I hope everyone is having the best day ever!! This is my first post. I decided to join the chat because there is so much support and positivity going on here. Also, I would like for others to chime in with thoughts, views and experiences if you will :). I was diagnosed with MS in 2015. I started taking the Avonex injections per doctors advice. I took them for 9 months and my insurance was cancelled. At 10,500./mo. I could not afford to pay out of pocket. After 7 Months I was enrolled a in a free drug program and I was back on the Avonex faithfully for over a year. As of 1/18 I stop taking them again this time because I felt as though I spent more time out of the game getting over the side effects of Avonex than I spent actually dealing with the side effects of MS.
At this time I am experiencing issues that I am not sure if the Avonex was offsetting or is this something I would be going through regardless. I want to give God an opportunity to show himself strong in my life and I don't want to go back to having 2-3 days taken out of my week, every week due to administering the injections. My new young doctor (the other neurologist is retiring) has suggested that I continue with the injections (without titrating the doses I might add) as soon as possible. I am torn, please share your thoughts.
Jozzi
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Jozzi
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Jozzi, I used to take Avonex and the side effects almost killed me. Ask your young neurologist if he can offer Gilenya. It is a pill taken everyday. It has no side effects. You will absolutely love it.
I have been on seven different DMT’s over the last twenty three years. As things progress I did to with progressive DMT’s as they came out and improved 👍 I was on Tysabri for seven years and it worked great. I was still working so I did them on Friday afternoon as the only side effect was fatigue for a day. I was good to go by Monday for work 👍 Then the C (cancer) hit and My white t-cells dropped and I had to change. Have been on oral Aubagio for over a year now and things are going well 👍 No side effects and last MRI stable 👍🤗 The DMT’s effect everyone differently 🤷🏼♂️. Good luck and hope things get better 🙏 Do your own research and make your own recommendation to Doctor 🤷🏼♂️👍🙏😉🐾🐩 Ken
I know that it’s suggested that MS patients start and be on some type of DMT as soon as possible and I personally don’t know where I’ll be if I didn’t start and continue on some type myself. I know there’s side effects that we have to deal with but me personally weighed the pros and cons and I decided it’s worth it, but that’s me and everyone has to make their on decisions and I would never tell someone what they should do.
Good luck on whatever you decide and keep us informed.
I use to be on Avonex. It would shut the body down hours later after injection. I would have instant flu like symptoms. The chills mainly. The shut down part would be me not walking and pissing on myself. It kept me stable in sense of what the MRI should say. Once doc realized what i was going through. He switched me to Aubagio. Again far as MRI everything was good but my mobility had worsened since being on Aubagio. Now i have opted to try Ocrevus. All i can say is be your own advocate for u Jozzi and you will make the best decision u see fit for you! Good luck with your route u choose!
Hi Jozzi ! Welcome! There is a broad spectrum of people dealing with MS here so you will always find understanding and support. We are a wide range of ages and experiences. MS affects everyone a little differently but we all understand the chaos it can cause.
Here is my cautionary tale about DMT's....keep in mind that each body is unique and that everyone's MS experience is their own. If you were to do exactly what I did, it might not have the same outcome.
I was diagnosed almost 19 years ago and my first DMT was Copaxone. At the time it was a daily injection and I struggled with it every day even with an autoject. (I'm kinda needle phobic.) I also had some significant side effects from it periodically. One day, several years in, I hit a psychological wall and couldn't make my self do another injection. I literally sat there with the needle in my hand for over an hour trying to psyche myself up for another shot. So...I decided to give myself a break for a week. That week turned into a month and that turned into...a long time. I could kick myself now because I had my biggest MS flareup while on my self-created break from Copaxone. That flare left me with one of my worst symptoms ever that affects my vision every day. Back then there weren't the options for DMT's that exist now. You could only chose from drugs that were injectibles.
If Avonex isn't working for you for whatever the reason, look into the other DMT's that are available. There are so many now that you can probably find a different one to try.
Also, you didn't mention if your neurologist is an MS specialist or not. Hopefully he is for your sake. There is so much going on in MS research, and so many new drugs out there, that doctors that aren't specialists simply aren't as aware of all the options and typically aren't as effective in treating it.
Welcome to a wonderful place filled with lovely, helpful people! I hope you find as much support as I have.
When given choices (and thank God there are many more now) as to what DMT to use, if any, I kind of did a side by side comparison. You and your doctor can consider your lifestyle, your other health issues, what you feel comfortable with in terms of administration, costs, benefits versus risks, etc.. There are so many things to consider! If three is an MS clinic nearby, it would be worth at least considering going to one.
I was so glad my doctor worked with me to find what I was comfortable with, rather than just telling me what she would prescribe. I'll be praying for clarity for you and your doctor.
Welcome! I'm confused as to how people choose their meds in the first place. (My only option was and still is Copaxone) I think once you find one that works, it's hard for your doctor to justify changing to the unknown. I'm sure you're not the first to say you'd rather not have the flu for half of the rest of your life. I'm not looking forward to when it's my turn to say I'm done with these obnoxious bee stings 3 times a week, let's take a chance on something else. Good luck and please let us know what you decide!
Meds are tricky because everyone responds differently. I had almost no side effects on avonex and I have been on rebif for 13 years without any trouble.
But my neuro started me on melatonin this week and I’m struggling with it and had to lower the dose!
You just never know how a person will react to anything. Ask your doctor about trying something new before stopping meds altogether. After 18 years with MS I give them credit for maintaining where I am.
Jozzi, this is Fancy 1959 and I would be honored to welcome you to this awesome chat room. We're happy you found us! You have found a safe place to come and ask questions, voice concerns, or simply speak to someone who truly understand what you are going through. And you are right this chat room is full of some of the kindest, compassionate, and caring people I have ever met.
I have a couple questions for you. Do you know what stage of this disease you are in? And nothing personal but can I get your approximate age. The two will help determine where your disease is and what's appropriate to fight it with. You need to understand we are not doctors in this chat room we simply share with you our experiences and hope they help you. You need to talk to your neurologist for all medical advice. But I would suggest if your neurologist thanks you need to start back on a disease-modifying therapy or what we call a DMT you need to follow his or her advice. What you notice as changes are just the tip of the iceberg which we call the monster we deal with or MS. Most of the damage the disease is causing is hidden beneath and within your body and you won't notice it until it knocks you down. Please don't let it go there without fighting back! As many family members in this chat room have spoken to you about there are a lot of options out there today. If Avonex doesn't agree with you there are a lot of other choices to be had. Speak to your doctor about other DMTs that might be available for you to try.
I look forward to speaking to you soon. The more you reply and post with us the quicker we will get to know and you will get to know us. There is much we can learn from each other! Make sure you find a Post from jimeka and give her your birthday information so she can sign you up for our birthday Club. You are part of our extended family now and as families are want to do we will help celebrate your special day by sending you a ton of birthday wishes! Until we speak again please take care and remember together we are stronger! Fancy.
Hi Jozzi. Welcome. I know you will love this group. God CAN and does work miracle. He cured me about 8 months ago. I had some healing sessions at a very spirit led church. Have been symptom free since then.
Have you considered a drug w fewer side effects. I used to be on Copaxone. No side effects other than injection site. I did well on it!
Jozzi Welcome to this wonderful group! I'm Jessie and I was diagnosed in 2006. Can't believe it's been that long already! Time sure does fly by sometimes! Sorry about the side effects from Avonex, I have never been on it. I was on Copaxone since the beginning and went off it last year because of all the welts that didn't want to go down like they used to and have been on Tecifdera for about a year now and doing well. There are so many new drugs on the market now so you will have do your research on what you think will work for you then talk it over with your Neuro to see if they agree. Keep us updated!
Jozzi Glad you joined the group. This is a great place for information. There is someone here that has experienced jus9t about anything you are going through. They are so helpful. You will be glad you joined.
jozzi Good to have you here! I will speak out for Tecfidera. Two pills a day works wonderfully for me. Never been on anything else, but what could be easier than taking 2 pills a day, if you can have that option? No sickness, at all since the first month, and that wasn't very bad. Some people have more severe symptoms at diagnosis, which might cause the Neuro to put you on a stronger DMT. I didn't want needles if they could be avoided. I'm starting on my 3rd year, with no new lesions at the December MRI, so I'm good to go! the manufacturer, Biogen, is also very good if you need help with costs. I'm 75, been diagnosed 4 years, but probably had MS for 40yrs.
I had the exact same experience with Avonex in 1999, when I was first diagnosed. I got a new Dr who said that my symptoms were more related to the Avonex than my MS. He put me on Copaxone in the summer of 2000. With the exception of my pregnancy (in 2001 and the first few months of 2002) , I have been on it ever since. The shots are only 3 days a week NOW but I took it daily in the past with NO side effects like interferon. I get my shot in the evening a few hours before bedtime. The next day I can't remember if I had it because I feel NO DIFFERENT after a Copaxone shot. I have been offered countless other therapies over the past 17 years and I always said no. Copaxone has its downside of course, but nothing like the "interferon hangover" that used to last all week for me. The newer therapies are far too risky (for me anyway). If I WERE YOU I would SWITCH from the Avonex ASAP! Don't lose any more precious days to interferon. If you choose Copaxone or something else, your symptoms of interferon poisoning will disappear. Then you will be able to identify what is actually MS instead of wondering if every symptom is a side effect of medicine. I wish you the best whatever you decide, but the first Dr I saw said that the interferon reactions would lessen over time. (they Didn't- they got worse just like Yours have). The new Dr said that I would always have this kind of reaction to interferon, and I have been so much more productive since I switched to a non interferon Copaxone. Don't let your Dr tell you to continue on a therapy you aren't happy with. We have choices when it comes to a DMT and you should find one that YOU can tolerate.
I pray that you can switch to a more tolerable therapy immediately and I would love to hear from you again if you have any questions about talking to your DR or taking Copaxone.
I was on Avonex for over 20 years i stopped taking it because I didn’t like the intramuscular injections and flu side effects but I had a major relapse, although Avonex did do the job in preventing relapsing. My neurologist put me on Ocrevus but my I’ve lost so much hair I’m supposed to see my neurologist in July and I want to go back on Avonex again since I feel it worked very well all those years I will just take the 800 mg ibuprofen with it because that pretty much got rid of the flu like symptoms. I hope you find a dmt drug that works for you and you start feeling better.
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