Baclofen Pump & IV Solumedrol..Oh My

[slightlybroken]

My diagnosis is moving forward into the possible (MS) phase after 4 years, but would like any personal experience or info from my forum family.

After seeing my neuro yesterday he suggested a Baclofen pump to help control the spasticity. It would be nice to have my spasticity under control, but I have a couple of issues with getting this. First, I'm not technically diagnosed yet and I thought I read that you can no longer get MRIs of the spine after one of these are put in. Am I remembering correctly? Second, I was wondering about how big the pump is and if it's really noticeable (sticking out of the skin). I see the doctor next week about this.

He also wants to start me on a monthly dosage of IV Solumedrol. I think he also mentioned IVIG as well...but wants to start the steroids first. He said that he wants to calm some of my symptoms & flares down. He also said that he could use my reaction to the medicine as a diagnostic tool. If I react the way he presume..He can use this info to help diagnose me. Has anyone heard of IV Solumedrol given once a month..no matter if your in a flare or not...or Has anyone every heard of steroids being used this way? Is this a standard treatment for RRMS or for another type of MS? I start this next week also. I also have to have another VEP.

Thanks

[Khiba]

I cannot really comment on the Steroid infusions, but I can talk about IVIG as I  use it as my DMD, being unable to take copaxone (allergic reaction) or the interferons due to having had breast cancer.

As my Neurologist put it, a subset of MS patients do beautifully on IVIG. It is given in the beginning as a 4 of 5 day infusion then eventually steps over time to 1 day a quarter. I have done very well on it. My MS has barely prgressed and I have not had a flare since starting it.

I go to the infusion studio once every 6 weeks to get juiced. ;) I have friends there and we try to have a party so to speak while there. It takes me 2.5 hours to get infused and then I suffer a few minor side effects for a couple of days, then my energy comes roaring back and I am good to go for another 6 weeks. I can feel it wearing off after about the 4th weeks and am tired the 5th. My body should get used to this and then we will stretch out to every 8 weeks and so forth.

Side effects include feeling sleep for a few days, usually starting the second day after the infusion. Headache that is easily controlled with Advil for maybe 2 days. Somedays its only mild and sometimes its a blasting tension type headache. Everyone reacts differently.

If you get to the IVIG stage, Slightlybroken, give me a shout out and I can tell  you more about it.

Good luck getting settled in for some treatment.

Jessica

[Sumanadevii]

I did not read far enough down to know she wasn't being put on a DMD.  I concur with both you and twopack.  I surely would go for another opinion.  Using steroids for the hell of it without a DMD is crazy thinking.  The DMD is what prevents us from getting worse.  

No I wouldn't do steroids without the DMD and a damn good reason why they were necessary monthly.  Without that they are too DANGEROUS to our bodies.

[essdipity]

If your doctor is prescribing monthly steroid treatments because of fear of side effects from the DMDs, that's plain crazy, IMO.

Hundreds of us here, thousands over the years, have dealt well with the DMDs. Yes, for most there are side efffects, but we learn how to deal with and minimize them. I'm sure you've read lots of these threads.

If you are otherwise eligible for one of them in terms of your disease process, then I urge you to insist on this. You can always try more than one if need be. One at a time, that is.

I agree with Mary that positive reaction to steroids is a strange way of diagnosing, since many conditions respond well. I know you don't want to switch doctors but that might be necessary. Just my opinion.

Good luck with this,
ess

[Sumanadevii]

Had my body continued to tolerate the IVSM, it most certainly did control my MS and allowed me to function.  It only stopped when my gastro track could not tolerate it.  Some are able to use it for years with no problem including their bones.  I just happened to be one that couldn't. Not everyone experiences what I did.

I will say my doctor explained in very plain terms exactly WHY she was going this route in my treatment.  I hope slightlybroken is being told why and it is explained to her complete understanding.  If she is just now being dx, does she have a history of relapes with no remissions?  Is she in a wheelchair now?  

I dunno.  Just questions I would want answered.  And, as always, a second opinion never hurts.

[Sumanadevii]

I have PRMS.  I have been in treatment for exactly one year.  It was thought when I began treatment it might be PPMS since it had been a constant from the beginning of no remitting.  In other words, I had a relapse and never came out from it.

I used IVSM for exactly eleven months.  Two gram..one each day for two days..monthly.  I said many times on this board that without it I would not function.  I was given a substitute for it called Acthar.  While it is very expensive, it did work to a point but not as well.  I am still able to transfer but am unable to do much more.  For me, it was having any quality of life next to being a blob on this earth.  My doctor did all the blood work, etc. and extra of this and that to help me.

And yes, in the end it did help dx me.  We know it is not PPMS because I was able to function using those drugs.  I am NOT able to function without them.

In the end, it is your choice.  I chose quality of life over my damn bones.  I was going to be in a wheelchair anyway without them...How I got there?  Did it really matter?

[slightlybroken]

Mary- Thank you for your input. My neuro explained that he didn't want to use the DMDs as of yet..because of the side affects. He believed that the monthly use of steroids risk would be minimal. The only disease process we discussed was MS, but I did wonder if he's trying to figure out which kind I have. My evidence is not typical (nonspecific lesions), abnormal SSEP, and a new finding of a pale optic disc. The questions that you brought up..I've thought myself..He said his only hope was that the steroids would calm the flares and when it's combined with the complete picture, he could make my diagnosis.

My last neuro said that it looked like, acted like, MS..but would not DX based on my MRIs...She said they would have to change or I would have to add more. With the rate I was adding on walking issues without showing more to the MRI..that was going to be a problem.

Bob- Thank you for looking that up. I wasn't sure if you could have an MRI or not with those pumps. I'm still not sure if I'm ready for that yet..It probably would help, but I might wait when I get really bad before I get that. Thanks Again☺

[COBOB]

Actually, I went back and checked.  The new pumps are rated for 3.0 Tesla magnets but do require a few special precautions.

http://professional.medtronic.com/therapies/intrathecal-baclofen-therapy-for-severe-spasticity/mri-guidelines/index.htm

Bob

[COBOB]

As far as MRIs with the Baclofen Pump, the Medtronics pump is rated for 1.5 Tesla magnets.  You can be imaged, but only at 1.5 T and below.

Bob

[twopack]

I have heard of Solumedrol being used in regular monthly dosing.  Other than that, I'm not sure of specific facts.  I think the doses are a little lower (500mg to one gram) and it is given one or two days at a time (rather than daily for 3-5 days as is usually given to treat a MS flare). I believe this is called pulse therapy but that could apply to more than one kind of use.  

I've also heard of the combined use of IVIG with the Solumedrol but have no personal experience with IV steroids beyond one 5 day course of use last months.  I'm all for treating symptoms and getting people functional but I'd research this too before jumping in.

I read about a trial comparing monthly Acthar Gel (IV) to monthly corticosteroids (IV) soon after I was diagnosed.  It was still in the signing up participants stage at the time.  I don't know if any results are available.

You seem young to start down a course that has many potential perils.  Then again, you've been around here two years longer than me and I have no idea how much your function is impaired.  My memory is poor in general and (I apologize) it is worse regarding your personal story.

I am puzzled that a doctor is more eager to prescribe a regular course of IV steroids than to diagnosis possible MS and try some of the more traditional disease modifiers.  Even more perplexed he would use this to help diagnosis.  It seems there are a number of diseases that respond to steroid therapy, some even more dramatically than MS.  Is there something specific he shared about the change he hopes to see?  Or maybe some reason he can rule out RRMS but is waiting to diagnosis for evidence of a progressive form of MS?

You might check with Sumanadevii if you want an opinion with personal experience behind it.  She had been on every 3-4 week IV steroids to treat aggressive symptoms for over a year.  She recently had to stop because of severe gastric symptoms combined with lack of lasting progress with this regimen.

Sorry I couldn't help more.  I hope the doc has more answers before going too commando with you.
Mary

[slightlybroken]

Thank you Ess. I've been reading as much as I can, and yes, you could say I'm a limboland veteran lol. I need some limboland badges..or something.☺

I was worried about the "once a month" thing too..but I'm afraid treatment options etc..I've not done a lot of reading on...not in depth anyways. I thought I would look at things when "I crossed that bridge". Well, I'm crossing it.

Thanks Again

[essdipity]

Hi, sb. What I know about the baclofen pump is limited to what I've read here. I think a couple of members have them, but for sure Addi does, and she can tell you the details.

Personally I would never go on a monthly steroid regimen, esp. IV. This can play havoc with your bones, inducing osteoporsis. I already have osteopenia, which means a thinning of the bones but not to a bad extent.

Please read up on this carefully before making the decision. The trade-off could be worth it, but only you can decide that.

Another VEP is the good part! I hope you will get a diagnosis of some sort very soon. You're really a limboland veteran, aren't you?

Good luck with everything,
ess