All Journal Entries Journals
Previous | Next

IVSM so far..so good

Oct 10, 2011 - 4 comments

Today I'm going for my 4th infusion of IVSM. I'm happy to report that everything is going pretty good so far with the monthly IV Solu Medrol infusions (pulse therapy). I have noticed a certain trend though with this therapy. The steroids do help, and it also seems that my medications work better when I'm on the steroids, rather than when I'm not taking them, however when it gets close to another dosage for IVSM (1-2 weeks before another dosage)...I start to have issues again. It seems like all the symptoms rush back within weeks and I slowly revert back, almost like I never had the steroids.

This past week I had a new symptom pop up that scared me a little. I started to have issues with swallowing. I started to choke on things. Needless to say, I had to make sure everything was chewed up pretty good. It was messing with the left side of my throat..which is my bad side. After a few days of dealing with this...I started to have horrible spasticity in my neck. It felt as if someone was squeezing my neck and choking me. The muscles were tight. I would have trouble turning my neck. I had to add extra meds to help out because it was even effect my vocal chords. I'm not sure what was going on, but I'm going to bring it to my doctor's attention.

I hope that I can get an official DX soon. I know he is building a case..but I'm so tired. I'm also dropping weight like crazy.

I had a horrible allergic reaction to hair dye last month too...which was really strange since I use to be a beautician. My head blistered and oozed from the scalp...and the itching...God..the itching. My Mom seems to think it would have been a serious reaction since I had steroids on board..maybe even landed me in the hospital. It has taken a full month just to get over the rash. I definitely won't do that again.



Comments
Post a Comment
1394601 tn?1328032308
by Sumanadevii, Oct 10, 2011
I had about the same reaction to monthly steroids as you are having.  At first it was fine but a week before I would crash hard and once again all the symptoms came back.  So, we tried every three weeks rather than every four.  I began to have horrid heartburn along with swallowing problems.  Most my food was baby foods and I did not have the weight to lose.  I know for a fact it was steroids because at the end when we stopped them, we tried Acthar Gel.  During this time period and break from the IVSM the swallowing problem stopped.  However, the gel was not strong enough and landed me in the hospital  where immediately I was put on IVSM again.  The trouble swallowing followed immediately.

I do know I was dx this past June with PRMS.  One of the things they do understand about PRMS is that steroids help.  If it were PPMS steroids do nothing.  Of course, ya gotta add that I kept relapsing with no remitting and other things to come to that dx...Just sharing my experience.

279234 tn?1363105249
by slightlybroken, Oct 11, 2011
Thanks for sharing your experience with the pulse therapy. I don't know too many people on it. I do love feeling better when the steroids is on board, but I do wish it would last longer.

I have spasticity 24-7, along with the weakness. I think those two symptoms are the far worse ones. They never go away. I also have pain involved from the spasticity. I did noticed for several days after the IVSM I get horrible achy limbs (the ones that are the worse effected by spasticity. They will ache for days, but then after the ache is gone I can generally start to move the limbs when they wouldn't move to certain points...for example, my leg won't lift from a sitting position. ...after the IVSM, I get the achiness for 3-4 days, then I will begin to lift the leg. It's not a normal lift, but it's at least something.

I've wondered if I have a progressive course of MS, and maybe this is why the neuros have had such a hard time diagnosing me..but I'm not sure.

The one thing I'm confused about though..and if you could clarify I would appreciate it...You say steroids do nothing for PPMS..but I have read several articles that pulse therapy is used as a treatment option for PPMS and a friend who has PPMS was offered IVSM pulse therapy at the NYU MS Clinic for treament.

1394601 tn?1328032308
by Sumanadevii, Oct 11, 2011
Well, I am no doctor but PPMS is characterized by nerve degreneration rather than inflammation.  IVSM treats inflmmation.  At least that is my understanding. That I know of there are no drugs approved for treating PPMS.  I know they are given medications like muscle relaxers, etc to treat symtoms.

Here is the National Multiple Sclerosis website that explains treatment for PPMS

http://www.nationalmssociety.org/about-multiple-sclerosis/progressive-ms/primary-progressive-ms/how-ppms-is-treated/index.aspx

1394601 tn?1328032308
by Sumanadevii, Oct 11, 2011
slightly,

Please read what Julie has to say on the board...Her last post on the thread entitled "Any word on Julie?  I hope she is doing better".  She talks about having some of the same reactions as you and why.



Post a Comment