Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Tammy, you've got to do what you feel you need to do...however, my 2 cents in this IS--when i stopped in late June, i would up in the hosp. on IV steroids for neurogenic bladder, had to have a catheter put in; had leg weakness and balance problems. Went right back on my copaxone. I could say to myself, well, I am right this moment having my third major flare-up in 11 months--this stuff isn't doing anything! But i am a believer that the disease progresses faster if we are off our injectibles. I'm on copaxone--that is every day! Yes, i get whelts too, it is a pain--but we are the fortunate ones that at least have meds to take! As far as insomnia, that can be from many things--mine is from perimenopause--i rub wild yam cream on my arms and chest 3 wks of the month, and it seems to be helping somewhat. Ambien is good for short term, but not for long term, it can be habit forming, and yes, you can need more of it to help you get to sleep. I do this kind of crazy thing when i can't sleep--i learned it in my MS yoga class. I tighten each muscle in my body, one at a time, and hold them for as long as i can, then slowly release. Then at the end, I tighten up my entire body, hold it, release. I do this about 4 or 5 times, and then i feel so relaxed and worn out it feels easier to slip off to sleep. Lately i have been reading alot, and that gets my eyes sleepy, and also just got an ipod and i listen to very relaxing, meditative music to help me sleep. So very good to see you posting again...Take care of yourself, and stay here with us--let us know how you are, ok? hugs and prayers, kate off medsTo: mserslife > I decided to stop taking my Rebif injections. They hurt, leave > bruises, and I'm just tired of taking the darn injections! I am > going to stay on the Neurontin for a while longer. I think I > see my neuro in March. Then I'll decide if I'm going to stop > everything except the Noritriptaline and of course the birth > control! LOL My insomnia is still horrible. I think I'm going > to try some Tylenol PM and get off the Ambien. It doesn't seem > to be working and can't afford to go see doc right now to get Rx > for something new. Just my 2 cents on my situation.> > Tammy, Tx> > PS Plus I haven't posted in a long time so thought this would > be a good one.> > > Join Killeen Barter at > http://finance.groups.yahoo.com/group/KilleenBarter/> Trade or Barter away those things you don't want anymore!> > > > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Are you feeling moody? I ask that because MSers are notorious for deciding to stop their meds. In fact it's become a joke in my family -- with me the butt of the joke. I was just thinking earlier today and stopping one of my meds. Honest! lolHow long have you been on Ambien? Is that one you can stop 'cold turkey'? If you decide to go off Neurontin you MUST wean off or else you run the risk of having a seizure. Hang in there!hugs)))Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford off meds I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Good luck with it all Tammy! BC is VERY VERY important if you're not planning future kiddies....lol x0x0x0 ShirleyTamatha P wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 over the past 2 months I have weaned myself from 1800mg down to 600mg. That is where I intend on staying until my neuro appt in March. Moody........O Lord yes. My current situation has left me more than moody and more than broke. I just need to see if the Rebif is really a help or waste of time and money and skin that isn't soar. I have only been clinically dx'd so there is a good chance my MS will never reappear. I am willing to take that chance to see if I really have it or if my attack in March was just side effects of combined meds and the lesions could well have been from my migraines.Sharon Marsden wrote: Are you feeling moody? I ask that because MSers are notorious for deciding to stop their meds. In fact it's become a joke in my family -- with me the butt of the joke. I was just thinking earlier today and stopping one of my meds. Honest! lolHow long have you been on Ambien? Is that one you can stop 'cold turkey'? If you decide to go off Neurontin you MUST wean off or else you run the risk of having a seizure. Hang in there!hugs)))Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford<!--[endif]--> off meds I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 I have had all the kids I plan on having!!! LOLShirley wrote: Good luck with it all Tammy! BC is VERY VERY important if you're not planning future kiddies....lol x0x0x0 ShirleyTamatha P <tamatha_tx> wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 I've heard Rebif can be difficult so I can't fault you there. I was on Avonex for nearly 5 years and was doing great. I did so good that I decided I didn't need it any longer and quit it in 2003. The past year I've really gone downhill. I just started on LDN recently and I'm sure it's making me feel better. I am giving it a trial period to see what I think and I've told my neuro if it there is evidence on MRI of further progression I'll quit LDN and go back on an approved therapy. But I don't know if I really will. We're all in this moody ole boat together. So grab a life preserver and hang on!Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford off meds I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Tamatha- I know how you feel about the Rebif. I took it for 9mos. and had a more negative time with it than positive. I stopped taking it for several months, then when I had this last relapse, I decided to try it again. Did pretty well with it until about 2 weeks ago. Then, the side effects started kicking in. I've decided to go ahead and use up what's left of my supply, then see where I go from there. I've had a lot of bruising also. That's not so bad. It reminds me where NOT to inject the next time. And besides, I usually inject in sites that are not visible to others. I have a problem with insomnia also. I don't do well with Ambien. It's way too fast acting on me. Also, if you don't sleep on it, it can really make you do some really weird things. I take the Tylenol PM, now. It helps me sleep pretty well, especially on shot nights. I hope you do well. Believe me...I understand. Blessed be.... http://360.yahoo.com/vallee45 -- off meds I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 Tammy, Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again. Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why. I think this MS thing and meds is hard and it wears us down. Just don't do anything radical. Good wishes to you, Tamatha P wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2007 Report Share Posted January 3, 2007 the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy [f8thfulmom@...] wrote: Tammy, Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again. Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why. I think this MS thing and meds is hard and it wears us down. Just don't do anything radical. Good wishes to you, Tamatha P wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Tammy and Val, I also take Rebif. I have been on it for close to 2 years. The bruising stops after a while. The soreness at the injection site is helped by icing before injecting. A warm compress helps after. Tylenol with the shot allievates all the headache and chills for me. I was on Avonex for a year and my lesions doubled. With the Rebif, I have not had any new lesions. That makes all the negative aspects of the shots worthwhile. Unfortunately, I may be forming an allergy to Rebif and my neuro may need to switch me. Hang in there, Connie From: MSersLife [mailto:MSersLife ] On Behalf Of Valene Sent: Wednesday, January 03, 2007 7:01 PM To: MSersLife Subject: Re: off meds Tamatha- I know how you feel about the Rebif. I took it for 9mos. and had a more negative time with it than positive. I stopped taking it for several months, then when I had this last relapse, I decided to try it again. Did pretty well with it until about 2 weeks ago. Then, the side effects started kicking in. I've decided to go ahead and use up what's left of my supply, then see where I go from there. I've had a lot of bruising also. That's not so bad. It reminds me where NOT to inject the next time. And besides, I usually inject in sites that are not visible to others. I have a problem with insomnia also. I don't do well with Ambien. It's way too fast acting on me. Also, if you don't sleep on it, it can really make you do some really weird things. I take the Tylenol PM, now. It helps me sleep pretty well, especially on shot nights. I hope you do well. Believe me...I understand. Blessed be.... http://360.yahoo.com/vallee45 -- off meds I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance.groups.yahoo.com/group/KilleenBarter/ Trade or Barter away those things you don't want anymore! __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 I love roller coasters.... but I really could use some time off this one.... LOL |)onna P.S. And I'm betting that could too... lol Sharon Marsden wrote: <snip> > We're all in this moody ole boat together. So grab a life preserver and > hang on! > > Sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 And I take 60 mgs. of Baclofen, 800 mg. of Neurontin, 60 mgs. Cymbalta and 2 of the .5 clonazapam at bedtime. Then it starts all over again in the morning. No abc drugs for me either--instead I take LDN (low dose naltrexone). But I still have to take a bunch of baclofen and neurontin to keep the spasms, spasticity and Trigeminal Neuralgia at bay.Hang in there!Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy [f8thfulmomyahoo (DOT) com] wrote: Tammy, Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again. Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why. I think this MS thing and meds is hard and it wears us down. Just don't do anything radical. Good wishes to you, Tamatha P <tamatha_txyahoo (DOT) com> wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 I am very interested in LDN if I have ms.I did some research on it and it seems very promising.I think I remember reading you cant take pain medicine with it,but if it helps pain then Its good.lol.I dont think ill have the option of LDN if I have Devics. I think the main meds for that are Imuran,Rituxin,Celcept,and I forget the others.anything to slow this monster down.hugs,cassy [wobbletowalk@...] wrote: And I take 60 mgs. of Baclofen, 800 mg. of Neurontin, 60 mgs. Cymbalta and 2 of the .5 clonazapam at bedtime. Then it starts all over again in the morning. No abc drugs for me either--instead I take LDN (low dose naltrexone). But I still have to take a bunch of baclofen and neurontin to keep the spasms, spasticity and Trigeminal Neuralgia at bay. Hang in there! Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy [f8thfulmomyahoo (DOT) com] wrote: Tammy, Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again. Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why. I think this MS thing and meds is hard and it wears us down. Just don't do anything radical. Good wishes to you, Tamatha P <tamatha_txyahoo (DOT) com> wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 You are right. You can't take LDN with narcotic pain meds. I never thought I'd be able to go off the Hydrocodone but surprisingly I felt better without it. Narcotics don't help with nerve pain anyway but I always thought I needed the stuff for my back pain. Anyway I did feel better after I stopped the hydrocodone on August 15, 2006. I was taking quite a bit each day too. LDN has certainly made a difference in my nighttime leg pain. It was so severe that I used to dream about suicide and would wake up crying. I started Cymbalta and that took the pain down about 50%. Now with LDN I would say the pain is at 10% of what it was a year ago. I think that's amazing! I don't know if LDN helps Devics or not. But then LDN is not approved for anything. You have to find a doc willing to prescribe it for you. I know there's a list of doctors who are known to prescribe LDN. Someone has compiled it but I can't remember who. Maybe Akiba knows? It's a cheap med. Mine costs me under $20 a month including shipping. It has to be compounded by a compounding pharmacy and I order it from Florida. When do you see the doc again?Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy [f8thfulmom@ yahoo. com] wrote: Tammy, Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again. Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why. I think this MS thing and meds is hard and it wears us down. Just don't do anything radical. Good wishes to you, Tamatha P <tamatha_tx@ yahoo. com> wrote: I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation. Tammy, Tx PS Plus I haven't posted in a long time so thought this would be a good one. Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/ Trade or Barter away those things you don't want anymore! ____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 What's abc drugs? Sharon Marsden wrote: And I take 60 mgs. of Baclofen, 800 mg. of Neurontin, 60 mgs. Cymbalta and 2 of the .5 clonazapam at bedtime. Then it starts all over again in the morning. No abc drugs for me either--instead I take LDN (low dose naltrexone). But I still have to take a bunch of baclofen and neurontin to keep the spasms, spasticity and Trigeminal Neuralgia at bay.Hang in there!Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford<!--[endif]--> Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy[f8thfulmomyahoo (DOT) com] wrote:Tammy,Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again.Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why.I think this MS thing and meds is hard and it wears us down. Just don't do anything radical.Good wishes to you,Tamatha P <tamatha_txyahoo (DOT) com> wrote:I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation.Tammy, TxPS Plus I haven't posted in a long time so thought this would be a good one.Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/Trade or Barter away those things you don't want anymore!____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Avonex, Betaseron (or rebif), Copaxone! Just a guess, love, n Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy[f8thfulmomyahoo (DOT) com] wrote:Tammy,Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again.Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why.I think this MS thing and meds is hard and it wears us down. Just don't do anything radical.Good wishes to you,Tamatha P <tamatha_txyahoo (DOT) com> wrote:I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation.Tammy, TxPS Plus I haven't posted in a long time so thought this would be a good one.Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/Trade or Barter away those things you don't want anymore!____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 They C.R.A.B. drugs. Copaxone,Rebif,Avonex and Betaseron. Akiba --- Deao wrote: > What's abc drugs? > > > Sharon Marsden wrote: > And I take 60 mgs. of Baclofen, 800 mg. > of Neurontin, 60 mgs. Cymbalta and 2 of the .5 > clonazapam at bedtime. Then it starts all over > again in the morning. No abc drugs for me > either--instead I take LDN (low dose naltrexone). > > But I still have to take a bunch of baclofen and > neurontin to keep the spasms, spasticity and > Trigeminal Neuralgia at bay. > > Hang in there! > > Sharon > > If the government is big enough to give you > everything you want, it is big enough to take away > everything you have. - Gerald Ford > <!--[endif]--> > > Re: off meds > > the med thing does suck.I just took 2 baclofen,a > 600 mg. Neurontin,a zoloft,half a extra strength > vicodin,and i feel like im forgetting one.just for > bed.then it all starts over in the morning.no abc > drugs for me because no dx.I hate taking all these > meds,and they have side effects.but every single 1 > of them help my symptoms,and quality of life,and > thats the only thing that keeps me taking them.I > feel like im taking meds all day! But hey i figure > im sick and without them im sicker.and I have to be > the best i can be.everyday I have to get up and take > care of my girls,no matter how awful I feel.so why > suffer...hugs cassy > > [f8thfulmomyahoo (DOT) com] wrote: > Tammy, > Over the years I have gone through times when I was > just sick of taking my meds, especially when they > didn't seem to make a huge difference. But then over > time I start slowly up again. > Last year I went off of my betaseron because I just > couldn't stand the site injection problems and the > side effects for me were horrible. Then I went on > copaxone for a bit and I DID not like that. I > decided to go back to Betaseron and amazingly I have > not had any side effects this time. I don't know > why. > I think this MS thing and meds is hard and it wears > us down. Just don't do anything radical. > > Good wishes to you, > > > Tamatha P <tamatha_txyahoo (DOT) com> wrote: > I decided to stop taking my Rebif injections. They > hurt, leave bruises, and I'm just tired of taking > the darn injections! I am going to stay on the > Neurontin for a while longer. I think I see my neuro > in March. Then I'll decide if I'm going to stop > everything except the Noritriptaline and of course > the birth control! LOL My insomnia is still > horrible. I think I'm going to try some Tylenol PM > and get off the Ambien. It doesn't seem to be > working and can't afford to go see doc right now to > get Rx for something new. Just my 2 cents on my > situation. > > Tammy, Tx > > PS Plus I haven't posted in a long time so thought > this would be a good one. > > Join Killeen Barter at http://finance. groups.yahoo. > com/group/ KilleenBarter/ > > Trade or Barter away those things you don't want > anymore! > > > ____________ _________ _________ _________ _________ > __ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 This is what I thought. A=Avonex, B=Betaseron, C=Copaxone. Then I heard this... The "CRAB" Drugs. C=Copaxone, R=Rebif, A=Avonex, B=Betaseron. I could be wrong.... Valene -- Re: off meds Avonex, Betaseron (or rebif), Copaxone! Just a guess, love, n Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy[f8thfulmomyahoo (DOT) com] wrote:Tammy,Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again.Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why.I think this MS thing and meds is hard and it wears us down. Just don't do anything radical.Good wishes to you,Tamatha P <tamatha_txyahoo (DOT) com> wrote:I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation.Tammy, TxPS Plus I haven't posted in a long time so thought this would be a good one.Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/Trade or Barter away those things you don't want anymore!____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Nope Valene, you're right... Before Rebif was approved for use in the United States, we referred to the therapies as the ABC drugs.. (Avonex, Betaseron,Copaxone) After Rebif was approved a lot of people said ABCR drugs... that I think made it harder to remember, so someone came up with CRAB drugs.. but I know I started using the term almost immediately... CRAB is easier to remember than ABCR... but you're right on what CRAB now refers to. (Copaxone, Rebif, Avonex, Betaseron). |)onna Valene wrote: > > This is what I thought. A=Avonex, B=Betaseron, C=Copaxone. Then I heard > this... The " CRAB " Drugs. C=Copaxone, R=Rebif, A=Avonex, B=Betaseron. > > I could be wrong.... > Valene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 'ABC' drugs was the term before Rebif came along: Avonex, Betaseron, Copaxone. Now I've heard it 'CRAB' meaning Copaxone, Rebif, Avonex and Betaseron. I've also heard 'CRAB T' meaning the addition of Tysabri. Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy[f8thfulmomyahoo (DOT) com] wrote:Tammy,Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again.Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why.I think this MS thing and meds is hard and it wears us down. Just don't do anything radical.Good wishes to you,Tamatha P <tamatha_txyahoo (DOT) com> wrote:I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation.Tammy, TxPS Plus I haven't posted in a long time so thought this would be a good one.Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/Trade or Barter away those things you don't want anymore!____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Well...I don't know about y'all, but all these drugs we have to take, tends to make me a little CRAB-E!! Hope you are all having a great Friday!! -- Re: off meds 'ABC' drugs was the term before Rebif came along: Avonex, Betaseron, Copaxone. Now I've heard it 'CRAB' meaning Copaxone, Rebif, Avonex and Betaseron. I've also heard 'CRAB T' meaning the addition of Tysabri. Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford<!--[endif]--> Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and quality of life,and thats the only thing that keeps me taking them.I feel like im taking meds all day! But hey i figure im sick and without them im sicker.and I have to be the best i can be.everyday I have to get up and take care of my girls,no matter how awful I feel.so why suffer...hugs cassy[f8thfulmomyahoo (DOT) com] wrote:Tammy,Over the years I have gone through times when I was just sick of taking my meds, especially when they didn't seem to make a huge difference. But then over time I start slowly up again.Last year I went off of my betaseron because I just couldn't stand the site injection problems and the side effects for me were horrible. Then I went on copaxone for a bit and I DID not like that. I decided to go back to Betaseron and amazingly I have not had any side effects this time. I don't know why.I think this MS thing and meds is hard and it wears us down. Just don't do anything radical.Good wishes to you,Tamatha P <tamatha_txyahoo (DOT) com> wrote:I decided to stop taking my Rebif injections. They hurt, leave bruises, and I'm just tired of taking the darn injections! I am going to stay on the Neurontin for a while longer. I think I see my neuro in March. Then I'll decide if I'm going to stop everything except the Noritriptaline and of course the birth control! LOL My insomnia is still horrible. I think I'm going to try some Tylenol PM and get off the Ambien. It doesn't seem to be working and can't afford to go see doc right now to get Rx for something new. Just my 2 cents on my situation.Tammy, TxPS Plus I haven't posted in a long time so thought this would be a good one.Join Killeen Barter at http://finance. groups.yahoo. com/group/ KilleenBarter/Trade or Barter away those things you don't want anymore!____________ _________ _________ _________ _________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2007 Report Share Posted January 5, 2007 Hey sharon.wow that is amazing.im taking 2400 mg's of neurontin a day,and 60 mg. Of baclofen.the neurontin seemed to help at first,now I think im taking it for nothing.the baclofen has always helped,still not enough help,but some relief.I seen my doc today,my foot x ray came back normal.he thinks its whatevers wrong with me is causing it,and hes sending me to a podiatrist he said they may be able to recomend a good brace.hes also sending me to a neuro optomologist,and is treating my stomach with zantac.so far my bloodwork is ok.he was thinking an ulcer so im waiting for the h.pylori test result.he did say thow it was possible it is whatevers wrong with me.lol.if only I ever find out!it feels like spasms so who knows,only know it hurts like hell.got all my films today,to take to the ms specialist on the 16th.I guess this guy knows about devics,and my neuro says they can run the nmo test for devics,and all the works.yippy!do I see a spinal comn up?thanks for the info,ima ask about it after dx.hope your doin ok [wobbletowalk@...] wrote: You are right. You can't take LDN with narcotic pain meds. I never thought I'd be able to go off the Hydrocodone but surprisingly I felt better without it. Narcotics don't help with nerve pain anyway but I always thought I needed the stuff for my back pain. Anyway I did feel better after I stopped the hydrocodone on August 15, 2006. I was taking quite a bit each day too. LDN has certainly made a difference in my nighttime leg pain. It was so severe that I used to dream about suicide and would wake up crying. I started Cymbalta and that took the pain down about 50%. Now with LDN I would say the pain is at 10% of what it was a year ago. I think that's amazing! I don't know if LDN helps Devics or not. But then LDN is not approved for anything. You have to find a doc willing to prescribe it for you. I know there's a list of doctors who are known to prescribe LDN. Someone has compiled it but I can't remember who. Maybe Akiba knows? It's a cheap med. Mine costs me under $20 a month including shipping. It has to be compounded by a compounding pharmacy and I order it from Florida. When do you see the doc again? Sharon If the government is big enough to give you everything you want, it is big enough to take away everything you have. - Gerald Ford Re: off meds the med thing does suck.I just took 2 baclofen,a 600 mg. Neurontin,a zoloft,half a extra strength vicodin,and i feel like im forgetting one.just for bed.then it all starts over in the morning.no abc drugs for me because no dx.I hate taking all these meds,and they have side effects.but every single 1 of them help my symptoms,and.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 Good One Valene!!!! Oh and I definitely agree.. more than a little CRAB-E at times too! |)onna Valene wrote: > > Well...I don't know about y'all, but all these drugs we have to take, > tends to make me a little CRAB-E!! Quote Link to comment Share on other sites More sharing options...
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