Hi, I just got told I had ms 5 weeks ago, numbness in my right arm and leg, burning in my joints, tingley and my right arm and hand feel cold all the time, migraine headaches, and I had an MRI done that showed a tiny spec and a lesion on my brain stem. I'm 31 and have 3 kids and a very supportive husband. I didnt flunk my office exam test(reflexes good, no muscle loss,20/20 vision, walked good, passed vibration test etc.) so therefore based on the criteria for diagnosing MS they couldnt say yes for sure I have it but said I needed to start therapy. I was recomended Tysabri and Avonex together. I was supposed to start the same week it got taken off the market. So I took my first shot of Avonex last Sunday. 4 hours to the minute after the injection, I got hit by a semi truck loaded with a ton of bricks! I thought I was dying. It was the worst flu I had ever had. I would rather give birth to triplets than go through that 24 hours of torture again, and I'm suposed to do this every week for the rest of my life? Forget that! So I want to try some alternative medicine without the torturous side effects and I stumbled upon Prokarin which is FDA approved. Its a compound that absorbs through your skin and into your blood streem. So far It sounds good and i'm going to talk to a pharmacist this week that mixes it. Anyone know more about it , or who has tried it PLEASE give me some feedback. GLTA
Last edited by Moon Rising; 03-09-2005 at 10:01 PM.
Hi, sorry to hear about your recent dx of ms. I was just dxed 3 weeks ago and my neuro is going to start me on copaxone because it does not have the bad side effects of the other disease modifying drugs such as rebif and avonex, the only downside is that with copaxone you need to inject yourself daily, but I figure that is a small price to pay compared to some of the side effects I have researched on the DMD's. OF course each person is different and reacts differently to a medication, but for me Copaxone is the best route to treat the disease. I have not heard of the other med you mentioned that is a compound you rub into the skin so I cant help you there. What was the reasoning fro going with Avonex, was it what your doctor recomended? Did you get inof on any of the other DMD's? I have also heard along with the flu like symptoms of the beta interfuron drugs such as avonex, they have to monitor yourkindey function and that over time your body builds up antibodies that reduces the effects of interferons, that is another reason why I chose copaxone.
Regardless of your choice of treatment, I wish you the best of luck, I know I was and still am pretty devistated when I ws told that i have ms, I have so many questions that are still unanswered and had a hoffible experience with a spinal tap, add to this that the vison in both my eyes is only at 50% normal and i get terrible headaches, it is a very scary time indeed. I hope you get the answers you need and want to let you know that you have my support.
Terry
you can try an other interferion the side afects ONLY last about 3 to 6 months,i think avonex is weekly you could try a more moderate 1 like rebif,just a thaught,im on interferion and it was bad for the first 3 or 4 months but a parasetimal helps noend sorry abou the spelling of that lol ,
all the best ,hope that helps a bit
sorry never heard of that prokarin stuff unless its very new
Hi,
it seems I have a similar situation re the "unsure of the MS diagnosis", I will be getting 1000mg IV Solumedrol x 5 days for symptoms you describe that have surfaced for the past two weeks. Anyway, I would like to know more about the Prokarin Compound since I am intimidated by the side effects of the current Meds available. I'll check with a local Alternative Medicine physician about your compound too.
moon rising, did u just take one shot of avonex and stop? did u have high fever? did it last the full 24hrs? did u take it at night? if u dont mind me asking, thanks im to start avonex in the next 2 wks
thanks
Elaine DeLack is the Nurses name. She was on the Montell Williams show, and he was supportive of DeLack's efforts to bring her compound treatment to the market. People call her the Erin Brokovich of Multiple Sclerosis. She has had MS since 1984. Do your DD and find out more I cant tell you more due to Policies. I'll know more tomorrow when I talk to a Pharmasist that mixes it. Good luck to all.
Hi Moon Rising,
I know about reactions that some people get from these meds, both firsthand and thru others in my support group. I had a terrible reaction to Betaseron and had to quit after just a few doses. I am taking Avovex, and reactions have not been a problem. Biogen says that side effects should diminish. But if they are truly inlolerable or close to it, its better to try something else.
From what I know Prokarin (or Procarin as I know it) is a questionable treatment at best and may even border on being a scam. It may not be harmful but it has never been shown scientifically to do anything for MS. I would check this out with your doctor.
- Roy
thnkpos, I hope you have better luck than me. Four hours to the minute after the injection(which was a piece of cake, Tottally relax and you just feel a tiny poke.) I started with the chills, Freezing and shaking. I went to bed to get warmed up and I couldnt stop shaking, I had to breath really hard, couldnt get my breath. Then the fever of 102.8 and the body aches that almost put me in coma and I could barly get up to go the bathroom. Then I was hot and sweating. Through the whole ordeal I had a horrible migraine and I thought my head would explode. My husband gave me Excedrine PM to help knock me out, it did for small periods of time. My whole ordeal lasted about 20 hours before i could get out of bed. This whole week I felt really tired, and a couple days after my muscles were sore from being tensed up so much from the chills. It was horrible experience for me which I dont see my self doing every week. I hope your one of the 50% that can tolerate this drug. Me my hopes are high for Tysabri to come back within a year. For now its omega-3's, immunity pills, excercise, lots of water and maybe the Prokarin compound. I'll let ya all know what I find out tonight with my chat with the parmasist. Good Luck
Last edited by Moon Rising; 03-11-2005 at 07:20 AM.
H i Moon Rising
I was DX in Nov. with MS and my doc jus decided that i should go on Avonex. ( I had research all of them alot before this) I thought that I could prepare myself for this by reading about it But after I have read your insight i am not sure. Did you take any ibprophen before or anything like that and what time of the day and what day did you take it. I hope that you dont mind me asking all these questions to you but i am really scared about the fact that i will be giving myself a shot that will give me the flu but then i also keep thinking that i dont want to go back to hospital and be put on steriod treatment either so i guess either way that we go its not going to be good huh. that is why we all have each other to talk with. Doctors act like they know what you are going though but they dont. I am not sure about all of the alternative Meds but that is my own personal thought I am in Nursing school and i have talk to my instructors about it and also what i have learned through school but if that is what you want more power to you let me know how it works cause maybe after i take my shot i will be right with you.
Good Luck and Take Care
Angie
Just to let everyone know, I'm not a Paris Hilton, i'm not a whimp. I grew up with 3 brothers 2 older and 1 younger, I have a high tollerance for pain, had three kids with no drugs. I'm 5 ft. 6 in. tall, 140 lbs, 31 years old, i'm just the average woman. I think some of you might think I'm a whimp because I only gave Avonex only 1 try. Like I said, some people react to it very well and I just was'nt one of them, all I can say is give it a try, if It works for you ,stick with it. I'm just trying find the easiest way to controll my MS since I have to live with it for the rest of my life, I think this disease is a trial error disease, everyone has to keep trying to find the right treatment that is best for them, not the pharmasudical co., or neurologist. If you dont like what your doing ask them to switch you to something else and give it a shot. I think we all should try to find the most comfortable, and tollerable treatment for us thats all, and I wish everyone the best till we find a find a cure for this. I think we are very close and I hope to see it my life time. Take care all
Hi Moon Rising,
I have one other thought about Avonex reactions. What some people have done is start off with a quarter dose and gradually work up to the full amount. Doing it that way your body's reaction to the interferon would be minimized and given a chance to adjust to the medication.
Just thought I'd mention. All the best on whatever you decide.
- Roy
That makes a lot of sence to me but never knew you could do that. Would you do that for a month then go to half the next month ,then 3/4 the next month till you reach the full dose??? I dont think i have a very supportive neurologist. I think shes told to give her patients the ABC drugs so she gets a kickback if you know what I mean. She's not for alternative drugs, which not many neurologists are, because what do they get out of it?? I'm not dissing Neuro's but just making a point. We all care more about each other here on this chat board then our Neuro's, at least in my case. Mine, I wouldn't call my best friend sorta speak. I learn more from reading what you all have to say than what I've learned from Dr's. Just my opinion, thats all.
Thanks for the tip Roy, I think I will try that Sunday to get rid of that Avonex in my fridge, It's invading my diet coke space, and I could put 4 more diet cokes in that Avonex box space, he he , thanks again.
--Moon
That makes a lot of sence to me but never knew you could do that. Would you do that for a month then go to half the next month ,then 3/4 the next month till you reach the full dose??? ...
--Moon
Hi Moon Rising,
I think you have to play it by ear. If you have no problems with 1/4 dose then go to half. If have some reactions then stay with the 1/4 dose until your become reaction-free or nearly so. Do this until you reach the full dose.
You should discuss this with your neuro. In fact, some may even recommend doing this.
Hope this helps.
- Roy
You are likely to read or hear different comments about Prokarin. Some people do very well on it some get 1 or 2 symptoms relieved and for some, the drug doesn't do anything. The latest numbers show that about 1/3 get multiple
symptom relief, 1/3 fall in the middle category and 1/3 receive no benefit. There are virtually no side effects at all, it is totally painless to apply the patch
and the worst thing that can happen is that you receive no benefit. In most cases, you will know within a month or so if you are going to get any benefit,
Generally speaking, MS patients who suffer a lot from fatigue and are affected a lot by the heat and humidity, benefit the most.
Prokarin, contrary to what you may have read, is not FDA approved for MS. There are only 5 drugs at the moment come under this category, with Avonex
being one of them. It seems that you want nothing more to do with Avonex after your terrible reaction to it. Prokarin has had one double-blind, placebo
controlled clinical trial done on it to study its effect on fatigue. The trial was published in The MS Journal (Feb 2002 I believe) and editor stated the results
were promising and more studies were required. The unfortunate problem, however, is the company who produced the drug, simply doesn't have anywhere
near the financial resources to conduct the trials required for FDA approval.
And you will also read comments by some people who label Prokarin as a "quack" medicine. I usually suggest that these people write the editor of The
MS Journal at the Unviversity of Pennsylvania and call him a quack! He is the person who read the trial data and authorized it to be published in his Journal.
Of course the people who make these degrogatory comments about Prokarin would never do this for fear of litigation against them.
yes , i agree. I was told by the pharmisist that mixes the prokarin compound that I would not benifit from it if i was not heat sensitive. He said only people that are heat sensitive would benifit from it. I am not, so he said it would be a waste of time and money for me.
The Avonex, I believe I will stick with it. I took 1/2 the dose this Sunday with 500mg of Naprosyn 1 hour before my shot and every 6 hours as needed, and I did awesome. I took the shot at 7:00p.m. and went to bed at 10:00p.m. I slept well, no headache ,no fever, no chills. Just the body aches and tired. I'll stick with the 1/2 dose for a couple of months to get my system used it ,then i'll try 3/4 dose and work my way up to the full dose. I get trashed off of 2 beers, I'm very sensitive to alcohol, 1 rum and coke and I'm drunk. I think thats why I reacted to the avonex so bad. I'm the same way with medicine. I took 1 500mg vicodin once and got really sick. I just think i'm a light weight when it comes to any drugs of any kind for me.
scampergirl, thanks for the reply............Moon
Last edited by Moon Rising; 03-15-2005 at 03:13 PM.
Edgewood,
Good for you! I hope you do benifit from it. I would considering doing some cleanses to get rid of the all the bad crap in the copaxone that you have been puting in your body for 9 years. I did research Prokarin when I was dixed in March of 2005. I'm not heat sensitive so I dont think I would benifit from it. There is a pharmasist here in my town that has met and talked with her numerous times. He is all for her. I shouldnt say this but he told me all these crab drugs(Avonex, rebif, copaxone, etc.) are bad for you. That MS is such a hard disease and everyone is different and they cant prove that these shots work or not and that they can cause more damage in the long run
(liver damage, heart disease, depression, constipation, etc.) and that I should really research diets. He said diet is sooooo important. He told me to call up Elaine and gave me her # and a video tape of her to watch. I did watch the tape but never called her. He mixes the compound for a few people with MS, but he told me the people that are heat sensitive benifit from it the most.
I did Avonex for 6 months. I had rough time at first, but then after about 3 and 1/2 months I switched to the vials that you mix yourself instead of the pre-filled and I had no flu symptoms. I did itch like crazy though. Something told me way back in my little sub-concious mind that this did'nt feel right, I didn't feel comfortable doing it anymore, and one day(3 weeks ago) I looked at my husband and said " I'm not taking the shot tonight." He was comfortable with it too, he agreed and said " Thats fine dear. Whatever makes you comfortable." That was that. I feel great, I have been eating better and have been taking vitamins and supplements. I do take one prescription drug. Lunesta 3mg, I sleep like a rock and feel like a million bucks when I wake up. I lived on these boards when I first got dixed(Which is PROBABLE MS). I learned alot listening to people. Everyone is different, and MS is a difficult disease to understand. I come by now and then, but dont post much. I'm staying away from Drs for a while. I dont go to a MS specialist anymore. I told my family Dr. (which is the only one I want), that I quit the Avonex, the provigil, the neurontin, the neproxin. She is fine with that and we are just going to do blood work every 6 months to make sure i'm staying in my normal range. She said I'm healthy becides my right arm tingling and being cold all the time. I've been tested for everything under the sun and I dont have squat except Probable Ms of course. She recomended a Lumbar puncture and I siad, no thanks i'm done being probed , I'm going to fly solo awhile and that was that, and thats where I stand now. Sorry so long, i'll shut up now, except for one thing. Research Sun Gazing. It's where you look at the sun right before sunrise and right before sunset. Supposed to let a lot of vitamins in through your eyes. Interesting. Take care and good luck with the Prokarin, can't hurt to try it.
----Moon
Moon rising... I was reading your description of the bad side effect you had from Avonex and my brother experienced the same thing. He too only did one dose and then his neurologist switched him to Copaxone. He had already been on Betaseron for about 7 years but built up antibodies, so had to switch. But again, he did fine on Betaseron all those years, and now does fine on Copaxone. You are not a wimp for only trying it once, no one should have to endure side effects like that when there are other options out there. My brother began shaking uncontrollably and said he was freezing when just a few minutes before he was sweating and couldn't cool off. We ended up calling 911 because we didn't know what was happening. They said his blood sugar was very low and the hospital thought he may have injected into a vein? I don't know how true that is, I think it had more to do with intense flu like symptoms from the Avonex. Everyone is different, you just have to find what works for you. I am on Betaseron and have had no problems. But anyways... good luck to you!
Hi, I just got told I had ms 5 weeks ago, numbness in my right arm and leg, burning in my joints, tingley and my right arm and hand feel cold all the time, migraine headaches, and I had an MRI done that showed a tiny spec and a lesion on my brain stem. I'm 31 and have 3 kids and a very supportive husband. I didnt flunk my office exam test(reflexes good, no muscle loss,20/20 vision, walked good, passed vibration test etc.) so therefore based on the criteria for diagnosing MS they couldnt say yes for sure I have it but said I needed to start therapy. I was recomended Tysabri and Avonex together. I was supposed to start the same week it got taken off the market. So I took my first shot of Avonex last Sunday. 4 hours to the minute after the injection, I got hit by a semi truck loaded with a ton of bricks! I thought I was dying. It was the worst flu I had ever had. I would rather give birth to triplets than go through that 24 hours of torture again, and I'm suposed to do this every week for the rest of my life? Forget that! So I want to try some alternative medicine without the torturous side effects and I stumbled upon Prokarin which is FDA approved. Its a compound that absorbs through your skin and into your blood streem. So far It sounds good and i'm going to talk to a pharmacist this week that mixes it. Anyone know more about it , or who has tried it PLEASE give me some feedback. GLTA
Hi...Yes I tried Prokarin, had some relief, but only some.
I'll you why (VERY IMPORTANT)!
Anyone can e-mail me!
Anyone Tried Prokarin Compound? 
