progressive

[Neworleanslady]

as of today my dr officially upgraded me to primary progressive. And is switching me from baclofen to gabapentin. Are any of you taking gabapentin? What do you think of it? Any side effects?

[Graip76]

Ive been taking gabapentin for a couple of years now. Started off at 300 mgs at night and built up to 1500 daily. No side effects for me. The key to success with gabapentin is to increase VERY SLOWLY otherwise you’re going to feel like you’re in a coma. My advice is to increase every 3-5 days and only one time a day preferably starting at night. Obviously it takes awhile bc you’re increasing slowly but in the long run it’s worth it. God bless!😊

[Neworleanslady in reply to Graip76]

why were u originally prescribed it? I’m having big time ‘sore muscle’ pain that I’ve been taking baclofen for 3 times a day that helped with the pain but I can’t walk or other things because the baclofen weakened me a lot. I’m not sure the dosage she prescribed me,(ima go pick it up in a little bit) but I’m pretty sure she prescribed 3x per day 1-2 pills. If it does well but i think i need more i can take up to 2 pills at a time. But again, I don’t remember or know the dosage she has prescribed per pill yet. Thanks for your reply!

[Graip76 in reply to Neworleanslady]

I was having muscle pain and Baclofen did nothing for me except make me sleepy. I was taking too much tylenol so my doctor prescribed the gabapentin. I also experienced muscle spasms at night occasionally which went away after taking the gabapentin. I now take 500 x3 daily. Hopefully this answers your question. 😉

[Neworleanslady in reply to Graip76]

She did mention that it increased fatigue at higher doses than what she prescribed me

[Irishgirl76]

Happy veterans week and ☺️ thanksgiving to all! We have much to celebrate and much to be concerned 😧. I am glad to share my experience about primary ms but I do read about both medications and wonder why more information and side affects are not discussed more in the medical profession. Doctors,pharmacist need to be more conscious of providing truth and not the$$$. I have spent many years researching my own symptoms and pain / finding the care team makes me hopeful 😇

[Kenu in reply to Irishgirl76]

I’m very fortunate both of my neurologist specializes in MS and one has written a couple books. Both are very knowledgeable about the many drug’s and there side effects. I’ve been very happy with them over the last 28 years since diagnosed 👍🏼😉

[mrsmike]

I've been on gabapentin for 9 years with no side effects.

[Neworleanslady in reply to mrsmike]

Thanks for your reply!

[Jesselespaul]

Good morning - There are many discussions about Gabapentin on the board. I'd give it a search. Polarizing opinions to put it mildly. In my experience it is mind bending - not for me. I respect any other opinions as all MS meds but this drug obliterates me in the most confusing way. I wish you the best as we travel down this common road....

[Neworleanslady in reply to Jesselespaul]

Thanks for your reply!

[ArtisticSpider]

Hi!! I’ve been on Gabapentin/Neurontin for 20 years…unfortunately.🤪

I started out with a low dose, but due to pain, (have a laundry list of chronic illnesses along with PP MS—but I’m still walking!! And falling, breaking bones….but walking!!). the pain clinic took me up to 3900 mgs a day…I did that for a while and I was able to function well, but I have slowly decreased to only taking 1600mgs a day. I think it helps, but being on so many medications at once—who knows!!

I have had weight gain since my dose was high, and I’d like to blame the medicine, but maybe it was too many potato chips?!? Lol

Like the other person said…there are definite polarizing opinions. Some say a small dose makes them sleepy, others say it causes weight gain and others function fine on it. It depends on the person and what other meds you are taking in combination with the gabapentin. My advice would be to try it out and if you are noticing any strange symptoms, discuss it with your doctor or pharmacist. Best of Luck to you!! 🥰

[Tazmanian]

Why primary progressive and not secondary progressive?

[Neworleanslady]

she could’ve said secondary i don’t remember

[Cutefreckles72]

Hi Neworleanslady, I have PPMS, and I take 600mg of Gabapentin 2 times a day. So, for I haven't had any side effects. I take one in the morning and one at night to help me sleep. It does slow the pain down.

[Neworleanslady in reply to Cutefreckles72]

thank you! I just took my 1st one at 645 pm. I waited till evening in case it gets me tired (MORE tired!🤣). It’s 100mg. Prescribed 1-2 pills 3x per day

[MsBoo]

I was up to 3 600mg cap 3 times a day.. I was more dizzy and sleeping most of the day and night. Now after "stepping down" I am at 1 pill morning and night.. and this has improved my balance and sleeping my days away..

Am glad for the decrease for the obvious reasons.

[Neworleanslady]

wow that does seem luke a lot! How is your pain after decreasing MsBoo? Has anyone tried taking only a little, but throughout the dau? Like 100mg every 3-4 hours?

[ROGERMRAC]

I had been taking gab and was up to 16 pills a day with nothing switched to 1 225mg lyrica abd after 8 years it is till working. Lyrica is specify made to go after nerve pain. Gab can work on nerve pain but not always. If you are taking that much you may need to switch to lyrica

[Neworleanslady]

ill have to look into that

[Fancy59 CommunityAmbassador]

Hi it's fancy 59. I've been on the rotten for years and have had no side effects whatsoever. It is supposed to help with pain. I notice it helps especially with the ting in my hands and my feet. In fact on days that I orget to take it the tingling in my hands and feet become painful.

[Neworleanslady in reply to Fancy59]

thank you- good information

[carolek572 CommunityAmbassador]

Yes,  Neworleanslady , I take gabapentin and baclofen. I was taking gabapentin 300 mg, up to three times, daily, to keep the migraines at bay. That wasn’t working that well after 5 years. But I did notice that if I took it at the sign of a headache, along with Tylenol, that it worked. So I take it as needed. I haven’t noticed any side effects. I also take baclofen, 5 mcg, as needed, but only at night for my left leg spasms. It does work but I have noticed that if I take too much, my muscles feel like they are as strong as wet speghetti (If that makes sense).

[Neworleanslady in reply to carolek572]

thanks for your reply. I feel stronger but i do still have slight sore muscle neck and shoulder pain. Although it is better than it was. I scheduled a massage for next week!!

[mrsmike9]

How are you feeling about the new "title"? Is it bothering you or are you rolling with it?

[Neworleanslady]

I’m kinda just rolling with it. I’d been getting SO bad with wslking and fatigue, I couldn’t think of anything else but getting thru the day. I’d told my doctor on this portal thru which we communicate (it’s awesome, and they get back to me right away) anyway I’d told her how bad i felt and she scheduled me for a virtual visit the very next day!

Anyhow that’s when she changed my meds (to gabapentin)and she just talked about progressive ms, i guess she didn’t actually say i have a new official dx. But actually, i stopped baclofen a couple of days ago and i feel 100 times stronger (maybe 50-60x stronger). I feel a tad sleepy with this gabapentin, but I’m hoping that’ll go away with time. I went to 2 grocery stores today!! I haven’t been able to do that in a long time! So if my walking gets stronger, i might be able to do more! Idk, maybe wishful thinking-

I apologize for this super long answer to your very thoughtful question. Thanks for your concern!

[Neworleanslady]

thanks for the info! I feel a little tired with the gabapentin but your post helps me to feel that that will go away.

[Koalagreen]

I don’t know . Sorry.

[sweethunnie]

I actually took them both at the same time many years ago during my early diagnosis of RRMS. I was taking other medications as well so I was very sleepy. I'm not sure which medicine or combination made me fall asleep sitting in church or even sitting on the couch.

[Neworleanslady in reply to sweethunnie]

uugghh. I hate having to take so many medications

[BlanketTime1]

do you not have spasticity? that's the only reason i could see her/him doing an either/or scenario. i take both because i have nerve pain (gabapentin) and spasticity (baclofen).

[Neworleanslady in reply to BlanketTime1]

I have some mild spasticity in my ankles and legs when they’re at rest that i still had with the baclofen. I have pain in my neck and shoulders that does not necessarily subside too much with gabapentin or baclofen.

[BlanketTime1 in reply to Neworleanslady]

got it. i hope the spasticity stays mild.🤗