just offered treatment which one ????

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paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/10/2008 12:03 PM (GMT -7)   
hi i am paul from the uk i have just been diagnosed in june with MS i have had at least 5 relapses since december 07 its been a long road and my neuro has decided that tysabri is a good option. i just dont know and would love to hear from anyone with their experiences on any of the drugs available i just dont know whats best. HELP!!!!!.

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 8/10/2008 1:45 PM (GMT -7)   

Hi Paul, and welcome!

 

I’m so sorry to hear about your dx and the rough time you’ve been having. I hope this board can provide you with some support and information. Unfortunately none of us can tell you which med is the “right” one for you at this time, as this is something that you need to decide with your neuro. However, we do have members on here who have experience with pretty much all the meds, including Tysabri. I’m sure people will be happy to share their experiences with you.  

 

I’ll start, although I’m not sure how helpful my experience will be: I was on Copaxone for around 9 months, and tolerated the injections pretty well. Copaxone is a daily injection, and can be irritating to the skin. When I first started this med, every shot was a big deal, but after a few months it became a part of my routine. I had the common skin issues at the injection sites, but no other side effects while I was on it. I can’t speak about how it affected progression as it takes about that long to start “working,” and my situation is a bit complicated at this point. However, there are other members on here who are doing quite well on this med. Copaxone is not an interferon, so it doesn’t have the flu-like side effects that are common with the interferons (Avonex, Betaseron, Rebif). There is a chance that you can have an Immediate Post Injection Reaction, which can be very uncomfortable but is harmless.

 

 The board is pretty slow right now, but I’m guessing others will be along to share their experiences too. There are past posts from the Tysabri users on this board if you want to read them, and hopefully one of them will see your post as well since this seems to be the direction your neuro would like you to go.  

 

Best of luck to you, I know this is a big decision.

Sunny


paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/10/2008 2:19 PM (GMT -7)   
Hey sunny thanks for the reply i know that the decision rests with me and i am just so up in the air. tysabri scares the hell out of me and i just dont know which is the better of the other bunch??? my head is in bits at the moment with pros and cons. i think some chatting with users of some of the treatments will help (i hope) and wont cloud the issue any further coz its foggy enough at the moment.

i hope you are dong well and i will let you know how i get on thanks again it means alot.

Paul c

Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 8/10/2008 3:58 PM (GMT -7)   

Hi Paul,

 

I think it can get very overwhelming dealing with a new diagnosis, and then to have to make this kind of decision on top of it would make anyone’s head swim. I just want to let you know that you are not alone, and that many people on this board have been in a similar position.

 

Have you asked your neuro if he/she has a second choice med recommendation, should you decide not to go the Tysabri route? With regard to the CRABs (Copaxone, Rebif, Avonex, Betaseron) there doesn’t really seem to be a clear-cut “best” med out there.  If your neuro doesn’t have a preference, the best med for you to start out on is the one you can tolerate and take consistently. Everyone is different, and some do better on a particular med than others. Unfortunately you won’t know how you personally will do, until you try one out yourself. However, you might look at factors like how often you have to take the medication, potential side effects etc. as you make your decision.

 

Also, it is not all that uncommon for people to switch therapies at some point. Your neuro will monitor how you do on the med, and if it doesn’t look like it is the right one, he or she might switch you do a different therapy. Okay, I’ve probably just made your head swim even more now (I know I’ve confused myself ;-)), sorry about that.

 

I see that you mention wanting to chat with other people who are on these meds. I wanted to let you know that we actually do have weekly MS chats each Monday at 4 pm pacific, 5 pm mountain, 6 pm central, and 7 pm eastern time. Unfortunately that would be the middle of the night for you there in the UK, but if you happen to be a night owl you are more than welcome to come join in.

 

Hang in there, and  yes, please do come back and let us know how you are doing.

Sunny

Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 8/10/2008 5:57 PM (GMT -7)   

Hi there Paul,

This is a huge decision and like Sunny said, you and your neurologist have to make that decision. I was on Rebif for 14 months with zero success. I was getting exacerbations every other month it seemed. Never had any remission. As soon as i would start to feel a remission, it would hit me again. I was diagnosed in dec 2006, but it id seeming as tho i have had it for 15-20 years, just very mild. When the Rebif wasn't working for me, my neuro suggested Tysabri, and i was ready, because i knew in my heart i was going to have to change meds so i did alot of research about it. It was a huge decision for me, but i was scared that i was progressing to a more advanced stage and i was petrified of getting worse off than i already am.I was scared to take it because  i have a daughter and was it selfish to to put myself at risk, or, selfish of me not to take the risk to possibly have a chance at better quality of life. I went back and forth with this. Thats what made the decision for me. Usually this med was suggested for patients who can not tolerate other ms drugs, but now, the more i read, it seems as tho they are beginning to start patients with this drug. I am by no means an expert on this drug, but if you have any questions i would be more than willing to answer them. I am doing well on Tysabri. I am scheduled to go for my 6th infusion this month. I really do not have any side effects with this drug. A slight headache afterwards, but thats it. The Rebif gave me terrible body aches which i didnt even realize it was doing, until i stopped taking it and realized how much better i felt with that out of my body. What did i know, this was all new to me. I was hurting for almost 2 years before i finally got the diagnoses, so i just thought it was the MS making me feel that way.

Good Luck in your decision, you will make the right one for you, and just remember you can always change,
Take care
Lynn
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


Willowmom
Regular Member


Date Joined May 2008
Total Posts : 88
   Posted 8/12/2008 8:45 PM (GMT -7)   

My computer has been out of commission, at least for me to reply for a few weeks.  But glad to be back and I'll throw my two cents around a bit this evening.  I did Betaseron for 4 years.  Had no new relapses during that time.  I did develop chronic anemia and too much bruising at injection sites.  So I took 6 months off and blood counts came back up.  Now I'm on Avonex.  A little more mentally challenging to learn to do the IM injections myself, but I am doing it.  A note on the Avonex- for myself, and for many others- although not all, I had very severe flu-like and debilitating side effects from the pre-filled syringe.  I have changed to the kind that you re-constitute and it is night and day.  I still get some achey and fever reactions, but not like the others.  Happy to answer more on either of these meds and my response to them.  But everyone reacts so differently.  Willow


paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/13/2008 2:45 AM (GMT -7)   
thanks again for the insight to more meds i am leaning towards copaxone i think but i am speaking with my neuro again on monday i am thinking ill try this as it seems to have least side effects i dont mind the injections (at the moment ) but i may feel differently this time next year??! i hope all is well with you guys

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/15/2008 9:32 PM (GMT -7)   

Hey Paul,

I am sorry I am getting on here so late.  I am approaching my two year mark with copaxone.  I was just telling a friend that I can't believe that I have done hundreds and hundreds of injections.  It is very easy.  I has not become a drag at all.  Good luck with your decision.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/16/2008 11:02 AM (GMT -7)   
thanks gretchen that kinda seals the deal i think copoxone it is. untill i speak with neuro on mon and my head will spin again ill bet. thanks for the reply

calicorosie
Regular Member


Date Joined Aug 2007
Total Posts : 48
   Posted 8/16/2008 10:14 PM (GMT -7)   

I am happy to see this thread. I have been away from my computer a lot lately and was finally able to log back in here this evening.

Sorry Paul to hear of your diagnosis. I am a fellow Brit but live in Canada :-) I was diagnosed with relapsing/remitting MS in May of this year and am still dealing with that news. I have to attend an education session next week at the MS clinic to learn all about the available treatments.  I think I am most worried about the possibility of flu-like symptoms as I have 3 kids who keep me busy.

Reading here about other people's experiences is very helpful so thank you to those who have posted.

Take care  


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/16/2008 10:48 PM (GMT -7)   
I don't want to sound like an advertisement for copaxone, but I am pretty happy with it.  We have had members not do well on it.  We have had some who were very allergic to it and some that have intolerable IPIRs (immediate post injection reaction).  The IPIR is a reaction that causes chest pressure, shortness of breath and essentially, you feel like you are dying but it goes away after a short while.  For some, these reactions are intolerable.  There can also be some local reaction.  You will probably develop lumps and bumps and bruises.  You have to rotate your injection sites.  I don't find these local lumps too bad at all.  It is just one of those things you get used to.  I am quite happy with the results.  I have no idea if another med might work better.  The bottom line is, none of the meds available will stop this disease.  If you can find one you tolerate, then you may have a chance to slow things down until something better comes along. 
 
Remember that you have to do more than just take a progression therapy.  You need to eat right, exercise as much as you can, get enough sleep, manage your stress levels and think positive.
Gretchen       co-moderator MS board       diagnosed with MS July 2006


paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/17/2008 6:48 AM (GMT -7)   
yeah i have altered my diet totally organic now and at the moment my excercise has gone to zero apart from some gardening i feel like i am stood naked in snow and my feet and legs are frozen i know the british summer is bad but i am sat infront of the fire !!! i am not cold but my head thinks it is very strange.
at least i can squint at the tv and watch the olympics ha ha. hope all is well and stay positive

paul c
New Member


Date Joined Aug 2008
Total Posts : 6
   Posted 8/18/2008 10:03 AM (GMT -7)   
well i went to see my neuro toda he accepted the fact i was nervous about tysabri and then pickled my head with another treatment he wants to use as my MS is quite aggressive. he told me about Mitoxantrone he wants to go with 3 doses to hit the MS where it hurts early on to attempt to slow it down !!. again i am thinking of the side effects heart trouble and possibly leukaemia!!. bugger! never mind i told him my troubles that i am having now feeeling like i am frozen from the waist down and he has put me on 3 bouts of steroids to calm it down a bit. round 2 tomorrow. confused

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/18/2008 12:32 PM (GMT -7)   
Wow Paul!  I am sorry you are having to do the steroids.  Your doctor really does want to go with the big guns.  Just remember, it is your body and you don't have to put anything into it that you don't want to.  I am sorry you are feeling so badly.  Let us know how you are and what you decide.

Gretchen       co-moderator MS board       diagnosed with MS July 2006


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 8/18/2008 12:44 PM (GMT -7)   
Hey Paul,
Maybe your doctor has this in mind.  You start with the mitoxantrone then you "wash out" for a couple weeks and then you go with copaxone.  It is supposed to be very effective.
 
http://www.businesswire.com/portal/site/google/index.jsp?ndmViewId=news_view&newsId=20070504005103&newsLang=en
Gretchen       co-moderator MS board       diagnosed with MS July 2006

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