Which Symptom Meds Have Helped You The Most? The Least?
 

There are a lot of different medications to help alleviate the symptoms of MS.

Which ones have helped you the most? Which ones have not helped at all or caused too many side effects to be considered helpful?

LDN and SSRIs have helped me the most.

LDN keeps me feeling strong and well and I believe has slowed/stopped the progression of my MS.

Paxil, Buspar and Prozac have taken away the pain of anxiety and depression.

Avonex may have stopped my exacerbations for the 1/2 year I was on it, but it made me so sick, it didn't matter.

Copaxone did nothing to slow the progression of dissability. So stopped after 10 months.

How about you Kelly?

Hi.. Great question Kitty...
Hope others will share their experience....
I have not had my spinal tap yet .... so still learning..

Detrol!!!!!! Who knows, I may have ended up having that problem anyway but it wasn't stress inconitence like a lot of 'mature' women have, it was urge incontinence which I think is more MS. And my Elavil and klonipen for all my leg symptoms like hot, tingly, restless especially at bedtime

After I was diagnosed in '00 I took Avonex for 3 years. After that I did the lifetime dose of Novantrone. The symptoms that drove me to seek medical help are still around just barely, except the fatigue that comes from physical exertion. Even that is much relieved since beginning chiropractic care.

Is the Avonex and Novantrone the reason I'm in good shape and very active? There is absolutely no way to know.

For day-to-day symptoms I take:

1. Escitalopram (generic Lexapro) for PBA (Pseudobulbar Affect). If I miss a few days worth I will cry for no reason.
2. Baclofen, 20 mgs 3 or 4 x a day, for spasticity. It used to work alone but eventually had to add:
3. Diazepam (generic Valium), 2mgs 3 x a day. If I miss even 1 dose of this combo I'll wake up with leg cramps or not be able to move until after a full-body seize-up.
4. Ampyra helps me walk. It's nothing I really notice but I can tell when I've missed a dose or 2. My legs will feel very heavy again.

I have some bladder leakage, and the rare bowel incontinence, but not enough to add to the pill pack.

Detrol and Vesicare did not wow me with my kind of Urine incontinence but Oxtbutynin (increase capacity of bladder, not decreases spasms which was not my problem) really worked. Everyone is so different. Provigil had an adverse effect on me (opposite) and made me more tired, Amantadine helps some. Hydro/Acetamine does nothing but Valium knocks me off my feet into unconsciousness!

What a great topic thread!

On the most effective side:

Baclofen for management of spasm, pain and sleep disturbance has been the most beneficial for me.

Diclofenac topical anti-inflammatory lotion has been the most beneficial, with the fewest side effects for control of swelling and pain in localized areas (joints, muscles and tendons.) I use it when any of these areas have become inflamed, injured or strained due to injuries, falls, severe spasticity etc.

LDN has basically given me back my cognitive function, reduced fatigue and taken the edge off of most other symptoms.


On the least effective side:

These mostly have to do with producing side effects so severe for me, so as to strike using them (at least regularly or over the long term) off the list of possibilities. It is worth mentioning that there are also other inflammatory and metabolic conditions present besides MS in my case.

- Steroids (IV or oral) causes digestive dysfunction (malabsorption, cramping) and liver function to take a life threatening dive in short order
- OTC anti-inflammatory medications cause digestive tract dysfunction as well as liver stress and bleeding problems after about the 4th dose

With love, Erika

Most effective at taking away tingling, pain and sharp shooting things; Lyrica.
Most effective for side effects of vague, dizzy hangover feeling; lyrica.

The only med I take specifically for MS symptoms is Baclofen. I take one tablet before bed so my legs won't keep me awake. Sometimes I'll take one during the day if the spasticity worsens. Usually I can ignore it as long as I'm not trying to fall asleep.

I also take Aleve for any other pain......MS related or not.

Probably the least effective was Provigil. I never could find a good time of day to take it, and it gave me nightmares. Plus I wasn't impressed with its efficacy in keeping me alert. I told me neuro, never mind, I'll have a dose of diet coke if I need to be alert. Or at least alert-er.

Nuvigil killed my appetite and I lost 5 pounds in a week. Rebif did ok. Gilenya helped with the balance and reduced fatigue. Provigil doesn't seem to increase or decrease fatigue. Gabapentin reduced my balance and I fell more than usual. I've only had 2 Tysabari infusions so the jury is still out.

I take baclofen for spasms and amitriptyline for break thru pain and sleep. I was taking baclofen 20mg a day and then had to increase it to 40mg a day, and now Im at 40mg 3 times a day. Sapsms are just not being controlled well anymore. I take a 50mg amitriptyline at bedtime everynite. Neuro said he would give me something for the tremors, but Im not big on pills, wont even take vitamins, so I said no. Maybe if the pain increases, more pills will appeal to me.

Most effective: Nabilone - for pain, hands down
Clonazepam - also for pain (burning mouth syndrome, very small dose works for me)

Least effective: I could give a laundry list of all the anti-convulsants, anti-depressants, misc. medications I tried along the way thus far for symptom management, but there's so many I won't even get started lol.
Copaxone - Not into a 30% (if even) *chance* of MAYBE slowing progression. :rolleyes: Not into designer drugs or filling the big pharmas pockets. Nor did I enjoy the nasty side effects.

Klonopin, Propanalol, and Magnesium. Klonopin reduces burning and electric sensation to very low (small dose). Propanalol keeps heart at a nice rate and regular (not necessarily an MS symptom). Magnesium stops leg jerks and spasms at least 95 % but I must have it every day. EVERY DAY. Over the years added B1 and Vitamin E complex to magnesium to further reduce jerks and spasms (myoclonus).

Bad pills for me? Baclofen, Zanaflex, all anti-depressants, many more.

I haven't been impressed by the bladder medicines I've tried: Ornade, Detrol, Ditropan, Vesicare. I liked Vesicare better than the others but all of them cause mouth dryness that would wake me up several times a night.

I have had some good experiences with Soma (carisoprodol) for muscle spasticity.

1 effective one i take is vesicare. i actually bought a steamer machine for the bathroom i was missing so much during the nite. now i can make it ok.

i'd have to say copaxone is a plus. it might just be my disease process, however, i havn't had a flare or much progression (have to knock wood) and i've been on it since '03.

not much has helped my pain. my muscles hurt so much and baclofen hasn't helped. zanaflex helped a bit more but had to stop because i'm on a heart med for AFib and it can cause a deadly rhythm disturbance.

Mariel, Would that be Magnesium Oxide that you take? If so, how many mg per day? Also, were you having heart palpatations?

Thanks

I take generic Lexapro 10 mg which keeps my mood level, trazodone 75 mg helps me to have a good night's sleep and lowers pain levels. I still take .625 mg of estrogen and refuse to stop because I fear old symptoms coming back that I had right after my hysterectomy. Adderall XR 10mg generic helps me tremendously with fatigue and concentration.

Here is the meds I take:
Betaseron
Celexa
Baclofen
Requip
Ativan

Not sure if the Betaseron has helped me or not. Only NOT taking it would tell me.
Celexa has helped me stay happy
Baclofen I take twice a day but I'm not sure if it works for me all that great
Requip for Restless Legs.......awesome stuff
Ativan.....even more awesome stuff. I have a very frequent sense of being off balance and this stuff helps me with that. I take the lowest dose (.05) only as needed.

I used to take Provigil when I was working and wouldn't have made it through the last two years of employment without it.

I don't have much that I am taking, but here goes:
Rebif for the last 7 months which is helping the disease but ruining my life
X-strength Tylenol to mildly relieve side effects
2.5 mg. oxycodone occasionally for foot pain/burning
Super b complex daily which has temendously helped my mood (but not enough)
I was on copaxone for 14 years.
I tried provigil, and I will probably try it again.
I tried numerous anti depressants, but only for a couple of days...couldn't get out of bed.
Effexor helped, but not with rebif
I really appreciate the info that all of your experiences are providing.
And I love your quote, Karilann!

I started on Betaseron and thought it was great! The MD thought it was really banging on my sx and we were all happy till I had a blood test that showed my liver enzymes were so high they wanted to admit me. Eeek! :eek:

went to Copaxone and while it took forever to get a foot hold on my disease the next 3 years showed that it really did help keep things stable. Year 4 rolled around and I felt awful! I couldnt think, I couldnt function, I was sliding downhill so fast. Kept telling the MD it was the Copaxone and they kept telling me it was anxiety. I took a 2 week break and was amazed at how quickly I started to feel better, think better, act better, and was starting to be part of my own life again. MD told me it was psychosomatic but I didnt care what it was called, I just wanted my life back. I dropped the needle.

Ativan has been my friend. it has helpe to control my anxiety, my hug, my attitude, my over stimulus response to grocery stores and crowds. In flare I switch over to klonopin for that extra bump and its a miracle, but I dont want to stay on it.

Diet more than anything has helped me feel better. It has not cured my MS but it has really helped my sx. My highs were not as high. my lows were not as low. I have more energy. I have more clarity and strength.

good thread!