Hello, hope you are well

[candy158]

Hello there, hope you guys are doing alright.  Just a quick question, went back to my GP today,. and have to have more testing done, and biopsies too.  But, has anyone been told to drop their Gabapentin,  stop Copaxone, and increase Elavil..???  That is what my neuro wants me to do, and I'm at 3000mg. per day, and I have twice done the tapering off, and I can't seem to get past the ...... 1800 mg. range, and the pain and stuff is to much, and I start upping it again.

The neuro stated after my last appt. that I should try to get it down to 1800, and she did not make another appt. to see me, and discuss what was happening.  So, I am going with my GP, and it does sound like the Neuro probably will NOT renew my copaxone after January, because the dx's is Secondary Progressive..... after one 10 minute appt. with a UBC Neuro.... that did not even know why I was there.  

So, for some reason my Neuro, is going with the report from Vancouver., and wants another appt. to yet another Dr.  

I am confused, and YES getting ticked again......

I just don't know where to turn really, but to trust my GP, ( who seems like a great guy) ..... and trust that he will be there for me.... (he has only been my Dr. for 6 months now) .... so, we are still getting to know each other.

Please let me know if any of you have gone through this kind of thing, and if so, how did it end up???

Thxs.
Candy

[SarahL2491]

3000 is a lot to be on.  I don't think the Elavil will be a equal substitute but.......its possible she feels the copaxone is not perfect for SPMS.  But then I am just another opinion!

Boy, I can understand your frustration!  Keep us posted!

[doublevision1]

Hi Candy,

Hard to answer re: increasing the Elavil and decreasing gaba, as you haven't said why you take them and why your doc he wants you to make this change.

eg: Are you having intolerable side effects from the gaba?  

Re: discontinuing Copaxone as you're dxed with SPMS, this makes sense to me, though have you asked about other suitable DMDs in light of your dx?  BC Health has proved Extavia and Betaseron for SPMS.

[doublevision1]

*approved*

[candy158]

Hi, I can actually answer your questions...LOL
I am on Gabapentin for the pain that I get, and have been on it since they first suspected MS 4 years ago.  The Elavil was given to e to help me sleep along with the Zoplicone.  As the other sleep aids were to scarey for me.

I am not having side effects, that I know of, they just want me to be on it.  I asked if I was as the Max of Gaba.  what would be the next option.  They then mentioned the Elavil increase and decrease the Gaba and I would be ok.   I looked into it, and it does not seem to be a good option.

I have 2 times now, reducted my Gaba down to 1500 mgs.  and could not get out of my chair very easily, and after seeing the Dr's in Vancouver, I again reducted down to 2100 mgs. and I was in bed with fatigue and pain, so, I don't know what to do now.

I agree with discontinuing Copaxone if it is not doing any good, but since I have been on it, I have had 1 relapse, and a now sleeping about 18-20 per day.     Now they again changed my dx to SPMS..... and I just am pretty much done with Dr's.

I hope this answers your questions, I am going to look at the ones you mentions.   Thank you for all your work to help me.

Candy

[candy158]

Hi back..... I just looked dat your suggestions for an interferon, and I don't think my Dr's would give that to me, because of depression that I have already, and am being treated for as well.

grrrrrrrrrrrrrrrr, there is always something huh???

[michelleric]

Hi Candy,

Sorry to here about all the frustration with docs/meds.  One thing i want to add:  i was on Copaxone, Tysabri and now am waiting for BG 12? To come out hopefully in March.

My neuro strongly recommends Cell-cept at this point.  I am pretty sure i have moved into a different catogory of MS now,  that is why cellcept was "offered".  I know once the dx is written down, there r problems w insurance covering certain meds.

Anyway, i would ask your neuro if there is any other meds out there that "might" br able to hopefully slow down the disease, even a litte bit.

Hugs,
Michelle