ready to call it quits

[readingteacher]

Okay, so I have been hanging in for about as long as I can with Betaseron. Every now and then, I have a good day without having to constantly take Ibuprofen or Aleve. I am not even sure how much Aleve I should take, because I have a rx level of Ibuprofen (800 mg.).

I got the Aleve because I was afraid that I may become intolerant to the effects of the Ibuprofen. On a good day, I may get away with not taking it as much or I may just be able to take a muscle relaxant when I can nap. However, I am realizing that there are more bad days than good.

Today was a very bad day. I took my shot last night, awoke around 4:30, with body aches, and took an Ibuprofen. I felt okay (not great), until the Ibuprofen wore off. I took another dose, but never really felt any better. I had to run a few errands at the supermarket and Walmart. I was able to use a scooter at the supermarket, but there were none available at Walmart. I hung onto a cart and did my best to just get what I needed and go.

Even after I got home and took a nap (with the help of my muscle relaxant; needed after my legs stiffened and dragged in the store), I felt horrible. After my nap, enough time had passed that I could take another pain reliever. I took 2 Aleve, hoping it would help. I was totally miserable and achy for 8 hours; just trying to get through the rest of the day. I just took some Ibuprofen before I go to bed. I am really hoping it will help, and that I will feel better tomorrow.

I am ready, at this point, to just quit Betaseron and not be on any DMDs for awhile. I have to wait until Monday to reach my neurologist, but I am definitely going to tell him that I cannot function like this. I can't handle feeling this bad as often as I do.

[Camsue]

Hi readingteacher

Sorry you're still having such bad side effects....I don't remember how long the bad side effects continued but I didn't know about pre medicating back then. Are you taking the Ibuprofen or Aleve when you take the meds at night? Some how it works to lessen side effects hours later and the next morning.

To switch or not is a decision that you have to make. I wanted to switch when other DMD's came on the market, but Betaseron was working for me so with my doctor, we decided not to 'temp fate' and stay on Betaseron. The side effects did lessen and along with eating better and losing weight, I am enjoying life ... I still have fatigue episodes, etc, but I thank God and my lucky stars because I am doing as well as I am

Good luck with your decision and I hope you feel stronger soon

[readingteacher]

Camsue,
Yes, I have been very careful to make certain that I take my Ibuprofen about an hour before injecting each night.

Last night, after consulting with my dh about this, I made the choice not to take my injection. I was going to wait until after I'd talked with my neurologist, but I knew that I would call him today. Even so, I awoke around 6 a.m. needing to take Ibuprofen, and was surprised to find that I was in desperate need for it again, before noon. I was away from home, so I was quite miserable at the meeting I was attending at the time. I was able to take some around 1:00 and it finally helped.

As long as I know that it is okay to stop "cold turkey," I am happy with my decision. I do wish my neurologist had returned my call, though. I left a message with a nurse in the department because he was not in yet.

I'm really glad that it works well for you, Camsue. That was what I was hoping, when I had to begin taking it. Thank you for your kind input.

[Alicious]

I'm sorry this med isn't working out for you. I can't handle interferons either. Thankfully, there are more and more meds available for you to choose from, if you choose to go on one. I'll be honest--I'm very pro DMD, but I went off of all meds for 3+ months at the end of last year and felt so good. Like me again. Thankfully I still feel like me on Tecfidera, but sometimes it takes experimentation to figure out what works best for you.

[Special Kay]

I took Avonex for five years and never got over the side effects, so I feel your pain. I don't regret it, though, as I never had a flare during that time and had stable MRIs.

I take Tysabri now and have no side effects at all, plus it is more than twice as effective as the interferons.

[readingteacher]

Thanks for the input, everyone. It's always so much more helpful to hear from someone who has some personal understanding about MS and taking the meds for it.
I finally, after another reminder call in the morning, heard back from my neuro's office. The nurse said that it was her job to try and convince me to continue on some type of DMD. However, she said she could certainly see why I was choosing to not be on any right now.

Her biggest concern (and probably my neuro's) was that I would not continue to see him regularly; that I would cancel my appointment in October. I assured her that I would be there for my next appointment and had no plans to stop seeing him on a regular basis.

[Special Kay]

My neuro told me she has patients who choose not to take DMDs. She said that she personally would not make that choice if she had MS, but supported them and asked that they continue to see her and allow her to help manage the disease.

If you decide to stop taking DMDs, you will want a doctor like that who works with you so that you don't avoid the neuro altogether.

[readingteacher]

My neuro told me she has patients who choose not to take DMDs. She said that she personally would not make that choice if she had MS, but supported them and asked that they continue to see her and allow her to help manage the disease.

If you decide to stop taking DMDs, you will want a doctor like that who works with you so that you don't avoid the neuro altogether.

I am really hoping that will be the case. He has Parkinson's disease, himself, so I feel like he is more understanding of the patient's perspective. I guess I will find out for sure in October. I really like him, as a neurologist (and he seems to have a great reputation among his peers for his knowledge and expertise), so I don't want to have to look for someone else.

[highlandmck]

similar issues

i had exact same issues, i am now on tysarbi which appears to be better but only had 3 infusions.
Although last one i ended up in ER but that may have been an infection that caused me to have 103 fever,but still not giving up on that one as yet lets see what 4th one does for me.
Betaseron gradually got worse for me with side effects,flu like symptoms and injection sites were none to good

[Outacontrol]

Ibuprophen did not work for me. I've found that I have no problem as long as I take 2 Tylenol Xtra within an hour prior to the shot. Hoping you are feeling better soon!