Kimba, or other "pumpsters", I have a question

[rdmc]

Hey guys,

I saw Kimba mention in another thread she had to deal with back/hip pain because even though the intrathecal baclofen could take the pain away, when it was that high she couldn't walk.

I've had a ramping up of my spasticity in the last few months. Hips and my good leg have been over the top. I had the pump upped 10% of my dose (and that was around 22 mcg more added, so I'm up near 245 mcg now) and I did get relief, from the hip spasticity and the leg spasticity. That was about 6 weeks ago, I think, and now the spasticity is starting to show itself again.

I went for over a year without getting any change in my dosage. And now my spasticity isn't behaving at all.

The lower back/hip spasticity pain and ROM impediment is the hardest to deal with, but what I'd like to know is how you knew when to back off the dose of baclofen, because even though it relieved that pain, it was too high a dose.

Did your legs go noodlely on you, did you fall? And Kimba (or anyone else who's experienced this) if I have to leave the Baclofen dose as is in order to walk, and just deal with the back/hip pain...what do you do to cope with that? I know that heat and getting off my feet will take it down rather quickly, but it really limits the amount of time I can be on my feet, maybe 15 minutes at tops.

I've had the MRI, hip, lumbar spine, and absolutely no problems with anything lower back or hips...so all these issues are chalked up to spasticity.

BG, I know you had your dose lowered at one time due to weakness in your upper body, by doing that did it leave other deficits to deal with?

Anybody's experience concerning when to back off the dose, and dealing with spasticity that's left would be appreciated.

[hunterd]

when I got my pump, I got lucky and only needed a few very minor adjustments. Before the adjustments were made ( I was getting too much) my whole body was like a wet noodle.I never had the pain so I will not be able to answer that. But I can tell you that in order to relieve the spasticity, I had to give up my ability to stand and walk (and it was very poor anyway). When I look back at it, I think it was worth it, but that was just me. I was so stiff that it was almost impossible to bend my legs so I could sit in the car.

I knew when to back off my dosage because only my legs are affected by spasticity, so when my arms started to get two weak and rubbery I knew it was time to back down my dosage. And when they lowered my dose, I did not suffer any consequences because of it.

I will be interested in what others say they did to decrease the spasticity also as I believe I am nearing that point.I know that right now I have a lot of pain ( I see the doctor next week about this) and four now I am taking ibuprofen ( it is not working to fully alleviate my pain).

[Kimba22]

Hi rdmc,

Sorry to hear your spasticity has been going up. What does your doctor have to say? I know that there are patients who need a much higher dose to control their spasticity.

My legs turned into "wet noodles" and I could barely stand, much less walk. I needed help just getting to the bathroom. I was not ready to give up the ability to stand or walk, even though my pain was gone.

I have tried other things, like different injections (Botox was one of them). If any did help, it just was just never enough to completely take the pain away from every muscle group affected . I probably could have kept pursuing injections until they were effective, but there was a limit on how often my insurance would pay for them. I have tried powerful pain medications, and have even had one added to the liquid baclofen in my pump (took away the pain, but made me sick). I never liked the side effects of any of them, namely constipation. At certain doses, they also had an affect on my mental clarity.

I try to keep the pain down using cold therapy. For me, it works better than heat. It's never goes away completely, but for the most part, helps keeps the pain at a tolerable level. But I do have pain medication, oral baclofen, and another muscle relaxer on hand I can take when the pain level begins to escalates beyond a certain level. But, I have to be vigilant about not letting it get above a certain number, or else the pain will quickly get out of hand. (Have had more than my share of lectures from the medical community about that. )

For now, this still works, but not as well as it used to. The topic did come up not too long ago with my pain management doctor, who again suggested adding a pain med to my pump. I guess I'll know when I have no other choice but to try that again or significantly up the baclofen in my pump.

Good luck finding what works to help both relieve your spasticity and keep your pain levels manageable.

[rdmc]

Hey Hunterd and Kimba,

Thanks for the replies.

My neuro has had me try PT, then during PT when it wasn't helping, is when the physiatrist, neuro, and I, thought it must be some lumbar problem or damage from a fall...but it wasn't, so the PT sessions started back up to try to alleviate the spasticity. Doing all the stretches and using heat and massage, which does help me, if only temporarily.

I see the neuro today and will ask him, seems like extra baclofen orally, when it gets bad might be the trick. I always take a small dose of oral baclofen due to upper body spasticity.

He might want me to take that up with the physiatrist, we'll see. I love my physiatrist's office, they're my "favorite" doctors (for me, using "favorite and doctor" in the same sentence is probably an oxymoron.

Why it's acting up now, no one knows. It's still HOT here, but I don't go out much. Had the brain MRI a couple months ago and it's stable. So I guess, to quote Richard Cohen, "progressive disease progress."

Use (i.e. the more I use those muscles the tighter they get) or staying in one position too long seems to be the trigger to ramp it up.

My physiatrist says we can keep upping the dose of Baclofen and I will do that. After my last increase, the pain faded and I was back to my "normal" for awhile...that's always a relief because then I don't worry about a leak in the catheter, etc. I had the dye test once, but that was when I'd upped the dosage and had no relief.

Maybe I'll get to a dosage plateau again that I can stay at...happened before, hoping it happens again. Also next refill we're going to a higher concentration so I won't have to have refills as often. My left arm has spasticity too, and it's been acting up, but no pain, just stiffness and it does the "happy dance" whenever it decides to. Glad I'm not in public much

You both answered my question as to how I'll know when the dose is too high. As of now, there's no weakness that I can detect in the legs or hip. Sounds like it's rather clear cut when you get to too high a dosage of baclofen.

Hope you both figure out how to deal with the "extra" pain/spasticity.

[bluegiraffe]

Hi rdmc,
I get what you are dealing with, as we communicated on your other post, before I got my pump I had spasticity and spasms in my legs but then it got really bad with a lot of pain right above my bottom. I was certain I had some type of injury and went through lots of tests too with all coming back fine. Because it got worse with exercise I stopped, thinking I could be hurting things more.

My neuro sent me to a physiatrist who told me it was severe spasticity recommended Botox and PT. Walking was tough but I was still pushing hard. PT even thought it was some kind of injury too.

So fast track some and then I got leg contractures (like hunter, but opposite cannot straighten). Legs so stiff impossible to push knees apart.

Then the pump trial, was so excited to have the pain relieved and my husband could move my legs.

On the lowering of the baclofen dose, it did not affect me negatively and I have stayed with it for quite some time.

It will be interesting to see how you do in the cooler weather. It's cooled down here and it amazing how mush stronger I feel.

Although I'm certain the heat and humidity play a big factor I don't understand why the air conditioning doesn't equal that out.

I sometimes wonder if it's some kind of relapse even though I'm supposedly secondary progressive.

Hope you find answers and get relief. Like we always say the good news is you can change the dose if it doesn't work well.

[rdmc]

Hey, BG,

Even with AC, I still wonder about the heat. I do go to doctor's appts, but other than that my only exposure to heat is letting the dog in and out. Well, I'll cross my fingers and hope the cooler temperatures will help...I should know by Christmas . JK, but there have been many a Christmas when we could wear shorts.

I'm SPMS too, but I wonder about flares, while this was going on I also was having trouble with my CPAP, and they read the data and I was having "gobs" of central apnea problems and I hadn't before. I saw my neuro earlier in the week and recited my list of recent issues, and he shrugged and said, "You have MS". I guess me, being ever the optimist, thinks there must be a fix for everything and sometimes there isn't.

BTW...would you, and others with a pump take a look at the Spasticity forum. There's a new poster named Kylie and she's looking for encouragement about the pump. She's posting to an older thread. She has CP, not MS, but we had been the only forum where she found folks discussing the pump.

thanks.