I'm new here. I was just diagnosed on March 17th with MS. Had my MRI done on March 9th, with no contrast used (which was against the Neurologist's request, and my consent). Results came back showing numerous lesions on my brain (not quite sure what numberous means, I really couldn't pull it together long enough to ask for an actual total number.)
The Neurologist feels that I qualify for some drug therapy, and sent me home to think about which one I wanted, and told me to call him next week with my choice. Feeling a little lost here right now.
I see a benefit with Copaxon not having any of the flu symptoms, and there is no real chance of spasticity worsening (which I am having some of right now, definitely do not want it to get worse) I am concerned about the difficulty breathing following injections, as I think that I am possibly already having respiratory issues. Didn't realize it, until now, but it's probably related to the MS. I sometimes feel the need to take a deep breath or sigh. Anyone else have this? Also, more problems with injection rashes.
The other interferons seem okay, no breathing issues, but possible worsening of the spasticity, flu like symptoms and depression. Sounds bad when I put it like that, but it really does seem to be a toss up.
I guess what it really comes down to, my biggest concerns between the drugs are the possibility of increased spasticity vs having the difficulty breathing (anxiety attack).
Any help would be muchly appreciated.
I'm freaking out a bit here.
I haven't had any problems taking Copaxone either. The most frequent complaint we hear on the forum is about local injection site reactions during the first few months of treatment. I am familiar with the urge to deep breathe you described. Starting Copaxone didn't make that better or worse. I think it is connected to brain stem lesions for me.
I do wish doctors would give their patients a little more guidance about what DMD they think might be best for them personally. It's hard to have only drug company propaganda to rely on when making such an important decision.
Hopefully, members who use other DMDs will chime in here. I only have experience with Copaxone. It has worked well for me but it is good to know there are other choices if it hadn't gone so well. This isn't a forever decision. You can always switch if necessary.
Lulu has a site she recommends to help walk you through the decision about which drug might be best. I'll look for it but I'm betting she will post it before I find it.
Take one of those deep breaths your body craves and RELAX. Sounds like you've had a lot happen in a short time and it is so easy to get overwhelmed. Stress isn't your friend so try not to let anyone push you into a short time table if you aren't ready. Take the time you need to come to a decision you can feel comfortable with. We'll be glad to help in any way we can.
I just want to send your a big welcome from the UK. I cannot give you any advice about DMD's as I am on an oral drug trial and when I read all the literature on DMD's I went round in circles. I think you just need to go with your gut reaction and if one does not suit you or work out as othes suggest, you can always request a change as they all do the same job.
Let us know how you get on and you are welcome to our great forum.
Just remember there is no wrong choice when it comes to these drugs. The doctors often don't recommend one over the other because they have to avoid the appearance of a conflict of interest. Most of the MS doctors do some type of consulting/paid appearance work for the major drug companies and cannot in good consience recommend a specific drug even if they have a preference.
The site Mary gave you is excellent to talk you through the choices. And yes, I was sound asleep in the middle of the night here!
As for the post-injection reaction, it has nothing to do with breathing. It is a reaction that mimics the chest pains of a heart problem. It passes so quickly that the doctors have yet to observe this reaction for themselves. You just need to know it is a possibility and if it happens how to handle it. Having had a heart attack, I believe there is a big difference between the two! :-)
I was dx with MS on 1 Nov and started on Rebif 20 Nov. My doctor gave me the choice of Avenox and Rebif. I picked Rebif for the size of the needle. When it comes to needles I am a baby. The first month on Rebif my husband had to give me the shots but now I am able to do them myself. When I started I was having spacity in my legs and that has stayed the same or gotten better on some days. I do not think my spacity is getting any worse.
I don't have flu like symptoms from Rebif. I do my shots, Tue, Thur and Saturday night and take tylenol or motrin before I give myself the shot. I do have site reactions from the shots. I have had two blood tests to check my liver counts and so far the counts have been in the normal range. I go back to the Neuro on 20 April for more blood tests and to see how I am doing.
I am taking 25mg of Zolof for depression and brain fog. The doctor put me on Zolof before I started taking Rebif because I was complaining that my mind was in a fog. The brain fog is gone and I finally feel better and am enjoying life again.
Take you time in picking a DMD but remember that you can switch if the one you pick is not working for you.
So glad you have the meds available to you. I'm on Rebif and have not had an increase in spasticity. You never know what side affects you may or may not get so no matter which you choose you'll have to weight them out.
I think the flu-like does put off most folks because they think about having the flu and know for sure they want no part of it. The really is no comparison between the actual flu and side affects of interferons. You may feel a bit achey, get a headache but most affects fad over time for most. The needle is super thin which helps.
There are those things that will be monitored and those include thyroid, WBC, and liver enzymes.
Like Magie, I think you should take your time w/the decision too. So you feel good about it because that will help you stay on therapy. And, remember this - you can switch if you find the med is not for you. So, the decision is not set in stone forever.
Hope we can help you move forward and hope you are feeling ok.
When I was on Rebif, I took some Ibuprofen at the same time I took my shot. I really noticed the difference when I forgot the Ibuprofen! I'm starting Betaseron, soon ( I was allergic to Rebif), and I imagine the scenario will be the same. I did my shots at night before bed, and by morning, most of the time I felt human. If I had any residual "creepiness", I took another 400mg of Ibuprofen with breakfast, and I was good to go for the rest of the day.
Good luck with what ever decision you make, and WELCOME!
I'm really not sure if I am doing this right, because I am actually responding to myself right now (a tad bit computer challenged). Hopefully it works.
Well, thanks a bunch for all the comments, and the website from Mary. I still have some information to mull over, but I think I am closer to making a choice. I am very flip-floppy right now, and realistically could go either way.
Right now I am between Rebif and Copaxone. Yesterday I was sold on Copaxone, but today I was swayed to Rebif. Has anyone tried both? What are your thoughts about them? Has either really been shown to work better than the other?
On another note, I went for my 1st of 4 steroid infusions today. It went pretty well. I do pretty poorly with intervenous, but no problems at all. Chin up for me I guess for the rest of this. I decided that I am just going to ride the wave, but will do everything to master the tricks while on it.
I looked at all 4 of the CRABs and their prescribing information. The interferon betas function as an anti-inflammatory and are thought to improve the blood brain barrier. This makes some kind of sense since interferons are a subclass of cytokines (a molecule that provides external signals to cells.) One of the cells cytokines communicate with immune cells. Because cytokines have some control over immune responses, they are classed as immunomodulators. [Wikipedia contributors. "Interferon." Wikipedia, The Free Encyclopedia. Wikipedia, The Free Encyclopedia, 18 Feb. 2011. Web. 23 Mar. 2011. ]
Copaxone is a different animal all together. It is four naturally occurring amino acids in various random combination that resembles Myelin Basic Protein. While the complete method of action is not fully understood, Copaxone is thought to work the same way allergy shots work. By injecting Copaxone around the body in peripheral locations, the immune system begins to see this "MBP" look alike (a false target) as a common substance that is not a threat. Over time, the immune system will no longer mount a "killer" response, but mounts a suppressor response. According to the Teva literature: "Administration of glatiramer shifts the population of T cells from pro-inflammatory Th1 cells to regulatory Th2 cells that suppress the inflammatory response."[Wikipedia contributors. "Glatiramer acetate." Wikipedia, The Free Encyclopedia. Wikipedia, The Free Encyclopedia, 13 Feb. 2011. Web. 23 Mar. 2011.]
It came down to me looking at the side effects of both drugs and in the end, the "allergy shot"
action of Copaxone was something that made sense. The limited side effects and the occasional reported cases of IPIR seemed to pose an acceptable risk vs. the risks with the interferons.
I talked it over with my partner and I went back to my doctor with what my understandings were and some questions and in the end we decided that Copaxone was a good fit. It should be a joint decision.
Called the neurologist today and left a message that I was leaning towards Rebif, however will hopefully get a phone call back to him to help solidify my decision. Talked to my family doctor, whose wife has had MS for 26 years, and he really has no favortism at all towards one drug over another.
Almost finished with my steroid infusions (one more tomorrow) and am feeling MUCH better already. Can actually bend my knees going down stairs right now. Hope this lasts for a while.
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