Gilenya and ITB therapy

[SLOW-POKE]

I had a pump implanted three years ago for my spasticity. It has helped tremendously. Since last July I have started on gilenya. Gilenya has been working great for me other than the low back pain which I can tolerate most days. But I have been experiencing having to go back to have my pump dose decrease several times over the course of the last several months. This is a good thing and I feel like it's because the gilenya is working so well for me. I was wondering if anybody else was having this issue. I don't know if there's enough people out there that are taking gilenya and have ITB therapy to justify a study.

[snowy]

Hi Slow-Poke,
I have had my baclofen pump for 1 1/2 yrs. I just started on Gilenya 4wks ago. I have already noticed that I do not have spasms during the day in my legs like I did before starting the Gilenya. I have the pump set to give more med at night for my nighttime legs spasms and also take a med for RLS at night.

I don't know when you take your Gilenya but I take it in the morning. I am going to ask my neuro when I see him in a week if I can take the G at night and stop taking the night time med for my legs. My legs get tired and it makes walking harder during the day.

I have an appointment tomorrow for the pump refill so going to ask the Doctor about decreasing the pump dose and take away the boast that it gives me at night. Maybe the docs won't agree on these things but need to ask.

**post broken into paragraphs for those who have problems reading large blocks of text**

[snowy]

Hi,
I should really add that I really don't know if it's the Gilenya causing less leg spasms as I haven't really been on the med very long. I have only been on it 3 weeks (not 4 like I previously stated. So I have not been on it long. It could be the weather. I see the Dr. today who manages the pump then the Neuro next Monday. He will be able to tell me more.

[SLOW-POKE]

Hi snowy,
in July I will have been on gilenya for one year. Since I started gilenya I have gone from 500 mics per day to 150 mics per day.
In talking to the Dr. who refills my pump they had several patients on gilenya who have had decreases on the pump… So I've about decided that is definitely the reason why we're having decreases. They are talking about pulling the notes together and sending the information to gilenya.
I just haven't been able to talk to any other patients that have had this issue. Just kind of heard about it through my doctor after I brought it up. I am sure glad you responded to my post.
How did your doctors appointment go and your neurologist appointment go? Did they seem to think it was the same thing?
All in all I think this is a great thing however, I would've loved to have started gilenya before I got the pump. I may not have needed it :-) it may take a while but hopefully I'll be out the week myself off of it

[Sara Angela]

One of my friends is on G & has a pump. She has had to go 3 or 4 times to have hers lowered.

I hope to start G in not too long!

Sara

[snowy]

Hi Slow-Poke,
Since my last post I've had off and on spasms during the day.

I did ask my neuro about having less spasms during the day and he said it could be the Gilenya. I haven't been on the Gilenya very long so maybe the spasms will continue to get better, I hope so. I got the pump because I had a hard time bending one of my legs when I walked. The pump has helped that a lot.

The Pump management Dr. said the tone in my legs were about the same so he kept the pump the same. How does your Dr. know how far to turn the pump lower? Does he go by the tone in your legs or by your spastisity?

Sara, Good luck on Gilenya. Hope it goes well for you.

[SLOW-POKE]

Snowy,
I go in and request the dose change due to how I feel. If my legs are heavy and I have problems say rolling over in bed or walking then I have the pump decreased. I also have problems controlling my bladder when the pump dose is too high. I guess it relaxes my muscles too much.

If I am having a lot of spasms and my therapist says my muscles are too tight then I have an increase.

I guess after a period of time you just get used to how your body feels. When I first got the pump I wasn't sure about how I should feel and what should be happening.. Since I've gotten used to the pump I kind of know what needs to be done based on how I am feeling.

Just watch for signs. It's my opinion gilenya works so well I don't need as much baclofen in my system. And from what I understand the pump Dr. to say is she has also had several patients who have started gilenya and have had dose decreases.

Fingers crossed… If gilenya keeps working this well maybe I won't need to this pump.

oh yeah, I take my gilenya in the morning too

[snowy]

Hey Slow-Poke,
Nice talking to someone who has the pump and on Gilenya.

My issue right now is the heaviness in my legs(that was my first symptom before being dx) A few weeks ago I was amazed that I walked a little bit w/o my cane on the uneven ground. I had my husband watch me so in case I would start to fall but I didn't.

But since that the heaviness in my legs prevents me from doing this again and is harder to walk. You said that decreasing the pump helps with the heaviness in your legs since being on Gilenya? Why would lowering the dose help with the heaviness?

After reading that I am wondering if I need to have the pump decreased because I've been on Gilenya now for almost 7 wks. I haven't had my pump dosage changed in quite awhile. Couple weeks ago the Dr. thought my "tone" in the legs felt good to him so didn't change the dose. I still get the nighttime leg spasms but the day time leg spasms have gotten much better.

What is your thought on this since you've been on the Gilenya a lot longer than I have and also have the pump.


Sorry for the questions Slow-Poke. I do appreciate your input on this. The Dr's nurse is suppose to call me back next week on another issue so I'm going to talk to her about this. The only thing is that they are not familiar with Gilenya.

[SLOW-POKE]

I am happy having someone to talk to about this also.

My definition of heaviness in my legs may be different from yours. If your muscles are too tight… Rigid you will have a hard time bending legs because you have to much tone and it's about the same thing when you have too much baclofen. Someone else will be able to bend your legs with no problem at all but they are too heavy for you to actually pick up and do yourself. I do not have a hard time bending my knees or my hips but my legs feel like I have a 10 pound weight on them which makes it hard for me to pick them up and walk.
Do you go to therapy? If so what is your therapist think? Mine laughingly says I have granny legs when my tone is not there. I walk like Frankenstein when I have to much tone.

Do you take oral baclofen too? If so, if you choose to have your pump dose decreased you could always take the oral baclofen to help control spasms. I don't know if I am saying
this right but if I have to much baclofen going into my system. I have no tone and my legs seem heavy. I don't have the strength to pick them up. I've learned the hard way that it is easier to take the oral baclofen than to have to keep going back for decreases. So even if the decrease is not what you need it's better to have not enough than too much. You can always go back to have increased again.

Gilenya is so new to everyone so don't get discouraged if they don't know a lot about it. I guess you'd call it a learning curve… LOL they learn from us.

I have enjoyed you asking questions. It helps us both to learn. LOL maybe we could even teach the doctors something too.

[snowy]

Hi Slow-Poke,
This is my situation. You know how Neuro's ask you to raise your legs while bent, while sitting? That is getting harder to do. I have an exercise that I got from the PT for this. I would stand and raise my legs in bent position. I use to be able go higher than I can now. When I walk my legs feel like I have very heavy weights on them and "skate" when I walk.

I don't go to therapy right now. I am going to talk to the nurse about getting a script to go again. He didn't think that my walking had changed when I saw him last but now it has very much so. It just has been very frustrating because like I told you I walked w/o that cane for a short time.

No, I don't take oral baclofen.
Thank you for your response.

[Sara Angela]

@ Snowy, I had been confused about your tone in your legs commnt. I thought tone was a good thing, but my mom explained there is tone such as spasms. It all makes more sense!

Still in the pre-tests phase!

Sara

[snowy]

Hi Sara,
When I say "tone" I'm talking about the strength in my legs. The Dr. who manages the pump checks my legs then can tell if they are too Loose which would make it harder to walk or if they are too tight which will also make it hard to walk. Before the pump my right leg was so tight that I couldn't bend it. That was the reason that I got the pump. It took awhile the get to the right dosage. I hope I explained this ok. Of course, the Dr. can explain it much better than I can.

I had a really good day yesterday. Today I did well also. My walking was good. I was able to do quite a bit before getting tired. My legs aren't as "heavy".

So, I think I'm going to just see how things go and leave the pump where it's at.

Slow-Poke, Do you ever get in Chat? It would be great to chat about the Gilenya and the pump sometime.
I'm usually in there early evening.

[SLOW-POKE]

@Snowy
yes I go to the chat room sometimes. Haven't been in quite a while though. I will log on tonight and again Tuesday night if I miss you tonight. Look forward to talking to you :-)

[snowy]

Slow-Poke,
I will be in chat tonight (Monday). Looking forward to chatting with you also.

[Sara Angela]

I have enjoyed learning from you! I never thought about the heaviness being from too much Baclofen!
I go back in three weeks for more bloodwork to see if my WBC goes up! I really want to try Gilenya!

Sara