Should I try a different DMD?

[BOK2Bjan]

I was on Copaxone for a couple months, but stopped due to severe site reactions.  I've been off for a couple months and now I'm nervous about not being on anything. (one mild flare since stopping)  I am sort of in denial, but at the same time, I'm doing a great deal of research to see if there are alternative therapies that make sense for me.  I'm on narcotics right now and need them, so I am not a candidate for LDN (although would like to try it sometime)  I didn't like the sound of the flu-like symptoms with the other DMDs due to so frequently having fever and flu like symptoms already from aspiration pneumonitis.  But, maybe I could actually handle one of the other ones better than I did Copaxone.  We are all so very different, after all.  

I'd love some input as to how the different drugs work or worked for others and what anyone might suggest.  And also, my user name had to be changed a while back from JAN53 to BOK2BJAN (in case I didn't mention it or anyone noticed or cared. lol)

Blessings, Jan

[BOK2Bjan]

Thanks - that is reassuring.  I don't mind the injections at all.  I don't even expect to not have some discomfort or reaction.  I just need it to be tolerable.  I thank you for telling me about your success.  Everyone is so different - that's for sure.  I just figured that since most had fewest side effects with Copaxone, that it was the best for me.  I should have figured I'd be different!

I certainly welcome all comments.  I plan to make the appt with the MS specialist.

Blessings, Jan

[Mand125]

Hi Jan
I have been on betaseron since August last year. I do have injection site reactions but nothing I can't handle.

I get slightly raised red patches, some bigger than others, the smallest being about the size of a quarter.

Sometimes it can be difficult to find an area to inject that doesn't still have a red mark from the last time but I always manage.

I really feel that betaseron has made a difference. I have not had a relapse since starting it.

I had headaches post injection for the first several weeks but don't get them now. I never got the flu type reaction.

I hope you manage to get something sorted out soon.

Cheers
Mand

[sllowe]

I'll be glad to share -

I'm on Rebif - one of the interferons.  Injection sites are minimal.  3xs a week injection. The needle is very thin and small.  I self inject instead of using the auto-injector.  It auto is too abrupt for me, and I like the ease in which the thin needles goes in straight up.  I only get a red mark but it's not raised. It's not very long, and only once in awhile does it sting, etc.  Afterward, an area may feel a little bruised, but that's about the extent of it.

The flu-like symptoms were not bad for me.  I still inject at night just incase I were to get any, but they really did fade away after only a few months.  They didn't stop me from working, etc.

Hope this helps!

[BOK2Bjan]

Thanks for the input gals.  I did give it more than a fair shake.  I made an appt with my neuro and explained the reactions.  She said many of her patients had the same. (and didn't go away)  I don't think she quite realized how bad mine were.  Anyway, when I told her about the intense pain on injection, (severe pain lasting up to 1 hr that nothing relieved, w/ some sites swelling to huge welts the second the med went in) she said I needed to stop immediately.  I protested and explained that I could handle the pain if I knew it wasn't hurting me etc. and I wanted to keep trying.  I'd heard so many got better after a few months and so didn't want to be a woos.  Well, I kept it up and mine just kept getting worse with each injection.  (The after injection reaction - welts & itching etc.) When site 1 rolled around after 7 days, it would still be swollen (5 - 6 inch welt with hard center and horrible itching)  I was running out of places!  Also, I couldn't stop scratching and was getting terrible bruising all over.  I thought I might have an allergy or something, but my neuro is, quite frankly, not very interactive.  She never even explained the disease when she told me I had a "slam dunk dx of MS".  I didn't even know her.  She'd been keeping track of my brain MRIs my PCP ordered and I didn't even know she had been suspecting MS for over 4-5 years.  When I had my spinal tap and VEP, I still thought it was some demyelinating disease that I didn't know what it was.  HA!  My PCP just kept thinking all my neurological symptoms were from the SSc.  She came in my hosp room and said without fanfare, well, you have ...... and I needed to pick a med, and walked out.  At my appt I thought she'd tell me all kinds of things, since I hadn't even suspected I had MS, but she said nothing.  When I went in to explain about the copaxone, I asked her to fill me in more with what to expect and what type I had etc.  She acted like I was crazy to ask.  She kept saying, "I don't know what you expect me to tell you, Jan, MS is so unpredictable and you have so many diseases, I can't sort it out".  That's when she said the phrase I've mentioned often here - "Jan, you need fairy dust".  So, when I finally went off, I didn't even tell her.  Getting in before to see her had been a battle - apparently she doesn't want to be very hands on.  I may go to an MS specialist here in Kansas City.  KUMed has a good one.  They also hae an expert in Pulmonary Hypertension and Gastroenterology - all of which I need.  She suggested it, since my case is so complex.

I can't seem to write a short post.  Sorry.  I wanted input just like you gave - and ess, saying Avonex wasn't bad.  I took Methotrexate for a long time for my Sys Sclerosis - 20mg/wk and didn't have any problems.  So, maybe I would do better with meds others have trouble with.  I NEVER HAVE BEEN NORMAL after all.  I react differently to almost everything!  

Anyone else with personal experience with the interferons, I'd love to hear.  I totally agree I need to be on something.

Blessings, Jan

[sllowe]

Hi Jan,

Just adding agreement on with Essy, and Sally that you should talk to you Dr. about the injection sites, and then discuss a possible switch once it's agreed upon.  Just be sure to give any med (unless you get an obvious allergic reaction) it's fair shake.

They are meds afterall so they all have potential for side affects.  You'll get a variety of experiences here with us.  If copax is like the interferons, you will have some protection for a little while while off of it if you were on it long enough.  Take a little time to make peace w/the decision.

-shell

[Salamander2]

I agree with ess.  Time without DMDs is time lost.  Check out the med pages her and also the videos.  I had the same difficulity with the Copaxone.  My Neuro helped me find the right med and I am very happy with the results.
Sally

[essdipity]

Did you talk to your neuro about quitting Copaxone? And did he or she agree that your reaction was beyond what is relatively normal? Many forum members have complained (with good reason) about the rather awful mess Copaxone can make of their skin, lumps, itching and so on, only to report that after a few months, and after experimenting with site preparation, needles and so on, that things had gotten to a manageable level. This happens with the huge majority of Copaxone users on the forum.

However, not everybody. Not me, for instance. After about 2 months I had hives and rashes that were truly terrible, not to mention welts, lumps and bumps. The itching drove me crazy, and I tried everything to counteract it, all to no avail. My neuro said I'd developed an allergic reaction, which now that I think about it, is not surprising for me, as I get a fair number of rashes, etc., from various products, detergents, etc. I was taken off Copaxone, and that ended that.

Not long thereafter I started on Avonex. For me it hasn't been bad at all. I take care to prevent as much reaction as possible, and that works well. Not 100%, but at least 90. Not bad, not bad. And no lumps, and no itching!!

I urge you to try one of the interferons. Your disease is progressing without treatment. There are no guarantees with anything, but you at least want to be able to know that you did everything you could. As you well know, MS is nothing to mess with.

So get busy and get started!

ess