It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 07-18-2005, 07:50 AM   #1
Senior Member
(female)
 
Join Date: May 2005
Posts: 109
WOBBLEY HB User
Please, I need to hear from some people not taking CRAB meds

I'm 58 and found out not long ago that I have MS. I've been taking Rebif for 4 months and need to quit taking it awhile because of financial reasons. Please if you are not taking any of the CRAB meds would you please tell me how old you are and how long you've had MS. I'm very uneasy about not taking my med but I don't have any choice right now. I do plan on starting back in about 6 months or so.

I just wonder how many people are not taking the expensive shots and how they are doing? It's really ashame that the meds are soooooo expensive!

 
Old 07-18-2005, 08:00 AM   #2
Member
(female)
 
Join Date: Jun 2005
Posts: 73
fancycanelady HB User
Re: Please, I need to hear from some people not taking CRAB meds

Hi Wobbley,
I'm 50 and have MS for 30 years. I was never even told about the CRAB meds until my last MRI a few months ago when it turned up more lesions. I've had a fairly mild case over the years with only a few problems, but am now experiencing more relapses with worsening problems. I'm currently trying to decide if meds are the way I want to go. I've read so much about the side effects that I'm just not sure. Besides MS, I've got a myriad of other things wrong with me (partially disabled from 5 back surgeries and major kidney disease), that I feel bad enough without adding site injection problems and flu-like symptoms to the list. I guess if the meds actually helped while having pain, etc.. from the relapse, I'd be more inclined to take it, but just prolonging the time between relapses is odd to me 'cause I never had that many relapses to begin with so how do I know they're going to keep coming as quickly as they have recently, ya know?
I'm fortunate that the shots would mainly be covered by insurance with only a small co-pay, but am still undecided!

 
Sponsors Lightbulb
   
Old 07-18-2005, 09:25 AM   #3
Senior Member
(female)
 
Join Date: May 2005
Posts: 109
WOBBLEY HB User
Re: Please, I need to hear from some people not taking CRAB meds

Hi fancycanelady,
Good to hear from you! If I was you I would definately take one of the crab meds since you are covered by insurance. Even though it won't help with your aches and pains it would slow down the relapses so you wouldn't get them as bad or as often (at least that's what they say). You are lucky ... you must have had a very mild case of MS since you've had it for 30 yrs and your dr. did not ever mention taking one of the crab meds ... that is very strange!!! I have never had any side effects except for shot sights and even though I don't like them, I would rather have them than get worse quicker. I'm trying my best to not let this MS get the best of me.

But I do need to hear from other people that have not taken CRAB meds to see just how scarry this is for me. It makes me feel a little safer knowing that others have not taken the meds and are still doing okay. Understand that I'm going to start back as soon as I can afford it. Thanks for your answer.

 
Old 07-18-2005, 09:44 AM   #4
Member
(female)
 
Join Date: Feb 2005
Posts: 88
Dawn36 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Wobbley, if you really want informed, objection opinions, why exclude those who are on the meds? Seems like you just want to hear a lot of people not now on meds tell you it's ok, but of course, that would be very biased since you're only hearing from one side.

Cane lady says she's never had that many relapses, so she wouldn't be able to tell easily whether a medication was "working." I think it's nuts to think that way. I mean, I don't know for sure whether it's working either (i have mild MS also), but do you really want to take that kind of gamble with your own health? What if you take the gamble, and 10 years from now your'e 10x worse; you might regret not taking the meds a decade earlier, but it'll be too late.

And by the way, there are no flu like side effects from Copaxone, just the usual injection site soreness.

 
Old 07-18-2005, 10:32 AM   #5
Member
(female)
 
Join Date: Jun 2005
Posts: 73
fancycanelady HB User
Re: Please, I need to hear from some people not taking CRAB meds

Wobbley,
Is the reason you're not taking the meds now because of expense due to not having insurance or does your insurance not cover these meds? If you don't have insurance, have you ever heard of the "Merck Medical Assistance Program?" I don't know if CRAB meds are Merck drugs or not, but you might consider looking into it.
As for you Dawn, I might be "nuts" , but I would think if I REALLY needed the meds, SOMEBODY would have said something in the last 30 years. I've had lots of neuros due to moving out of state and am due to see a new one soon. If he thinks it's imperative that I try one, I will. I know Copaxone doesn't have the flu-like stuff but am not too "nuts" about everyday injections. I'm leaning now towards Rebif. Also, I'm pretty sure that back in to the 70's these drugs didn't even exist.

 
Old 07-18-2005, 11:12 AM   #6
Member
(female)
 
Join Date: Feb 2005
Posts: 88
Dawn36 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Fancycane lady, i think in this day and age, when you read nearly every week of some doctor amputating the wrong leg, or leaving medical instruments inside someone before sewing up or a myriad of other physician oversights, that all of patients need to be our own doctors as well, doing the legwork and keeping up on the research so that we don't passively sit there and wait for someone else to tell us what to do. It's YOUR life, and MY life, not the doctor's, and all doctors today are overloaded with patients becus insurance companies are pressuring them to generate more and more billable hours. We all have to take responsibility for our own health and well-being.

 
Old 07-18-2005, 11:14 AM   #7
Member
(female)
 
Join Date: Feb 2005
Posts: 88
Dawn36 HB User
Re: Please, I need to hear from some people not taking CRAB meds

PS If as you say you'd had "lots of neuros" in past years due to moving, that makes it all the more likely any one doc is not going to have very good recall of your particular case, and he won't have the longevity with you to see how you've progressed over the years. All the more reason to take a pro-active approach.

 
Old 07-18-2005, 11:52 AM   #8
Member
(female)
 
Join Date: Jun 2005
Posts: 73
fancycanelady HB User
Re: Please, I need to hear from some people not taking CRAB meds

Yes Dawn, you have a point. I now live in a very small town and getting an appoitment with a neuro is akin to getting one with the President of the USA! They only come up from the big cities once a month and like you said, are pretty much booked solid squeezing in as many patients as they can to get more billable hours. It is very frustrating. I have done lots of research since this last relapse has taken hold and plan to have a long conversation with this new guy, whether he likes it or not! Thanks for your input. It really pays to have and share as many opinions as possible to make an informed decision. Take care.

 
Old 07-18-2005, 12:25 PM   #9
Member
(female)
 
Join Date: Feb 2005
Posts: 88
Dawn36 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Fancycanelady, i wish you the very best with your doc visit. Remember, you are paying for the office visit, so don't let yourself be rushed along...block the door if necessary!

Know that we are rooting for you. I may come across as rather blunt, but my heart goes out to each and every MS person here, knowing what they go through.

You're right, the ABC and R drugs didn't exist in the 70s or 80s, but i think whatever docs you saw were remiss in not recommending, or at least putting these drugs out there on the table for discussion with you sometime in the late 90s. I think the Nat'l MS Society's strong endorsement of any one of the 3 drugs FOR EVERY MS PATIENT, regardless of their particular condition, was a very strong statement to make, and goaded me and my physician to start me on Copaxone in 2000.

 
Old 07-18-2005, 02:04 PM   #10
Junior Member
(male)
 
Join Date: Apr 2005
Location: Ontario Canada
Posts: 38
outlaw56 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Wobbley , I am sorry tohear that the meds arenot covered for you. I Tirned 49 yesterday and suffer from Primary Progressive M.S. Although just diagnosed in 2004 my wife and I figure its at least 8 or 9 years that I have had this ##2*^&$ disease. I have never been on any of the CARB's and I do function quite well on a daily basis. No I cannot work and am on disability pension . I manage to keep active during the days . If you would like to know the meds that I do take you can let me know put" Wobbley" in the Tag line of the email, that way it will not get deleted. Email me at [ please read and follow the posting rules - no emails ] and I will respond. Try and have a good day and I hope its a pain free one for you.






[ Please read the posting rules which explain that offering or asking off board contact is not permitted. The boards are to be used for on board sharing, only. The email and private message features are turned off so that use of the message boards remain anonymous. The only contact you may make with members is to post on the board. ]

Last edited by moderator2; 07-18-2005 at 04:00 PM. Reason: please read and follow the posting rules - no emails

 
Old 07-18-2005, 05:04 PM   #11
Senior Member
(female)
 
Join Date: May 2005
Posts: 109
WOBBLEY HB User
Re: Please, I need to hear from some people not taking CRAB meds

Quote:
Originally Posted by Dawn36
Wobbley, if you really want informed, objection opinions, why exclude those who are on the meds? Seems like you just want to hear a lot of people not now on meds tell you it's ok, but of course, that would be very biased since you're only hearing from one side.

Cane lady says she's never had that many relapses, so she wouldn't be able to tell easily whether a medication was "working." I think it's nuts to think that way. I mean, I don't know for sure whether it's working either (i have mild MS also), but do you really want to take that kind of gamble with your own health? What if you take the gamble, and 10 years from now your'e 10x worse; you might regret not taking the meds a decade earlier, but it'll be too late.

And by the way, there are no flu like side effects from Copaxone, just the usual injection site soreness.

I know that it is best to take your CRAB meds every week. The reason I ask for the people who didn't take any of the CRAB meds to answer was because I wanted to know how many people with MS did not take the shots every week and how they were doing. I know that there are a lot of people who can not afford the shots and was just wondering how they were?

 
Old 07-18-2005, 05:40 PM   #12
Member
(female)
 
Join Date: Jun 2005
Posts: 94
marion06095 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Didn't I hear that if you can't afford the drugs, they'll give them to you free?

 
Old 07-19-2005, 07:56 AM   #13
Senior Veteran
(female)
 
Join Date: Jul 2004
Posts: 607
sunshine149 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Hi Wobbley,
I am 31 years old and have had MS for over 8 years. I am NOT taking any of the CRABs. Contrary to many of the posts, CRABs are NOT for every MS patient, regardless of what the MS Society proclaims. Someone here posted on this thread, why would you gamble by not taking these meds, and I think it's important to remember that it is also a gamble to take them....

I also have Type I diabetes and there is NO data on how these medications effect diabetes even though there are an alarming number of Type I diabetics whom develop MS. Type I is also known as juvenile diabetes.

As of right now, I have a mild case of MS. I have done many to things to change my diet and lifestyle, with good success.

If you want remain on one of these medications, there are programs out there to explore. If you do not, there ARE things besides CRABs, believe me...

Best of luck to you Wobbly, I'll be thinking about you during this process.

 
Old 07-19-2005, 12:44 PM   #14
Senior Member
(female)
 
Join Date: May 2005
Posts: 170
Sharon Grace HB User
Re: Please, I need to hear from some people not taking CRAB meds

Hi Wobbley! I also take Rebif (eight months now). I am sorry you are going through a rough patch right now. I have trouble paying for my health insurance and have considered other options. Anyway, I only want to suggest that you contact Pfizer/Serono the manufacturer of Rebif. They may have a program for which you qualify to receive your Rebif until you get on your feet again. The toll free number for the MS Lifelines program at the drug co. is 1-877-447-3243. Please contact them to see if they can help you. Let me know how it goes and best of luck. Take care - Sharon Grace

 
Old 07-20-2005, 09:39 AM   #15
Newbie
(female)
 
Join Date: May 2005
Location: Florida
Posts: 7
Okaasan3 HB User
Re: Please, I need to hear from some people not taking CRAB meds

Wobbely,
Can your Dr. help you find a trial that you would be able to participate in?
Many of the available Med's have trials still going on but testing things like dosage, or being the control part of a trial. I think most trials give you free trial medicine and Dr. visits. There must be some help available to keep you on the meds if they were working for you!

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
High tolerance to Pain meds. HELP PLEASE!!! nochange Chronic Pain 17 02-26-2010 12:11 PM
New to Board, New to PM and Long Lasting Pain Meds - Fentanyl New To CP Pain Management 64 06-19-2009 10:44 PM
Need to lose more pounds by end of October - Help please! malayalalaki Weight Loss 1 10-20-2008 06:55 PM
Help/Advice neededASAP -Fentanyl detox, pain pat. abused meds will need meds in futre Confused089 Abuse Support 34 07-06-2008 05:33 PM
advice please about oxycontin withdrawal stacykgb20 Addiction & Recovery 11 11-24-2005 03:03 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



MSJayhawk (999), MSNik (526), Snoopy61 (58), J-one (13), Whimpurr (13), shahila (12), JodiH (11), MS22 (11), KingBaxter (10), LasVegasgirl (8)

Site Wide Totals

teteri66 (1180), MSJayhawk (1005), Apollo123 (906), Titchou (850), janewhite1 (823), Gabriel (759), ladybud (755), midwest1 (669), sammy64 (668), BlueSkies14 (607)



All times are GMT -7. The time now is 09:19 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!