This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

I hope you can help me with deciding which is the best medication. I am newly diagnosed with MS. It has been a long and difficult diagnosis due to the fact that I do not have typical MS symptoms, except for the optical neuritis. I had the first optical neuritis attack in July 2009 and the second one in January 2010. I have seen three neurologists in Dubai and one in Germany. After many tests they have concluded it is MS, the type remittance relapse. However, none of them would take a decision about the treatment. They all gave me options: Avonex, Betaferon, Rebif or copaxone (the last one is available only in Europe). HOwever, they have recommended either Avonex, either Betaferon on my own choice. I am not a doctor...so how can I decide? I would appreciate your input on this matter.

Thank you in advance,

Alexandra -- You have found a good site for information. I am sure that there is at least one person here on any and every MS drug. Most are willing to share their experiences, but no one will advise you on which one is best for you. You must do the research and find your choice with the aid of your physician.

My personal opinion after trying Betaseron, Avonex, and Copaxone and finding no improvement with them is to go without medication. I do not believe that MS is fundamentally an autoimmune disease; I think that an extremely low carb diet and exercise are more effective against MS.

When faced with this same decision, I decided on Avonex. The needle is bigger, but because it's an intramuscular injection, there are no injection site reactions. Many people experience injection site reactions with the subcutaneously injection Ifn-betas, Betaseron and Rebif. The literature for Betaseron describes this as "injection site tissue necrosis." Another advantage of Avonex over Betaseron is that it has a much lower tendency to elicit neutralizing antibodies. These are antibodies which make the medication ineffective and can actually worse MS progression if they stay persistent.

Here's a recent thread where the effect of neutralizing antibodies was discussed.
http://www.thisisms.com/ftopicp-94687.html#94687

I've been on Avonex for around 9½ years. The first year was very difficult with many side effects. However, many people find ibuprofen to help much more than Biogen's recommendation of using Tylenol. If you do decide to try Avonex, I would recommend that you time your shot so that you can take it easy the next day and not do too much.

In addition to the Ifn-betas, there has also been much discussion of supplements on the forums. My personal recommendations are for eliminating proinflammatory foods such as trans fat and reducing saturated fat and taking supplements such as omega-3 fatty acids in fish oil, green tea, r-lipoic acid, vitamin D3, curcumin from turmeric and magnesium citrate. Please read through the posts on the Natural Approach forum. http://www.thisisms.com/forum-27.html

Everyone's experience with MS is slightly different. For example, I went 8 years between my first and second attacks without any noticeable symptoms. I was diagnosed after my second attack and started using Avonex a few months later. I made no changes to my diet or lifestyle between my first and second attacks since I was undiagnosed and did not know that I had MS. I often wonder how the progression to my second attack might have been altered by consuming some of the above named supplements. However, these are not a substitute for any of the medications. They are often considered complementary to other treatments.

Lastly, there has been some exciting new research in the area of the impact of the vascular system on MS. You may want to read through some of the posts in the CCSVI forum. http://www.thisisms.com/forum-40.html

NHE

Thank you for your answers. I will consider Avonex then. NHE, does it matter how many lessions are when deciding for the medication?Specifically, if there are more lessions a higher dosage of interferon is required or it doesn't matter?

Thank you again for taking the time to answer me.

I did Avonex for over 10 years and it worked for me.

Avonex takes a while to be effective and I think that you do not get the full benefit for about 2 years. It also seems to be ineffective during major relapses BUT it becomes quite effective during periods of remission.

I did this posting here on how to MAXimize Avonex and other interferon beta drugs.

http://www.thisisms.com/ftopict-4186.html

After the first two years of Avonex I had no more attacks and my MRIs showd NO active lesions and no NEW lesions.

I was tested for neutralizing antibodies and the levels were very low.

I stopped taking it after 6 straight years of NO lesions or majpr attacks. I did have some symtoms "flair up" for short periods of time.

jackD

Based on your suggestions and the research I did, I chose Avonex and I got it two days ago for 3 months. The doctor is running some allergic tests now and I'll be starting it next week or in two weeks maximum. I noticed that the injections are preffiled, but not autoinjector. I am a bit scared of the injections and the side effects. Plus my doctor sais it is dangerous to do it myself, as I might touch a nerve. I read the technique on the side. How bad are the side effects?
I also started to take suppliments. I am taking 3 pills of cod liver oil per day (415mg) and some homeopathic treatment a doctor prescribed which until seems to work. If I find good results with it, i'll post the content here. Please let me know how bad are the side effects? Secondly, which is the best brand for cod liver oil and which is the quantity?
I decided for 3 pills of 415mg per day after reading Dr. Swank's book " Diet for MS" (per his recommendation there should be 4 per day).

Thank you again for taking the time to answer me.

From your experience, is there a difference between the brands? I am taking the cod liver oil from Puritan Prides. I haven't started the green tea extract as apearently it doesn't work with the homeopatic remedy. Can you tell me also magnesium citrate is it a pill or a solution?

thanks

Are you referring to this thread...
http://www.thisisms.com/ftopicp-70084.html#70084

Biogen should arrange for a nurse to train you on how to do your first injection. This will help you avoid some of the common mistakes and also help you avoid hitting a nerve. One important note is to keep your leg muscle relaxed and not to flex it when you have the needle inserted. I had my leg muscle spasm once all by itself with the needle in it and that was painful. However, that only occurred once in 9.5 years. You also don't want to move the syringe once the needle is in your leg, i.e., no twisting and no side-to-side movement, just straight in and straight out. This will help to minimize any soreness that may occur at the injection site.



The first shot or two can be pretty bad. Try to arrange your shot so that you can give yourself the day afterwards to take it easy and recuperate. I would recommend taking 400 mg of ibuprofen at the time of your shot and then another 400 mg every 4-6 hours after that as needed.



You might also want to look into omega-3 fish oil supplements. You'll get more omega-3 fatty acids without having to worry about getting too much vitamin A. I used to take cod liver oil but then switched over to the fish oil and get my vitamin D3 from a combined D3, calcium, magnesium, zinc supplement.

http://www.thisisms.com/ftopicp-78774.html#78774



No problem, I'm happy to share my experience in the hope that it's helpful.

NHE

Hi - I had an 'isolated incident' about 8 months ago, with optic neuritis - and I've been injecting with Avonex since. I have a severe needle phobia so it took me about 6 months to desensitise, but I'm injecting independently now. It's better (for me - others might be different) to inject at about 11am, because the side effects don't appear 'til evening -then I can sleep the effects off. I usually still feel a little 'out of it' the next morning. The side effects have lessened a lot over time, which has been a relief. Panadol helps and I also make sure I eat a good lunch and evening meal after the injection, because I've had some pretty bad stomach aches. Please let me know if I can help further......Smokey.

I am meeting someone from Biogen tomorrow as arranged by my doctor. I hope he will teach me how to do it properly.

I have an intolerance to histamine and Nurofen increases the histamines activity. Are the secondory effects tolerable only on Panadol?

I will be looking into the Fish Oil supplements. Does it matter from which type of fish is it coming? In Dubai I have seen the salmon oil fish with 1000mg omega3

thank you again for taking the time to answer me. I am newly diagnosed and quite struggling with what to do and with accepting the diagnostic

I've found that Panadol has worked well - once I sorted out the stomach ache from Avonex! You mightn't have stomach aches. It's not easy accepting the diagnosis, and I struggled with this too. I've been doing fine with Avonex, and I'm very interested in CCSVI...this website has been wonderful for finding out about most things MS related. The Facebook CCSVI site is also excellent.

Hi everyone,

I just had my first two Avonex injections. First week half of injection, second one three quarters under panadol both. First week no side effects, today I am starting to feel the flu like symptoms, acceptable under panadol. I have started the suppliments too, but I do have some questions related to this:
1. is it better to take the oil or the capsules (fish oil)?
2. I found on the site different dosages of vit d. which is the optimum one?
3. vitamines, is it better to take with iron or without?
4. mega extract green tea: there is a discussion on the site pro and contra. is it good to take it or not?
5. noni juice - is anyone taking it? it is said to reduce the side effects of interferon.

And finally, how many suppliments do you take in a day? they seem so many in the links posted. It looks to me like all day I have to swallow pills.
thanks everyone for your help

Hi Alexandra,
I'll try to answer a couple of your questions.



Fish oil tends to be quite pungent. I take the capsules. I know that manufactures offer flavored fish oils, but these always give me an unpleasant aftertaste even when taking the capsules.



Probably the best thing to do is to get your levels of 25-hydroxy D3 tested and then go from there. Once you find out your body's level before starting supplementation, you can then make a better decision as to what dosage regimen will be needed to get you back up to normal levels, i.e., 150 nmol/L.



There has been much discussion on the site about the benefits of green tea. For myself, I have chosen to drink about 3-5 cups of green tea per day. I usually drink one cup of caffeinated green tea early in the day while the rest is decaffeinated.



You'll have to make a decision, usually through trial and error, as to which supplements give you the most benefit. One can usually not take all of the "recommended" supplements due to expense or complexity, but if you figure out what helps you the most, then you can focus on those combined with some healthy anti-inflammatory dietary changes. For example, I notice a big difference with my 6g/day of fish oil so I focus on that and take a few other things like green tea, whole turmeric, a combined Ca, Mg, Zn and D3 supplement.

NHE

Thank you NHE. I will follow your advice and test my D3 level and I will go and find higher dosage of omega3 fish oil capsules.
I wrote yeasterday too early about the easy side effects. It is surprising how the body fully simulates a bad flu in just a few hours. It gave me a night without sleep, sheevering, temperature,....even under panadol. Definetely panadol helps so I can't imagine how it would be without...and next week full injection. Not easy to accept this life..I hope the medicine works at least

I recommend trying ibuprofen instead of acetaminophen. Many people have found that it's better at reducing the side effects. Try 400 mg at the time of your shot and then another 400 mg every 4-6 hours after that as needed (usually not more than 2 or 3 additional doses of ibuprofen). I've also found the side effects are easier to tolerate if I take my shot in the middle of the day. When I took it at night, I was never able to "sleep through the side effects." I would typically wake up with the chills and a fever and one time I was shaking so bad I could barely walk. It seems that my body would not regulate its temperature well when sleeping on Avonex. In contrast, taking it in the middle of the day is much better and I usually sleep without any problems.

NHE