him the symptoms got a little less but never really went away.
Hi Lanette: Welcome back.
I think (my opinion only) that you should cancel the Dec 3 appt until you are comfortable with a decision YOU (and hubby, of course) make.
I just want to say that Copaxone, Betaseron, Avonex and Rebif are not the only choices. Yes, they are injectables, but there are non-injectable choices as well.
Although I choose to not be on ANY of the choices, I think you would do yourself a great disservice if you do not investigate EVERYTHING that is out there.
LDN - is Low Dose Naltrexone and you can read about it here:
http://www.lowdosenaltrexone.org
then click on LDN and MS
It is available under the brand names ReVia and Depade. Liver function tests are required before naltrexone is prescribed and every month for six months thereafter.
Alcohol consumption should be eliminated for any of the choices. It simply doesn't mix well with MS - been there and done that.
If you are going to start a family, it is important to read up on everything so that you know where you stand with fertility issues and later pregnancy.
There are diet changes you can implement (which is the way I treat) and supplements that can be added to your daily regimen. I can email you if you want.
Novatrone is another choice - not my choice and certainly only for those who have tried them all, it is injected once every 3 months for up to 3 years. Another drug of last resort. Novantrone may be tried if you develop severe side effects from Betaseron, cannot take the medication for some other reason, or continue to have active disease. (A seriously I REALLY MUST THINK ABOUT THIS drug)
You can read about the MS diet here: http://www.ms-diet.org/
Vitamin D3 has been in my regimen forever. In order for the vitamin d supplement to be effective, it must be taken with adequate amounts of both calcium, and magnesium. Although my bones break easily, I believe this helps reduce my number of fractures. Plus I take Fosamax once a week as well. I used to have at least two fractures PER YEAR and have reduced it greatly to one every 3 to 5 years.
Lots of stuff to talk about, but this is just a sample. PLEASE read up before you make a decision. Don't let anyone RUSH you into a treatment (injectable or not) until you are thoroughly educated.
I am available for questions by email - if I don't know answers, I will find out the answers.
Take care,
Anne
Hi Lanette--
Yes, it sometimes seems like doctors push Tysabri on people who might do okay on one of the injectables. I do decently on Betaseron, but I do get the flu-like side-effects occasionally. Sometimes still badly. For the most part this drug has worked for me, but I have a pretty moderate, steady course of MS. Almost a text-book RRMS case. I take an antidepressant so I don't know if the depression side-effect from Betaseron is going on. Betaseron can also cause thyroid and liver problems, so I get my liver enzymes and thyroid checked yearly.
The low-dose naltrexone is still speculative. I've been following it for the past few years, and more research is being done, but it isn't yet approved by the FDA. My neuro is fantastic, and he still doesn't think it is a viable, enduring option-- YET. I'm going to wait and see on it, because I'm very cautious about these things.
It's definitely annoying trying to decide which drug has the most benefits and the most tolerable side-effects a patient can live with.
I wish you luck and peace of mind with your decision.
Sincerely,
Jen
Hi Lanette,
You've got a big decision to make. Certainly don't be rushed into this, but also don't be increasingly alarmed that Tysabri infusions are given at the Cancer Center. It's just a place which is well-equipped to handle infusions.
Among the Interferon drugs, Betaseron delivers the highest dose at 875ug per week versus Avonex (30ug) and Rebif (132ug). So Betaseron is considered a high-dose immunomodulary therapy, appropriate for patients with high inflammatory disease and high tissue destruction.
I got this information from a lecture given by an NIH director just this fall. The other therapy mentioned for a similar patient with high inflammatory disease and high tissue destruction is Tysabri.
Of course there are risks involved with Tysabri, but some folks see absolutely great benefits, like Tricia's husband. Nobody has died from Tysabri since the trials and the reason for those deaths has been determined to be related to severely compromised immune systems.
During the lecture, it was mentioned that Tysabri is actually more effective when used earlier in the disease process, while there is still an inflammatory element.
I don't know what you should choose, that's for you, your hubby, and your doctor to decide. Perhaps the doctor wants to be more aggressive now because of your family history and having failed some treatments already.
Good luck and cancel that appointment if you're not ready.
Tricia - I'm glad Tysabri has worked so well for your husband. I just had my first flare in 5 years this past summer and granted it was a long flare - I'd say finished the end of October - I'm not ready to go to what may be considered one of the most powerful MS meds yet. I need more opinions on the status of my disease first.
Anne - Thank you again for the wealth of information. I am aware of the other options as well as diet and supplements. I think this decision would be easier had I not seen what my mother went through with her version of the disease. I plan to make sure I am well informed before making any decisions going forward.
Oh and why do you say/think Alcohol and MS do not mix?
Jen - What is a text book RRMS case? Seriously? Where can I find exactly how that will go? I feel like I am not getting the right information or answers when I compare it to when I was growing up in a house with the version of MS disease my mom had. And Ironically, my father has blocked out all memories of how my mother's disease began and progressed.
Lisa - I was alarmed it would be given at a cancer center more because I don't think I could emotionally handle the illnesses I would see around me.
"Among the Interferon drugs, Betaseron delivers the highest dose at 875ug per week versus Avonex (30ug) and Rebif (132ug). So Betaseron is considered a high-dose immunomodulary therapy, appropriate for patients with high inflammatory disease and high tissue destruction." - - - Ok, so 5 years ago I was on Avonex and after several years I suddenly had an "allergic reaction" and I started Copaxone. I had really bad site reactions (even the neuro agreed) and I on my own stopped all meds for about 2.5 years. I had MS but just the "beginnings of it" and well ignorance is bliss for a few years was completely true! So fast forward to this past July when I had my first flare in 5ish years, or first noticable one anyway and this time I'm down and out for months with now perm walking problems, leg weakness and spasicity here to stay. Oh and I have "several" spinal lesions now. I tried Rebif because my Neuro said it works better on Spinal MS than the other DMD's. Rebif sent my anxiety into overdrive and made me feel like I was going out of my mind. Interferon's + Anxiety = Crazy Lady. LOL :)
And So now I am here, trying to figure out what direction to go next. And you said it perfectly above - Tysabri is indicated for patients with high inflammatory disease. I find it hard to believe that with less than 12 total lesions between my brain and spine that I am one of those patients. I guess I just need another opinion and more information. Again that you for sharing your wealth of knowledge! :)
And I did cancel that appointment for now.
Hi Lannette,
I'm not sure where to start when commenting (if I may) on sections of your post..., but first of all - congratulations on your marriage! What an exciting & hopeful time for both you and your new hubby as you each face the challenges of your futures together.
Choosing a DMD (Disease Modifying Drug) is never easy considering their side effects & consequences our poor bodies pay when injecting these medications (injection site reactions, not to mention pain).
What you do have to seriously consider is the progression (even to the point of being in a wheelchair or bedridden) that our disease will take even if you feel better or are on a different DMD, because that's just the nature of our disease.
You said, "the biggest topic on my mind - my MS and continuing leg spasicity, leg weakness and pain. Before we went to Jamaica my Neuro had decided that since Rebif didn't work for me I should start Tysabri"..., you might be surprised to know that the older generation drugs (the ABCRs) have efficacy in preventing further relapses by only 29% to 34% [respectively] - Avonex 32%, Betaseron 34%, Copaxone 29% & Rebif 32%. Tysabri has an efficacy rate of 67% in preventing further relapses and is the only approved MS medication that has data supporting the fact that it also slows the disease process down as well as supports significant improvement in Quality Of Life.
I have had MS for 32 plus years... failed both Avonex & Copaxone and severed horrible side effects and injection site reactions from both of them. As of last week, I have completed 28 Tysabri infusions so far...and to be quite honest, having an infusion once every 28 days is a delight compared to the shots which must be administered every day, every other day, three times a week, or intramuscular once a week.
I have zero side effects from Tysabri (most MS patients on Tysabri therapy have reported little to no side effects), and I have not had one single relapse in over two years - plus my new MRIs taken in June 2008 show absolutely no new lesions since starting in October 2006. In addition, the progression of my MS has significantly slowed down.
You also state, "...you're not doing this. I emphatically agreed. For me/us, the risks out weigh the reward. The video even says Tysabri is recommended for those patients who have not found success with one of the other MS Therapies. In other words, use this when all else fail".
Please note that Tysabri is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, an alternate multiple sclerosis therapy. This language does not preclude Tysabri's use as a first-line defense against MS, especially in patients that have an aggressive form of MS. What this basically means is (in my opinion) because of Tysabri's efficacy, more and more patients & their treating physicians are choosing to start treatment with Tysabri as soon as possible and not risk further damage caused by an attack/disease progression (which might become permanent) when they don't have to... "Time Is Brain", know what I mean?
Risk of PML is 0.1% or 1 in 1000 patients (it is now actually less than 0.1% as there are over 35,500 patients on Tysabri).
The risk of PML is due to having a severely compromised immune system (or a very low immune system). A compromised immune system can also develop from a drug interaction between different medications (Tysabri can only be prescribed as a monotherapy - by itself). The expert authors of the New England Journal of Medicine attribute the risk of PML to a diminished immunosurveillance and not to Tysabri. See: http://tinyurl.com/2mhn82. All drugs risks, even aspirin, but what a lot of people don't seem to understand is that the patients that developed were all immune compromised even before startin Tysabri.
Lannette,I'm not trying to type you into Tysabri therapy because I believe that choosing a DMD is a very personal choice and one which must be respected by others, no matter which choice that might be..., I am only trying to help educate you and your new hubby as to the accurate facts regarding Tysabri so that you hopefully don't become worse physically & progress needlessly in your disease because of making an uninformed choice to select a less affective D.M.D. to help fight your disease.
I testified before the FDA AC in March 2006 at the Tysabri hearings and have been researching this medication since 2000, so I do know a little bit about it. (Tysabri/Antegren has been in human clinical trials since at least 2001).
Your treating physician appears to have your best interests at heart... why not make a list of questions about Tysabri and discuss them with him? He should be your best source of information if you trust him.
If either of you have any questions about Tysabri that I could possibly help you with, please feel free to contact me at LGLBGL2003@aol.com . You could also visit my blog - Living with MS-My Tysabri Diary(if you like) by going to:
http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/.
In any event, I wish both of you nothing but the very best,
Lauren :)
Why do I say Alcohol and MS do not mix?
As you know, with MS there are balance issues, bladder, walking, talking, etc. problems and alcohol only aggravates these things more.
Some people experience numbness of face, arms and legs while drinking or wake up the next morning with it.
Also whiskies and beer contain gluten which can aggravate the colon.
There is nothing wrong with one or two drinks every month or so, but continuous consumption of alcohol (daily, weekly, etc.) can alter any MS symptoms one is having for the worse.
Many MSers who are stopped by police while driving are often accused of drinking when in fact they have not imbibed. MS can look that way to the un-informed.
You will never know unless you see for yourself. Try a week with no alcohol. Then say on a weekend, have your normal consumption and the next day, weigh your demeanor and symptoms to see what is different. If you don't experience anything, then good for you. But if you do have exaggerated symptoms, then maybe drinking alcohol is not for you.
I have a friend who drinks whisky and soda every Saturday night with her clubbies and every Sunday, she pays for it. She considers it the price she has to pay to keep her social life. Sometimes it is Monday before she feels back on track.
I hope that answers your question. Take care, Anne
Hi Lauren - Thanks for your comment. I appreciate hearing from someone on Tysabri. I just don't think it is for me right now. Primarily because I keep getting told by 3 different Neuro's that I have a "mild" case of MS and my previous doctor wasn't even sure I could be considered having it because I only have 4-6 lesions in my brain...till I had a flare from new lesions in my spine.
I'm not sure any DMD's are for me right now. I have to do much consideration, especially since I have a family history of it.
Anne - Thanks for the info, I maybe have 2 drinks socially like every other month or so. I was wondering if you had another reason that I had not thought of yet. :)
Hi again, Lanette--
What a decision you have ahead of you. I guess what I mean about being a textbook case of RRMS is that most of my serious symptoms-- swallowing issues, exhaustion, walking problems due to my left leg, muscle spasticity, vertigo, and severe neuropathy--- ease up considerably during remissions. A lot of people have day-to-day issues from previous attacks, but mine so far are moderate (depending on the day.) I had one year of out-of-control symptoms where I was taking Baclofen for muscle spasticity and Neurontin for neuropathic pain, but in the past three years things have eased up and I now only take an antidepressant and the Betaseron.
Betaseron is a different form of interferon (beta 1-b) than Rebif and Avonex (beta 1-a), so it is comparing apples to oranges with the doses. My neuro has told me that Rebif and Betaseron are similar in levels of effectiveness (and not to compare the doses of the two), which is all that matters. Avonex is a watered-down version of Rebif, used for newer patients.
The Tysabri issue must be difficult. My friend who has MS went on it about a year ago, but she did exhaust her options: Avonex and Copaxone were considered too weak, and she had elevated liver enzymes from the Rebif and Betaseron. If you do consider trying Betaseron, maybe an antidepressant might help (if you are not already taking one.) I love mine for reasons beyond the Betaseron injections!
Drinking: well I don't take too many meds, so I still partake. It's one thing I can still enjoy and I do. Especially red wine-- isn't that supposed to be good for us anyway? Hee hee...
You're in my thoughts and I hope the decision gets a little easier soon.
Sincerely,
jen
Tag, you're it if you want to participate. Hope things look up for you soon.
Hugs, Weeble Girl
Hey Lanette
Congrat's on the recent wedding - it looks like it was a superb location for such a great day.
Over in the less enamouring world of Tysabri and MS meds: I have been on Tysabri for six months now. It was more than three months for me between the dr first proposing it and me finally ringing him back to put the wheels in motion (as compared to his: if you could just let me know by ... tomorrow).
But I wanted to just remark on a slightly sideways aspect re: the infusions being at a chemo day ward. I can recognise the trepidation about being in such an environment but for me it has turned out to be one of the unexpectedly positive aspects of being umbilical corded every four weeks to the hospital, believe it or not.
The first time I went, one of the women there was having her last treatment after a year and a half of treatments. She'd just gotten her all-clear. Her oncologist came down to give her a hug. Her daughter was there waiting to take her off to lunch to celebrate (glass of champagne included). They had olives from their olive farm for the chemo nurse to thank her. It was wonderful. Two of the others there were starting their first doses of chemo and while I am sure that must have been a daunting day for them you'd would never guess it from the conversation, the spirit of the place was wonderfully uplifting.
Of course, it's not always been quite! like that but still, it never ceases to amaze me the interesting and wonderful stories people share with me while I am there. And it has never been remotely negative. If anything I find I come away humbled and really glad to have had the privilege of meeting the people I get to meet there.
All the best with your decisions and having the time to think them through beforehand.
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