Which MS drug to use?

[em1228]

My diagnosis is new and I have only started on baclofen for the spasticity in my legs. I would l would like to hear which injectibles are considered the best and why. I was put into the secondary progressive group and am not sure what they will put me on. I heard copaxane makes you gain weight and leaves hard bumps on your legs. Vain, yes I know.

So if anyone would be so kind as to share their experiences, I would greatly appreciate it.

Thank you all

Emily

[sllowe]

Hi Em,

Sorry to chime in so late.  I'm on Rebif. And I understand your wanting to minimize marks on your body.  I get a silver dollar sized red mark, but it's not raised, itchy or lumpy and it fades pretty quickly - typically it comes out a couple days later.  I find injecting straight up w/out an auto injector minimizes trauma to the skin because the needle is very sharp. You don't feel it most of the time if you use some of the tips and tricks the nurses provide. I'd be more than glad to share my techniques with you.

Sorry for the secondary dx - but you never know.  Maybe one of the DMDs will cease progression.

I was not sure what med to go on either, and my Dr. recommended Rebif. What I like about it is that the needle is super thin, it's not daily and side affects are minimal.

Thank you for joining us - please ask anything, I'm sure I've left lots out.

Angelcakes and Miffny - WELCOME! Sorry for my absence!
Looking fwd to getting to know you all,
shell

[Miffny]

I was injecting Copaxone for 6 weeks it gave me pit holes  where I injected  my legs are the worst,hips & stomach just as awful  that I later found out to be a common side effect known as 'Lipoatrophy'. I had to cease Copaxone as I had allergic reaction the bumps were always burning & they didn't go away.The burning was too much than came shortness of breath so I called it quits.

[Karen99]

Hi.  I tolerated the Copaxone very well except that it left dents on my upper thighs. (I didn't know this happens to others until now)   No problems in the abdominal or hip areas where there is plenty of womanly fat tissue.  I had always thought that my thighs didn't have enough fat on them to tolerate the injections.  

[AngelCakes21]

I'm on Rebif. I was on Copaxone. I couldn't take it. I get lumps from the injections even when I rub the injection site afterwards. They leave bruises, sometimes not as bad as others. But since you rotate sites more frequently with Copaxone I was injecting so close to old bruises that it became to painful and I'd skip injections. The lumps were also sooooo itchy that I had to scratch which just made them worse.
With Rebif only being three times a week, I get a break. I didn't gain on loose weight with either. I also don't get the flu-like side effects. I do take tylenol about a half hour before I inject.

[jensequitur]

I really don't like what Copaxone has done to my skin.  I've been injecting it into the fat areas, like my stomach, hips, upper thighs.  My upper thighs were a little lumpy - now they're REALLY lumpy.  There's a huge lumpy dent right in the middle of each thigh.  My stomach used to be smooth  - now it's lumpy too.  I have two huge dents, one on either side of my belly button.  And my hips are dented in too!  Everything looks terrible.  

I have had a problem with weight gain, but I can't blame it on the Copaxone - I tend to gain weight unless I'm working out three times a week, and that's been very hard to do.

[Lulu54]

From our health page on WWW resources, we have this posted - and I would highly recommend you step through the drug selection process on the MS UK site.


Medical treatments can be broken into two categories – the Disease Modifying Drugs (DMD’s) that are meant to alter the course of MS; and the treatment for symptoms - these are drugs and therapies that can be used to alleviate the every day symptoms of MS. Information on these drugs for symptoms can be found on the web and are perhaps too numerous to list here.
The MS Society of the UK has built an interactive guide that walks you through the process of deciding which DMD might be right for you, depending on many factors that it asks . I found this tool very helpful in understanding the differences in the drug treatments.
http://www.msdecisions.org.uk/


DMD’s – these are the company-sponsored MS support program websites for their respective drugs.
Avonex – www.avonex.com
Betaseron – www.mspathways.com
Copaxone – www.sharedsolutions.com
Rebif – www.mslifelines.com
Tysabri – www.tysabri.com


http://www.medhelp.org/health_pages/Multiple%20Sclerosis/MS-RESOURCES-ON-THE-WWW/show/493?cid=36

I was thinking about your question a few minutes ago and wonder - the injections are in the front of the thigh, and unless you wear mini-mini skirts or very short shorts, no one will see the injection site.

Good luck in coming to a decision.  

[em1228]

thank you both for your responses. I know vanity should not get in the way, it does seem the only thing to hang on too.  I am glad to hear you both are not having any real complications. Are there any Rebif users out there? Or what are the others? Avonex and the Betaserons?  

Lulu54 and HVAC. Thank you both and be well

Emily

[Lulu54]

The bumps I get are very temporary and are almost always gone the next day.  The one problem with copax is the decaying of the underlying tissue sometimes, but I've been on it a year and haven't seen evidence yet that I need to use something else.

Vanity is ok - we have to hang on to something.  But please don't let vanity stand in the way of getting treatment, ok?

be well,
Lulu

[HVAC]

I am on Copaxone and have lost weight and there were bumps at first but they went away. You can't tell where I inject.

Alex