botox and spasticity question

[502E79]

Just finished my first of 2 annual visits to my neuro and he once again is trying hard to get me to agree to having botox injections every 3 to 4 months to relieve the spasticity in my right arm.

Has anyone had these treatments over at least a year with any success? Any info will help.

My concern is losing "touch" with my limb. I don't see how you can relieve pain, increase movement (but not strength!—his words), without losing some kind of contact with my arm. Neuro actually said that the botox "detaches the pain signals from the muscle to the brain" and when botox wears off —it "reattaches" ???

I am active at gym regardless of pain but must admit it can get trying.

Moderator: I placed this here hoping for some traction, thank you!

Jer

[rdmc]

I have not had Botox used as a treatment for spasticity, I have a Baclofen pump, but that only treats spasticity below the level of the catheter they insert in your back.

Mine is at T9, so it only relieves spasticity from there down.

All that to say, I take a small dose of oral Baclofen about 3 times a day to handle spasticity that is in my upper body. The spasticity isn't that intense in my upper body and the oral baclofen does fine.

As far as the Botox, just remember, if you start it, you can stop it. So if you tried the treatment
and felt like you were losing strength, then you can choose to stop it. I think if it were me, I'd
give it a go, just to see how it worked and stop the treatment if I had concerns. JMO.

[502E79]

Thanks rdmc,

I didn't know that the oral Baclofen would be effective and my doc never recommended it (?).

Any side effects from the oral B? Expensive? 3x daily (or when needed)?

Really hope someone has tried the botox injections and can shed some light.

Thanks again rdmc, for your response!

Jer

[rdmc]

Baclofen's main side effect is drowsiness. I'm "immuned" to it now, LOL. That's why the pump is so much more efficient both in efficacy and in side effects because the Baclofen is delivered right to the spine, thus no side effects like when it's taken orally.

Baclofen comes in 10 mg (smallest dose) and a lot of doctors are flexible as to when the doses are given and how much dosage is need. 80 mg is the top oral dose that is allowed.

There's another med for spasticity called Zanaflex. When I first had spasticity, that's what
I used. Smallest dose was 2 mg, I believe, maybe 4, but my point being, during working
hours I'd opt on the lowest dose and put up with extra spasticity and during a time when I
didn't have to be as "sharp" mentally (some who know me might that issue with that
statement as to whether I was ever sharp mentally ) I'd up the dose.

It's interesting he hasn't offered you the option of one of the anti spasticity med before suggesting botox. Oh well, each dr. has their own preferences.

[90stangg]

I receive botox injections in my left fore arm to ease hand curling. Been getting them for over a year. Was told I would lose a little strength (trying to pull up zipper is a lot of fun) it helps with the hand curling though, and I can tell when it's time to go in for my next injection

[502E79]

Baclofen's main side effect is drowsiness. I'm "immuned" to it now, LOL. That's why the pump is so much more efficient both in efficacy and in side effects because the Baclofen is delivered right to the spine, thus no side effects like when it's taken orally.

Baclofen comes in 10 mg (smallest dose) and a lot of doctors are flexible as to when the doses are given and how much dosage is need. 80 mg is the top oral dose that is allowed.

There's another med for spasticity called Zanaflex. When I first had spasticity, that's what
I used. Smallest dose was 2 mg, I believe, maybe 4, but my point being, during working
hours I'd opt on the lowest dose and put up with extra spasticity and during a time when I
didn't have to be as "sharp" mentally (some who know me might that issue with that
statement as to whether I was ever sharp mentally ) I'd up the dose.

It's interesting he hasn't offered you the option of one of the anti spasticity med before suggesting botox. Oh well, each dr. has their own preferences.

Once again, thanks for the info rdmc. The doc never mentioned any alternative to the shots.

And thanks for the smile regarding "sharp." You seem sharp enough and compassionate, both valuable qualities as we carry on with this disease.

I'm leaning against the shots at this point. Still surprised that no one has been receiving botox shots or willing to comment on them.

Jer

[502E79]

I receive botox injections in my left fore arm to ease hand curling. Been getting them for over a year. Was told I would lose a little strength (trying to pull up zipper is a lot of fun) it helps with the hand curling though, and I can tell when it's time to go in for my next injection

90stanfgg,

Thanks for your comments on these shots. I am usually a "fist." Understand the zipper comment... add to it gloves. I need to open my right with my left and quickly put whatever into my hand, using my left hand. Wears thin.

The loss of strength and the apparent inability to gain strength between shots (from botox web sites) has me leaning away at this point. Exercise to exhaustion helps for a few hours, sometimes longer, so I'll continue until I cannot.

Really appreciate your thoughts / comments. Thank you!

[KattMom]

botox and spasticity question

I’m a 70 year old female. I’ve had ms for 35 yrs, last 3 as secondary progressive. Spasticity problems for 10 yrs. Baclofin pump for 3 yrs. Lost strength and mobility in my right arm and hand many (?) years ago as well as “fisting” and lack of coordination in right hand. Botox in my right arm and hand for over a year.

When I started “losing” my arm I was devastated as I am right handed. My neuro encouraged me to try Botox but I resisted for several years. When I decided to try, the new results were exciting! I can open my fingers and thumb with assistance (and lay flat), occasionally by themselves. I can sometimes grasp and hold with my thumb and index finger. I can occasionally raise my arm to reposition. The most useful is, with assistance, grasping and HOLDING with my hand to help with standing (like with my walker.)

The one downside for me is the Botox effects only last for about two months. I have to wait three months for more injections.
NOTE:
The neuro uses an electronic machine to help locate the correct spot for injection to release the spasticity.
Injections are uncomfortable but not painful.
My neuro does three/four injections for my arm, fingers and thumb.
Could take a few days for the effects to show.

My reccomendation is the same as was mentioned before - try the Botox injections. The procedure is simple. The results could be very helpful. And the effects wear off in two months with no side effects if the results are not what you want .

Good luck. I hope my experiences are helpful.

KattMom

[502E79]

KattMom,

Thanks for responding!

For a while there I was beginning to think that my neurologist was the only one suggesting botox! Or that very few on MSW ever tried it!

My doc did mention the things covered in your NOTE, other than how the shots are targeted. So I feel a bit more confident with your input. I'm PPMS since '16. Honestly never understood RRMS, since there was NEVER a remission... just a slow steady fade from normal (vaguely remember normal), but that didn't stop doc from labeling me RR and pushing the C back in '08.

Well... now the subject is open again, with the only downside being the minor "loss of strength" comments, which apparently comes back as the botox wears off... hopefully !?!

Just like to keep exercising as I now do. I am still capable of grasping and holding weights, bars, poles etc. in gym, slowing losing strength as reps increase with recovery time needed also increasing. Downside: shaking hands is a problem... Just cannot let go (open up hand once it is clasped)! Pretty embarrassing.

Thanks again KattMom!

Jer

[MSLazarus]

I get Botox injections for bladder spasticity

I have had injections only once. The effect was immediately spectacular. It has just started to wear off and it is too soon. So I will see what happens and make a decision. As someone said in a previous response, you can stop the injections at any time.

Sounds like you need to ask your neuro to explain to you why he/she is recommending Botox in place of something else. My assumption is that it depends on the severity of the spasms you are having?? There is usually a reason one medication is helpful and another is ineffective. Call and ask your question. Good luck.

[502E79]

Thanks MSLazarus,

I'm getting an education, at least from those here @ MSW!

Did not know that botox could relieve bladder spasticity although it makes sense. Glad your response to the shot(s?) was so dramatic AND positive.

Still on the fence regarding the shots... I am the worlds lead procrastinator when it comes to any treatment... it's amazing I did daily shots of "C" for about 10 yrs!

Thanks again,

Jer