Anyone not taking meds at all? I tried Rebif for 5 injections of the lowest starting dose of 8.8 and become too depressed to keep going with it. I'm afraid all the injectables may have that reaction in my body. Can diet and exercise have the same affect?
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4/20/10 11:24pm
Hi Proby,
Each person's reaction to different meds is going to vary. Perhaps Rebif is not the right med for you. If you are newly diagnosed, please keep in mind that depression is very common with the disease and as a reaction after diagnosis.
At the beginning, I chose Copaxone because I was afraid of the potential side-effect of depression with the interferons. Copaxone seemed to work OK for me for the most part. But now I'm using Rituxan (an IV med).
Some people really do believe that diet and exercise can help control this disease. It is smart to eat very low amounts of saturated fats and lots of fruits and vegetables. Get regular exercise too.
4/20/10 5:36pm
Hi this is smomdukes. I was taking the Beta shots every other day, Progivil for enegry, and Bacfolen for spacitity. Now I no longer do the Beta shots, I no longer take Provigil for my power pill. It had begun to not work anymore, my nuero told me my body would become imune, and she was right. I do still take teh Bacfolen, gotta have it for the spacitity. It works. My waking has improved since I no longer use the steroids, beta. But I suggest before anyone does that consult with their doctor first. I go back to the doc on Friday, April 30th I will post my docs. findings here. I know my vitamin D level was almost non-existant, I am now taking 50,000 per week, I would have my levels checked if I were you. No MS meds work for me, it may not work for everybody, so tread careful. I hope that this helps.
sherry/smomdukes
4/21/10 12:11am
I took Avonex for 10 years. I quit after a major flare in 2009. I was disappointed because I thought the med would keep me safe. It did not. So I began to research other possible med/treatments. I did decide on LDN, although it is not supported by my neuro.
Even more than medication, I believe that you should check your diet...try to follow the general principles found in the MS Recovery Diet or Swank diet. Exercise on a regular basis. I do modified water aerobics and a home yoga program. Take your vitamins: Vitamin D, Omega 3 and B-12. I drink alkaline water. It help to balance acid in our bodies and reduces inflamation. Aklaline water is hard to fond so I bought my own machine. Check out my web site, www.water4healthonline.com
The decision to take or not take meds is a personal one. I think docs prescribe meds "by the numbers". If you check around you will find agreat mix of people for and against meds.
Good Luck. Let us know what and "how" you decide....It could be helpful to someone else asking the same question
4/21/10 8:10am
Thank you for the vitamin advice. I asked my dr when I saw her 3/10 but unfortunately I really don't remember what she said. I take 2800 vit d and 1200 calcium, but I wasn't recommended to take anything else. When I've taken vits before-the multi-it made me feel sick. I had to take the kid vits. I'm so confused. I want to do everything right and with the rebif making me miserable it just threw me for a loop. thank you 
4/22/10 1:19pm
I take Avonex and after several weeks of shots I stopped having the flu like side effects and now I am able to get up the next morning and feel normal even well enough to go for a run. I like Avonex because it is only once a week but I am unable to give myself the shot and my husband has to do it for me. I would also encourage getting some blood work done to see where your vitamin D level is. I recently had become extremely fatigued and was sleeping a lot over about 3 weeks, I thought I was headed for a flare up and it dawned on me that I hadn't been taking any additional vitamin D outside of my normal intake. I usually take a daily multiple vitamin, 100mg CoQ10, 500mcg B12, 2400mg fish oil. I started taking an additional 1,000 IU of Vitamin D a day and after a week I could already tell the difference. I hope this helps, every one is different adn I am still trying to find my right balance, but there is a lot of information on vitamin supplements and how they can help improve health. I would consult your doctor and see what they think about changing your medication and possibly adding vitamins to your treatment. Don't give up on looking for things to help improve your health and improve your symptoms as well as slowing our disease down! Hope this helps.
4/23/10 2:43pm
Hello,
Thank you. I'm all confused about vitamins. It's great to hear what works for you and that you are still able to run! When I was originally diagnosed my vit d level was on the low side 38. I've been taking vit d (2800) since then and calcium (1200). My dr has ordered me Copaxone. I have lesions and had active lesions at the base of my brain-she showed me and it was odd seeing inside my head. Anyway, because of that she wants me on meds. I'm going to get myself moving again and clean up my diet.
4/23/10 1:04am
I haven't taken anything for my MS for seven months. I was diagnosed in 2004 and started Copaxone immediately. During that time, I had two significant relapses. Therefore, my Neurologist suggested that I switch to Tysabri. However, due to the cost of this drug, I had to stop.
Basically, I feel the same, in fact, I have more energy that I have had in a long time. I haven't had any relapses since stopping Copaxone and that was over two years ago. Last time I had an MRI, there was some additional scar tissue; however, one of my previous scars was gone (go figure?).
Kind regards,
Marlene
4/23/10 2:38pm
Thank you for sharing your story. My doctor has order Copaxone for me. I'm going to try and see how it effects me. Hopefully it will go well and maybe a lesion or two will disappear? :) I consulted my family and the advice was that the side effects aren't life threatening(unless I'm allergic I guess) and MS can be. So, in that respect I'm going to go with meds and exercise/diet. Still not a fan of the shots.
4/23/10 4:50pm
Hi,
I can totally relate to not being a fan of taking shots. It took me a while to get used to them too! What helped me was giving myself a shot in a different spot each day, i.e., arm, leg, stomach, rear-end, etc. Also, when my Sister came over, I would have her give me my Copaxone daily shot.
Please understand that not taking any med for M/S was not my decision. I just couldn't afford the Tysabri monthly infusions. They are around $3,000 per treatment. My insurance covered some of the expense, however, not all of it.
Good luck!
Kind regards,
Marlene
4/25/10 7:19pm
Hi,
That stinks that your insurance won't cover all of the cost of the infusions! Tysabri doesn't have a program to help with the cost? That's just wrong.
As I get closer to shot day the more nervous i get. i'm not sure when my meds will be in, but i know soon.... :)
Have a good night! PJ
4/26/10 8:45pm
Hi PJ,
Yes it does stink!
I did look into financial assistance through the company that makes Tysabri; however, I didn't qualify. (I am right in the middle as far as income!) My disability retirement amount is too high according to their company's fiancial assistance program.
I went almost two years without knowing I had any kind of co-payment. (No one told me.) Then 'low and behold' I received a bill for over $3000 from the Hospital that I was getting my infusions at. Needless to say, that was quite a shock!
Good luck with your shot! Please let me know how it went. My thoughts and prayers are with you.
Kindest regards,
Marlene
4/23/10 9:54pm
Hello Proby; It's been awhile since last post. IT IS WHAT IT IS, and it is always something. I thank GOD for the modern meds & inj. plans. I'm using Betaseron, every other day. After third or fourth round I gained stability. I could walk without having to hold on to something for stability. So far no side effects. Now onto the 20 plus daily meds. Have dropped some that quit working. Trying to get off prednisone due to long term side effects.Caused glacoma, left eye surgery last month, right eye next month. According to Neuro and lung specialist, the Beta inj. are in large part antinflamitory med. The lungs like steroids but they are taking a toll on the rest of me. I can remember life without my MS meds, don't want go there. I do want to cut back or combine the amount of these chemicals. If dog poop would help me I would have more than two dogs. FYI I've been in contact with MSers who live in states with med marajuana available. I gave my issues, pretty long list. The reply, all of the above were helped naturally, no chems, no side effects, well one, empty ice cream and cokie containers and wrappers. It seems to be trial and error, finding what does and does'nt work, were all different. Hang in there. GOD BLESS YOU & YOURS...........Mike.....
4/25/10 7:11pm
Hi,
so glad that betaseron has worked for you! I had 5 days of solu-medrol steroids and I loved it! I had so much energy, but I understand that it's not something to have long term-how come the good stuff is so bad for you? haha As for the med marijuana-if it helps why not-there are many pain killers that people have overdosed on and- has anyone ever overdosed on marijuana? maybe cookies? I'm fortunate as of now to not have any pain, but it sounds horrible to deal with. How do you keep track of all the meds? It does make sense that if something is proven to work then try it. It may not work for me, but it may and my kids will thank me for it. The encouragement helps!
PJ
4/28/10 7:47pm
Hello PJ; This is Mike again. My meds are kept in two tackle boxes, you know the ones with all those divider things. One for AM & PM meds, the smaller one is for the lights out group. This seems to work out pretty well. But every once in a while i'll get the AM & PM mixed up. No big deal most are the same. That's why the second tackle box. Maybe, to keep me from taking the magic carpet ride in daylght hours. The other day, had my meds in hand and mr spas decided to direct music. With two Boston Terriers if it hits the floor, it,s GAME ON!! Out went the arm, and meds went flying. That could have turned out, interesting, funny, sad, but the dogs were outside at the time. Anyway hope your doing well. ...GOD BLESS YOU & YOURS.....Mike........
4/25/10 5:24am
Hi Proby,
This is a very difficult thing to decide. It is a good idea to talk with others going through the same questions and hen talking with your doctor.
I was diagnosed over 20 years ago, before there were any disease-modifying drugs available. When Betaseron came on the market, it was with the caveat that it would not be effective for everyone.
Now that there are several, there is a good chance that at least one will be helpful. Sometimes, after a period of time on one of the drugs, it is helpfuf to change to another.
It is recommended you try one for longer than five injections to see if it is going to work. Before too long, there will also be oral disease-modifying therapies, and there are other therapies in the works.
With all of this in mind, talk with your neurologist about a goot therapy, the amount of time to try it before giving up, and other alternatives.
Good luck.
4/25/10 7:14pm
thank you for the advice. the five injection rule is comforting. i actually had 5 shots of rebif before it effected me with depression. my copaxone should be in this week and i'm going to give it a try. it's difficult because right now i'm not having any symptoms and i'm feeling like myself again. I do know that those nasty little immune cells are still at work though. i'm so glad that i posted this question- everyone has been so helpful! pj
4/26/10 3:02pm
Hi I don't take any med. for MS at all. I was on Avonex for 5 yrs(2000) and while I was taking it I could never get up to the full dosage. I always got all the flu-like aches plus I felt like hurting myself or hurting someone else. That was back in 2005. I have MS since 1996. I try to eat healthy and exercise as much as my MS lets me. I guess everybody knows their own system how much they can do & what they can't do. But as for me MS is not my only burden that I have. I am carrying a whole lot of baggage. But I am trying my hardest to stay well!!!
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Good morning,
I was thinking Copaxone may be the way to go for me. I was very positive up until the 5th shot. I can be sensitive to meds especially pain meds. The depression went away after a few days, but my symptoms worsened and now are more stable. Thank you for the diet advice. I read it, but it's nice to hear from someone who follows it and knows it helps.