Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 He - I too am on Rebif. I'm not surprised that you are feeling like crap! I've only been taking the shots for a couple months and I'm still waiting to be done with the side effects. I hear that if you take Tylenol or Ibuprophen a while before you take the shot, along with doing the shot before bedtime, that is the best way to avoid most of the effects. Well, I have to admit...it does work about half the time. Let me know if you get a weird smell in your nose the next day. That often happens when I take my shots. Blah!!! Blessed be... http://mscopgirl.blogspot.com http://360.yahoo.com/vallee45 -- Re: Newbie -- Hey Sharon - Thanks for asking how things are going.Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif???> > Hi All,> > I just joined last night, I need other people who know what I'm going through.> > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle!> > Thanks for having me !> > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2006 Report Share Posted May 6, 2006 - Sounds like you're doing okay so far. It's been a little over 2 months for me now and the side effects are still there, including the weird smell. Sometimes it smells like a dead animal or something. Yeah, the Ibuprofen doesn't seem to work for me either. I was just taking a double dose of Tylenol on shot nights. About 45 mins. Before injecting. Then, I was told to be careful with that, cause Tylenol is bad for the liver. But, to tell you the truth, it was the one thing that was helping the Side effects. Now, I just switch from Tylenol and Ibuprofen. I have a hard time sleeping at night, so sometimes I will also take an over the counter sleep aid. The injection sites on the legs are the ones that become bruised and sore one me. I have found that the hips and the tummy are the only areas that don't get sore. I hope that this treatment works for you. I'm told that after awhile, it's not so bad. Guess it's time to exercise patience. God bless... http://mscopgirl.blogspot.com http://360.yahoo.com/vallee45 -- Re: Re: Newbie -- Hey Val, No weird smell yet Still feeling alittle stiff this morning, but better. I've been taking IBprofin every 4 hours, but not sure it helps much. They started me on a 1/4 of a dose, then I'll work up to a whole dose- can't imagine taking the whole dose right away! They said that by 2 months the side effects would be completely gone- so I'm hoping They did give me alot of tips with the shots- it hardly hurt at all. But later the site is bruised and very sore. I haven't done much research on Rebif. so I was surprised when he said that is what he wanted me on. So I'll have to check out some info on it. Have you been back for you regular appointment yet? Glad to hear your blood pressure is better! I love your cartoon at the bottom!!! Take care, Re: Newbie -- Hey Sharon - Thanks for asking how things are going.Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif???> > Hi All,> > I just joined last night, I need other people who know what I'm going through.> > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle!> > Thanks for having me !> > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 , I have not had any progression of symptoms since I started Rebif. I am having a MRI this summer and will be curious to see if I have any more lesions. I was on Avonex for a year and my lesions doubled. My symptoms are mild and I am very blessed. I will keep doing those darn shots until something better comes along. Hope those muscle aches get better. Connie From: MSersLife [mailto:MSersLife ] On Behalf Of Sent: Tuesday, May 09, 2006 2:28 PM To: MSersLife Subject: [Norton AntiSpam] Re: Re: Re: Newbie -- Hi Connie, Thanks for the tips, I'm hoping it gets better. My main side effect was bad muscle aches- felt like I got beat up really bad! I did have a chills/sweats from a low grade fever and a slight headache. Feeling better today, but I have another shot tomorrow! How has your MS been since you started on Rebif? Take care, Re: Newbie -- Hey Sharon - Thanks for asking how things are going. Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif??? > > Hi All, > > I just joined last night, I need other people who know what I'm going through. > > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle! > > Thanks for having me ! > > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > " One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you. " V.R. , Palmer, Alaska, where Cabbages grow huge > > > > > --------------------------------- > > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2006 Report Share Posted May 7, 2006 Hi : Good insurance is a wonderful thing! I lost mine for a few years but then some changes were made and I was able to get insurance again at a price I can afford. I've had Medicare for several years but it doesn't pay enough and I was very reluctant to rack up medical bills--so I'm very thankful for having insurance again. I'm not on any treatment. As I said I stopped Avonex on my own. My neuro was not happy with me at all. Now I've been able to go back to my first wonderful neurologist. He wants to get some testing done. After that he said we'll "rethink" my decision to stop treatment. My MS was stabilized on Avonex. Now it's not. My problems include nocturnal leg spasms, bladder spasms, tremors, jerking in my hands and more brain fog. Thanks for asking--I do appreciate it. We'll all in this together and we need to support each other! Sharon wrote: Hi Sharon, Thanks for the tips! We do have good insurance, I just wanted to pay no money So are you on any treatment now? How is your MS? My biggest fear wasn't just having an attack, but brain shrinkage, in my 1st MRI, which was take at my 1st symptom, I already had some shrinkage- you could clearly see it on the MRI- scary! Take care, Re: Re: Newbie -- : I'm so sorry you didn't get into the trial. I'm assuming you have insurance then to cover the cost of Rebif? I imagine it's pretty expensive. I was on Avonex and I know it was a pricey item for my insurance company. After I lost my insurance Biogen sent me the Avonex every month at no cost. Isn't that cool? They would have continued providing it at no cost but I just got burned out on doing it. Lame excuse, huh? With Avonex it is deep injection. That really doesn't hurt like a person would expect. I know you aren't on Avonex but since Rebif is also an interferon maybe these hints will help you, too. Here's my Avonex Tips: (smiling) Drink a lot of water the day before shot and the day after (if you are well hydrated the injection will be easier and the bad stuff will flush out of your body faster) Eat a good, nutritious meal on shot day Take Tylenol or whatever works for you an hour before shot I always did better if I did my shot in the evening so I could sleep through the worst of the side effects Most importantly give yourself a treat after your shot. I always had some Starbucks Coffee Ice Cream. Sharon wrote: Hey Sharon - Thanks for asking how things are going.Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif???> > Hi All,> > I just joined last night, I need other people who know what I'm going through.> > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle!> > Thanks for having me !> > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Hey Val, No weird smell yet Still feeling alittle stiff this morning, but better. I've been taking IBprofin every 4 hours, but not sure it helps much. They started me on a 1/4 of a dose, then I'll work up to a whole dose- can't imagine taking the whole dose right away! They said that by 2 months the side effects would be completely gone- so I'm hoping They did give me alot of tips with the shots- it hardly hurt at all. But later the site is bruised and very sore. I haven't done much research on Rebif. so I was surprised when he said that is what he wanted me on. So I'll have to check out some info on it. Have you been back for you regular appointment yet? Glad to hear your blood pressure is better! I love your cartoon at the bottom!!! Take care, Re: Newbie -- Hey Sharon - Thanks for asking how things are going.Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif???> > Hi All,> > I just joined last night, I need other people who know what I'm going through.> > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle!> > Thanks for having me !> > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Hey Sharon, Some Neurologists (or doctors) can be a pain in the butt! Glad you're able to go back to a doctor that works well for you! I hope you're able to get you MS stablized one way or another. I have more senory problems than anything else. Numbness, pins and needles, fatigue, foggy vision and burning sensation. I can't believe what a wide range of symptoms MS has. Hope you're testing goes well keep us posted Re: Re: Newbie -- : I'm so sorry you didn't get into the trial. I'm assuming you have insurance then to cover the cost of Rebif? I imagine it's pretty expensive. I was on Avonex and I know it was a pricey item for my insurance company. After I lost my insurance Biogen sent me the Avonex every month at no cost. Isn't that cool? They would have continued providing it at no cost but I just got burned out on doing it. Lame excuse, huh? With Avonex it is deep injection. That really doesn't hurt like a person would expect. I know you aren't on Avonex but since Rebif is also an interferon maybe these hints will help you, too. Here's my Avonex Tips: (smiling) Drink a lot of water the day before shot and the day after (if you are well hydrated the injection will be easier and the bad stuff will flush out of your body faster) Eat a good, nutritious meal on shot day Take Tylenol or whatever works for you an hour before shot I always did better if I did my shot in the evening so I could sleep through the worst of the side effects Most importantly give yourself a treat after your shot. I always had some Starbucks Coffee Ice Cream. Sharon wrote: Hey Sharon - Thanks for asking how things are going.Well, today was the day- but it didn't go as planned. I didn't get into the clinical trial- there are alot of little things that had to be done and I didn't qualify. So I started on regular therapy, he thought Rebif would be the best for me. I was relieved to take 3 shots a week instead of 8! I took my first shot today, feel like crap right now. The shot itself wasn't bad (autoinjected by myself in my stomach). Wondering if anyone else does Rebif???> > Hi All,> > I just joined last night, I need other people who know what I'm going through.> > My name is , I have a hubby and 2 teens and a 1 year old foster child. > > This is my story... about 3 years ago I had my first symptom, I was 34. I then had several symptoms and went to my doctor, then several doctors. My only test that came back postive was my MRI, which I had 3 lesions. Well, I was unable to get diagnosed with that, according to these doctors. So I gave up - too many medical bills (my daughter had just had cancer the year before- she is in remission now) so I went on living, putting MS and my symptoms 'out of my head' and I went on a low fat diet and tried to stay healthy. > > That brings me to now. I went to a conference on MS. The doctor said that it is very important to get on treatment as soon as possible. So I made an appointment with him, had another MRI, which showed 2 more lesions- so now I have that 'diagnosis'. > > Now, I wanted to get treatment started, but still finanically strapped. The doctor is 250 miles away (round trip) and we had an old van. So first we went and bought something more dependable. Next I decided on a clinical trial, because it is free for 3 years. It is a trial where I will get either Avonex, Copaxone, or both. So I will being getting some drug. The doctor said that he will probably know which one, based on side effects. So that means I will be giving myself 8 shots a week. That is alittle hard for me to think about! I start on May 5th. > > I'm wondering how everyone else has dealt with injections? I will be doing them on my own, my husband would pass out if he saw a needle!> > Thanks for having me !> > > > > > > > > > > > > Sharon (MSersLife creator/owner) > > "One minute it's a giant cabbage and the next, ka-boom! You've got cole slaw all over you." V.R. , Palmer, Alaska, where Cabbages grow huge> > > > > ---------------------------------> > How low will we go? Check out Yahoo! Messenger's low PC-to-Phone call rates. > > > > Quote Link to comment Share on other sites More sharing options...
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