Could You be Caught Dead Taking Tysabri?
Filed Under Multiple Sclerosis General |
I’ve noticed quite a few hits coming into my site looking for information on Tysabri. Let me state, very clearly, that I have not taken Tysabri, I am NOT a doctor and what this article contains is ONLY MY OPINION and is not to be mistaken, in any way, for medical advice! With that said, here is my two cents worth on Tysabri.
When I first heard of Tysabri (natalizumab) I thought it sounded great. Apparently, so did the US Food and Drug Administration. The medication was “fast-tracked” for approval and was on the market very quickly.
All was looking well and people with MS were very excited about the potential of this new drug. As I recall, it was being tested in conjunction with Avonex. Things were still looking great and then something really bad happened - there were a couple of unexpected deaths related to Tysabri and next thing you know, it’s back off the market.
It seems that, for some reason, people taking Tysabri might get PML, which is progressive multifocal leukoencephalopathy. It’s a brain infection that is very bad and can cause anything from disability to death. There is no known way to either prevent, treat or cure this brain infection. Sounds bad, right?
Okay - the section below is copied and pasted from the Tysabri Patient Medication Guide and I downloaded this guide from the www.tysabri.com website on February 4, 2007 so it’s the latest information out there, as of this posting on February 4, 2007. If you are seriously considering taking Tysabri, I strongly recommend that you go to that site and read everything and understand everything. Okay - from the Medication Guide:
MEDICATION GUIDE
TYSABRI (tie–SA–bree)
(natalizumab)
Read the Medication Guide given to you before you start TYSABRI and before each infusion. There may be new information. This Medication Guide does not take the place of talking to your doctor about your medical condition or your treatment. Ask your doctor or nurse if you have any questions.
What is the most important information I should know about TYSABRI?
• TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.
• No one can predict who will get PML.
• There is no known treatment, prevention, or cure for PML.
• Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other MS treatments.
• Even if you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. It is also not known if treatment for a long period of time with TYSABRI can increase your chance of getting PML.
• TYSABRI is available only through a restricted distribution program called the TOUCH Prescribing Program. In order to receive TYSABRI, you must talk to your doctor and understand the benefits and risks of TYSABRI and agree to all of the instructions in the TOUCH Prescribing Program.
Page 1 of 6
Final
• If you take TYSABRI, it is important that you call your doctor right away if you get any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with TYSABRI.
Also, see “What are the possible side effects with TYSABRI?” for other serious side effects with TYSABRI.
Kind of intimidating, isn’t it? It was to me! And as if that wasn’t enough, the last line refers to “other serious side effects” when you’re using Tysabri. Let’s have a look at that part of the medication guide!
Other serious side effects with TYSABRI include:
• Allergic reactions including serious allergic reactions. Symptoms can include:
• hives
• chills
• itching
• rash
• trouble breathing
• nausea
• chest pain
• flushing of skin
• dizziness
• low blood pressure
Page 4 of 6
Final
• Serious allergic reactions usually happen within 2 hours of the start of the infusion, but they can happen at any time after receiving TYSABRI.
• Tell your doctor or nurse right away if you have any symptom of an allergic reaction, even if it happens after you leave the infusion center. You may need treatment if you are having an allergic reaction.
• Infections. TYSABRI may increase your chance of getting an unusual or serious infection because TYSABRI can affect your immune system.
Other side effects with TYSABRI include:
• headache
• feeling tired
• urinary tract infection
• joint pain
• lung infection
• depression
• pain in your arm and legs
• diarrhea
• vaginitis
• rash
• stomach area pain
Tell your doctor about any side effect that bothers you or that does not go away.
These are not all the side effects with TYSABRI. Ask your doctor for more information.
Okay, these aren’t that bad. Many drugs have the same warnings, for the most part. I do have to say that the two that I changed to red don’t sound that great to me though. The other side effects aren’t that uncommon to see.
To be fair here, I’m not quoting and studies that show any stats on how many people experienced each of these side effects. If you’re going to take this drug, you should be responsible, as the patient, to go and investigate and make a very informed decision before taking any treatment for multiple sclerosis.
My opinion, again, is that I personally wouldn’t even consider this drug at this time. For what it’s worth, I don’t think the drug company wants me to yet either. Since my Copaxone shots seem to be effective, they don’t recommend me for this drug. Talk to your doctor, see what he thinks, become an informed patient and THEN decide what’s right for you.
Oh, one other thing about this drug that’s only been tested for a short time period. Now they want to have it approved for use in the treatment of Crohn’s Disease as well. I know that Crohn’s is a tough thing to deal with, just like MS is, but think about it carefully before you decide to jump on a new medication.
Slightly along the same line of thinking for me, I will not use ANY new Microsoft product until they have released the first service pack for it and I’ve been an IT Professional for 17 years now. If I won’t put a new operating system on my computers until it’s been PROVEN to be stable and safe, why would I want to put a new drug in my BODY until it’s been proven to be stable and safe?
I guess you can tell that I have no plans to start taking Tysabri any time soon! LOL If you do, I wish you all the best with it and I’d love to hear your story of how it’s working for you personally.
Forgive any typos here! I’ve had this article on my mind for a while now and haven’t written it. Today, I had a comment on another post and the commenter was asking for anyone with personal experience with using Tysabri. I guess that spurred me to write this opinion piece! I’ve not really spell checked (although I do know how to spell!) and didn’t really even proof it. This is the first draft and I’m letting it post! If I find anything I messed up on really badly, I’ll go back and try to edit it properly!
Vincent Moore
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19 Responses to “Could You be Caught Dead Taking Tysabri?”
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give me a break with this piece pml lots of drugs cause it but yet are they are on the market? yes
How much is Teva paying you to post this?
Sorry to hurt you guy’s feelings with my opinion….but as I stated, it’s just MY opinion. I have RRMS and haven’t had an exacerbation in over 2 years. Copaxone is working for ME. It’s not for everyone. If the Copaxone stops working then Tysabri MIGHT be a consideration. I personally am not comfortable with a drug that was fast-tracked to market. I’m not comfortable injecting a chemical into my body that’s only been studied for a very short period of time compared to the other C.R.A.B. drugs on the market.
If you choose to use Tysabri, I simply say I hope it works well for you. Your body is your body and you can decide what to do with it. My body is my body and as long as Copaxone is working for me, there is no way in heck that I would use Tysabri.
The warnings that they are required to put in the Patient Medication Guide just aren’t very reassuring to me.
Good luck in your endeavors with if you have MS I’d love to hear how it’s working for you. I’m absolutely open to letting both sides of this matter be heard. As I said in the post, it’s MY OPINION and only that. You don’t have to agree with me and I don’t have to agree with you. We just agree to disagree! LOL
Vince
Oh, don’t let the powered by performancing firefox at the bottom of the post make you think I’m posting for them…. that’s a nice, free plugin that works very well with Firefox for posting to Wordpress blogs. I’m experimenting with it and Deepest Sender, although I mostly still like Bloggar. Just not as useful from within a browser.
Maybe THAT’S why I was accused of being paid by TEVA??? lol
Vince
I’m glad Copaxone is working for Vince. I was on it for 5 years and it suddenly stopped working for me. The only reason I am even considering Tysabri is because I am allergic to the interferons and have had a life time dosage of Novantrone. According to what I have read, Vince wouldn’t be allowed to use Tysabri. It is only prescribed to people who cannot tolerate other therapies.
Hi Mary, thanks for your input on this. It’s true the meds that you’re taking can become ineffective over time. Also, you are right, I’m not a candidate for Tysabri at this time. As I stated in my original post, and I quote:
“My opinion, again, is that I personally wouldn’t even consider this drug at this time. For what it’s worth, I don’t think the drug company wants me to yet either. Since my Copaxone shots seem to be effective, they don’t recommend me for this drug.”
Now let me point out something interesting that I’m going to research a little further via server logs and times of the two earlier comments. Have a look at the thread posted at this location:
http://www.investorvillage.com/thread.asp?mb=160&pt=m&pm=76626&nm=76650&sync=1&tid=1374400
The fourth post on that page, which is also currently the last post said, and again I quote:
“Re: Either all these “Tysabri—Wonder Drug!!!” stories are BS or Tysabri
This guy thinks the later…
Could You be Caught Dead Taking Tysabri?
http://managing-multiple-sclerosis.com/2007/02/04/could-you-be-caught-dead-taking-tysabri/
Someone please set him straight!”
Hmmmmm…. shortly after the time of that post, I’ve suddenly got a couple of people who disagree with my view on Tysabri. Ironically, that site is a site for investors called “Investors Village”. That post was made in a thread discussing Elan, which is the manufacturer for Tysabri.
I had two hits, according to MyBlogLog.com, that came from that location. The time of the comments is strangely close to the time of the two comments. I do intend to investigate a little further to see if those comments did in fact come from the two hits from the investor board. If so, it kind of tells us something, doesn’t it?
These investors could give a damn less about us, the MS patients, as long as they can make money from the drug. Wonder if they’d be willing to inject this stuff into their bodies?
I’ll dig into this further and verify the times and originators of the first two comments. I’d love to know that they actually came from there!
Stay tuned folks! I used to be a police officer, in the pre-MS days and I love investigating stuff!! This little coincidence has definitely got me interested enough to dig a little deeper and verify my hunch!
Vince
Ahh… even more interesting as I dig a little more!
The 2nd comment above from Mike, was posted by a gentleman with the email address (and I won’t show it all) *****TAZ@*****.com and there is a user in the thread over at Investor Village who goes by Tazsnapper. Coincidence??
It gets better. The 1st comment above was made by Sal, whose email is salmar***@*****.com and there is a poster at Investor Village who goes by Salmar147. Coincidence again?
Interesting, isn’t it, that these people attacking me for my post are investors and not someone who has to consider putting this stuff into their bodies! Just someone wanting to make a buck regardless of whether it’s safe for us MS patients or not!
Just thought it interesting to show their motives for the attacks…. money and nothing else!!
Vince
http://www1.investorvillage.com/smbd.asp?mb=160&mn=76694&pt=msg&mid=1375666 you need to read more from “mslady” (Lauren) who posts on ivillage and also the Nuerologist posting as “neuro1111″ Lauren has MS and has testified before the FDA and neuro1111 has many patients on Tysabri and by the way NO ONE has ever died on a mono therapy of Tysabri, in my opinion it was pulled from the market because Biogen was too greedy and wanted patients to continue taking their drug Avonex along with Tysabri and the combination was too much immune suppression.Lauren can no doubt give you much more info.
Miles, I did look at several of the postings from both of these people. One thing that, to me at least, is very telling is a statement that Neuro111 made:
“What would no PML after one year prove? The two combo patients were on for 27 and 39 months. Thus, one year is inadequate.”
In other words, even though he is a proponent of Tysabri use, it sounds like even he admits that the length of time patients have been studied is insufficient to rule out PML even in a monotherapy treatment.
I’ve read reports of people feeling like it’s a wonder drug after taking it. I think that’s incredible. However, I’m not yet a candidate for the drug since Copaxone is still working for me. If I were in a later stage of the disease and Copaxone stopped working, would I consider Tysabri? Of course! I’d have to give it consideration. Now though, even if it was an option for me, without longer term studies of it, I’m not comfortable putting that stuff in my body.
If I could go to Las Vegas and play with odds in my favor of 700 or 1000:1, I’d go and play all day long. When it comes to my LIFE though, even those odds don’t make me comfortable. The MS isn’t going to kill me. It would be a shame if the treatment did!
Thanks for the post. It’s nice to see someone with a bit of intelligence comment on this instead of the first two who only care about the dollars they stand to make and accusing me of being paid by Teva. If you HAVE MS, you’ll think a lot harder about this drug than if someone ELSE is taking it!
Thanks for the comment. I may have to become a regular over at Investor Village!
Vince
http://www1.investorvillage.com/recentposts.asp?mid=3656 in case you’re interested that link is to the last 50 posts by neuro1111 I’m glad you are doing ok on your Capaxone but things have a way of changing with MS and you may need this info for future reference.
That’s much appreciated Miles. And, you are definitely correct that things can change with MS! No doubt about it!
I should have stuck that link in my post because I did read most of them. He’s obviously very knowledgeable about the drug. It was still striking to me that he made the statement that he did:
“What would no PML after one year prove? The two combo patients were on for 27 and 39 months. Thus, one year is inadequate.”
This implies to me that even he feels it’s not proven long enough to say for certain that there isn’t a significant PML risk. Until people have been taking the drug for longer periods, that risk can’t really be discounted too much.
If my situation were different maybe I’d consider Tysabri but as I’ve also said, the MS isn’t going to kill me. And I’d be damn pissed off, from the grave of course, if the treatment did!
Thanks for the logical input into this post rather than the illogical posts of the first two commenters!
Vince
Hi Vince, I’m sure you’ve read my posts on the “InvestorsVillage” m.b., and while you also know I’m a big supporter of Tysabri - which is 68% more efficous in stopping/slowing relapses & accumulation of the disabilities therefrom, as well as stopping/slowing the disease process, I will also support anyone’s choice of therapy, no matter which one that may be…I just hope that others make a ‘fully informed’ choice by researching same and discussing the treatment options fully, and in depth, with their treating physician.
I am glad that Copaxone is working for you. You, among others, fall into the minority of MS’ers whose therapy is working, and if you and your neuro have agreed to stay with Copaxone, I pray it keeps you safe from the ravages of MS for many years to come - as we each have our own comfort level when selecting a therapy
Now, on to your post (heehee)..You cite the “Patient Medication Guide/Label” from the http://www.tysabri.com site, which is lovely, but trying to digest 23 pages of ‘medical jargon’ can be quite daunting and scary for a newbie, so I’ll just comment on a few of your remarks, if I may-please:
> (Sentinel trials)…and the Tysabri trials were in monotherapy (Affirm trials), and also tested in the Crohn’s trials.
> 2 PML cases in the Avonex combination trials, and 1 PML case in the Crohn’s trials.
> Tysabri was voluntarily removed from the market until further safety data could be gathered and studied.
>
This is misleading in that the authors of the world-renowned NEJM-Neurol Res, April 1, 2006; 28(3): 291-8, indicated that “…(PML), a rare but deadly viral infection of the central nervous system (CNS) associated with immunosuppression. Owing to the effect of natalizumab on central nervous system leukocyte recruitment, the emergence of PML has been attributed to diminished immunosurveillance. The lack of additional opportunistic or CNS infections among natalizumab-treated patients, however, suggests that alternate mechanisms may contribute to the infectious risk.”
Again, PML is rare, and has been attributed to diminished immunosurveillance, NOT to Tysabri.
>
I wish you hadn’t said that Vince, because it’s simply not true - I think the drug company (Elan anyway) only has your best health in mind - no matter which therapy you’re on, and they leave that decision to you and your dr. (as it should be), and as far as not being a candidate for Tysabri, if you have a Relapsing form of MS and are not immune compromised, you ARE a candidate and eligible for Tysabri, it’s YOUR choice to take it or not, though
The truth is, the person in the Avonex combination trials did not have MS (as later revealed upon autopsy), and the Crohn’s patient received Tysabri as a monotherapy but had a severely compromised immune system to begin with due to being on Azathoprine/Imuran for 6 years. Thus, not one single confirmed MS patient with a non-compromised immune system that received Tysabri as a monotherapy (trial & gen. population pts between 11/04-2/05, approx. 8,000 pts. total), not one developed PML and died, that’s a risk factor of ZERO in 8,000 or 0:8000, amazing, isn’t it?
Anyhoo, all my best to you Vince. Take care now, Lauren
Shoot, these remarks cut out (can you tell I’m computer challenged? lol)
You said, “As I recall, it was being tested in conjunction with Avonex”, to which I replied, “The Tysabri trials included the combination with Avonex trial (Sentinel trials)…Tysabri trial as a monotherapy (Affirm trials), and also tested in the Crohn’s trials.
You said “It seems that, for some reason, people taking Tysabri might get PML, which is progressive multifocal leukoencephalopathy. “.. to which I replied, “This is misleading in that the authors of the…Again, PML is rare, and has been attributed to diminished immunosurveillance, NOT to Tysabri.”
You said, “I don’t think the drug company wants me to yet either. Since my Copaxone shots seem to be effective, they don’t recommend me for this drug”, to which i replied, “I wish you hadn’t said that Vince, because it’s simply not true - I think the drug company (Elan anyway) only has your best health in mind - no matter which therapy you’re on, and they leave that decision to you and your dr. (as it should be), and as far as not being a candidate for Tysabri, if you have a Relapsing form of MS and are not immune compromised, you ARE a candidate and eligible for Tysabri, it’s YOUR choice to take it or not, though.”
Okay, I think that’s about it
Again, best wishes Vince.
Lauren
Lauren, I see what you’re saying here but, from the very first part of the patient medical guide - things you should know.
What is the most important information I should know about TYSABRI?
• TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.
• No one can predict who will get PML.
• There is no known treatment, prevention, or cure for PML.
• Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other MS treatments.
• Even if you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. It is also not known if treatment for a long period of time with TYSABRI can increase your chance of getting PML.
The above seems to contradict what you are saying. They are saying, themselves, that even if you use Tysabri alone, it’s unknown if your chance of getting PML will be lower.
Also, it’s not known if long time treatment with Tysabri can increase the chance of getting PML.
Further, no one can predict who will get PML.
They’re saying that Tysabri increases your risk and they don’t know if taking Tysabri alone lowers your risk for PML.
You’re citing another source, that seems to be contradicting what the manufacturer’s own patient information says. The FDA is obviously forcing the manufacturer to say these things but why, if it’s been proven to NOT be an issue?
I still think that it’s hasn’t been studied in enough patients for a long enough period of time for ME to be comfortable with it. Anyone else is welcome to make their own decision though!
36 months now, if it lasts on the market, I’ll be much more comfortable with the idea of putting that stuff in my body!
Vince
Hello Vince, thank you for your email, even though you didn’t read my last comment section where I put your statements in quotes. Therefore, I suggest you re-read your Blog comments.
Your arguments are not with me, they are with the findings of the learned authors of the New England Journal of Medicine re: PML.
Further, I wished you well more than twice, and you never even reciprocated same to me, not even in your email to me (sigh), oh well.
I won’t post here again. I gave you the facts…believe what you will and do with them as you will. I pray you never have to suffer the disabilities and be left with the permanent residual effects of same that some of us have.
Regards. Lauren
Lauren,
Actually, I sent that e-mail before you posted the 2nd comment with the quotes in place. Sorry I didn\’t follow up on that aspect but I suspected that you saw the e-mail come in and ignored it since you were in the process of posting the correct comment when I sent the e-mail.
Hello Vince, thank you for your email, even though you didn\’t read my last comment section where I put your statements in quotes. Therefore, I suggest you re-read your Blog comments.
And I’d suggest that you notice the time stamps on e-mails that you receive.
I also believe that, since my comment to you was posted after your second comment posted to the blog, it should be obvious that I did read your second comment. The comment that I posted after your 2nd comment, in fact, referred to things that you said in that 2nd comment.
Since my comment followed your second post, and since the timestamp of the e-mail closely matched the time you were sending the corrected comment, wouldn’t it be better of you to assume the best (that your 2nd comment hadn’t posted when I e-mailed you) instead of assuming the worst (that I was essentially rude to you and didn’t bother to read your comment)? Of course, if you’d like to see the worst in people that don’t agree with your opinions, that is your choice. I, however, do not appreciate being accused of not reading your 2nd post and I don’t appreciate you making such accusations when something as simple as posting order, e-mail time stamps and my comments show that I DID in fact read your 2nd comment.
Your arguments are not with me, they are with the findings of the learned authors of the New England Journal of Medicine re: PML.
It’s understood that my arguments are not with you, in fact I didn’t realize I was arguing with anyone. However, if the “learned authors” of the New England Journal of Medicine say, why then isn’t the manufacturer able to say that, as opposed to still being required to have those statements in their literature? Is it because the New England Journal authors haven’t done enough studies to convince the FDA to allow the warnings to be removed?
Further, I wished you well more than twice, and you never even reciprocated same to me, not even in your email to me (sigh), oh well.
As I stated, the e-mail was sent after the 1st comment and before the 2nd comment. In the first comment, it appeared that you were “putting words in my mouth”. When I’m credited for saying things that I did NOT say, it tends to put me in an ill mood. Even so, I don’t believe that I was anything other than polite in that e-mail. Yes, I could have said more, as far as wishing you well in my comment, but in my defense, it was late (12:42 AM, my time), I was tired and had just finished and posted a persuasive essay for a college course that I’m taking. With the fatigue that I, and likely you, experience perhaps I wasn’t as clear and courteous as I intended. If that is the case, you have my most sincere apology.
I won\’t post here again. I gave you the facts…believe what you will and do with them as you will. I pray you never have to suffer the disabilities and be left with the permanent residual effects of same that some of us have.
Lauren, I truly do appreciate your input into this. You have your opinion and I have mine. I’m not telling anyone else what to do. I’m expressing my personal opinion as to what I think. I made that very clear in the post that got the Elan investors at Investor Village so upset. My opinion is what I feel. Honestly though, if there was convincing evidence that Tysabri is totally safe, I’m certain that evidence would have been presented to the FDA and enabled the warnings to be removed. If it’s proven safe, why hasn’t that been done? Elan, and it’s investors, don’t like the thought of making more money by scaring people away with intimidating warnings?
If you choose not to post here again, that’s entirely up to you. You are very welcome to continue to do so in the future, also, if you so choose. I keep expressing that my article is my opinion. Your opinion, and the opinion expressed in the NEJM, is that too. An opinion at this point. It comes across to me as if any opinion that doesn’t match YOUR opinion is wrong.
Maybe I should ask you what I was asked by one of your fellow Investor Village members. How much is Elan paying you to post this?
Regards. Lauren
I do wish you all the best Lauren. Since Tysabri is your choice, I hope it does turn out to be the wonder drug that you hope. I also hope that 2 or 3 years from now, after sufficient long term studies have been done, you won’t regret making the decision to use the drug. I would like nothing more than to see the stock prices skyrocket because Tysabri turns out to be so effective and so safe that it becomes the first line of treatment. I’d jump on Tysabri in a heartbeat if that happens. Until then, with the Copaxone still working for me, I think I’ll avoid Tysabri for a couple of years.
Really and sincerely, Lauren, thanks for your input. As you said, my argument is not with you. It’s not really even an argument at all as far as I’m concerned. Differing opinions do not need to be classified as an argument by adults.
Good Luck and Very Best Wishes!!!!!
Vince
I sent the below e-mail to Lauren as an apology. I pretty well went on the offensive and stooped to the level of the first two commenters from Investor Village. I should not have done that and I do sincerely regret having done so. I\’m pasting in the apology that I sent to her just below here:
Lauren, I really and truly AM sorry. I felt like I was attacked by people from Investor Village and erroneously thought of you as one of “them” and I should not have done that. I let emotions get in the way prior to hitting the send button. It really pissed me off to be accused of being paid by Teva! In erroneously classifying YOU as one of THEM I used their tactic and I should definitely not have stooped to that level.
Essentially, one of the posters from Investor Village initiated an attack on my post, instructing others to inform me, essentially. Sal and Tazz whatever were totally wrong in what they did and I don’t have any good will for them at all. You and Matt, I think that’s the name, made informative comments.
I am a Christian and I really do feel bad for turning to their tactics. Forgive me or don’t forgive me, I just wanted to offer my sincerest apology for doing that. I’m a good person and I’m also an ex-cop! LOL When I feel like I’m being attacked, I have a tendency to go on the offensive. Not that YOU were attacking me personally, I just threw you into the category with the first two posters. I was dead wrong to do that.
I can fully appreciate your condition as I have a very good friend, in your same circumstances, due to chronic progressive MS. Can’t move himself from his wheelchair to the car without assistance. I pray that I never reach that point and I’m sorry that you and my friend did.
If you choose not to forgive me, I understand but I do want to insure you that my apology IS sincere. I’m human and I make mistakes, as I did this time. As we often do, when we make mistakes, I regret having done that. I can’t take it back so all I CAN do is apologize.
Best wishes and regardless of your feelings toward me, I WILL keep you in my prayers.
Vince
My previous comment had an error in it. In the letter to Lauren, I stated that her and Matt made informative comments. It should have been Miles, not Matt.
Sorry Miles!!! Just admitting another human error! LOL
The Patient Connection would like to take this opportunity to invite you to participate in a new blog on Multiple Sclerosis. It would be great if you could do so as it will help us plan research into Multiple Sclerosis over the next few months.
http://www.thepatientconnections.com/blog.asp?uid=15l
What it is:
The purpose of this blog is to help The Patient Connection find out more about living with Multiple Sclerosis and how it is treated, its effect on home and the environment.
Also, you may be aware that in the United Kingdom NICE, the Government’s drug watchdog, has recommended against the prescription of one of the most effective drugs so far developed to treat Multiple Sclerosis. NICE has advised that the efficacy of Tysabri is not proven or that the cost is simply too high.
“In clinical trials, Tysabri has shown a significant reduction in relapse rates and a reduction in the risk of disability progression.”
What does this mean? People with MS could face the prospect of an improved quality of life, would have the chance of staying in work and be independent and not rely on State benefits –
Simon Gillespie said: “The UK is now alone in rejecting this drug. More than 10,000 people with MS in Ireland, Germany, the USA and elsewhere are already benefiting. But NICE has decided people with aggressive MS in the UK are simply not worth it.”
What are your thoughts? How are you currently treated? Are you fortunate enough to have been prescribed this drug? Do you have to go abroad for your prescription and treatment? How are you currently treated? Have you changed your lifestyle? Do you get the right support from the State, employers, friends, family?
If you wish to participate in market research now or in the future you can join our research community The Patients’ Voice here
http://www.thepatientconnections.com/patients-voice/index.html
If you have any more questions please feel free to get in touch with me on Belinda.shale@thepatientconnections.com
Thanks for your help
Belinda
The Patient Connection