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    #1

    IVIG/SOLUMEDROL Infusions (New Topic)

    Since I was hospitalized in April for what was thought to be a MS relapse. I had extreme muscle weakness, spasms in my neck muscles, left eyelid drooping, which later turned out to be an additional diagnosis, I have been on IVIG/Solumedrol infusions for 5 days in June and then 3 days monthly ever since. In addition to Progressive/Relapsing Multiple Sclerosis, I also have Myasthenia Gravis which was confirmed with the AcTH antibody blood test.

    I haven't been able to take the oral medication Mestinon for the MG as it causes both excess saliva and I amost choke on my own spit or extreme diarrhea. With the MS bowel urgency it is a bad combination. However, I am getting away from my topic. Has anyone here with MS been on the IVIG infusions? I know it is extremely expensive and most insurances will not pay for it for MS. It costs around $13,000. an infusion a day. So all the other MS drugs however expensive do not come close to this one.

    Gabriella
    Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
    Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

    "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon
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    #2
    marc has... look here

    Only registered and activated users can see links., Click Here To Register...

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      #3
      Only registered and activated users can see links., Click Here To Register...

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        #4
        Marc's Blog

        I knew that Marc is on IVIG as I read his blog on a regular basis but thanks for putting the link up and maybe others will start reading it. He is a great writer and really knows how to write an interesting blog. I'll have to get in touch with him and compare results.

        I was hoping someone here on this site has either taken it in the past or is now on it and give some input.

        Gabriella
        Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
        Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

        "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

        Comment

          #5
          Ask for help for payments on I.V.I.G.

          Hi Gabriella,
          It sounds like we have been through alot of the same. I was dx with M.S. about 24 years ago, a lot of up and downs with that. I started to have a very hard time with heavy fatique and weekness more then my normal and having a very hard time swallowing drink and food. I thought I was going down fast with the M.S.

          I went to the Doctors and at first he thought the same as me but then he decided to test mr for M.G., I didn't even know what that was.
          Well, it turned out that yes I also have M.S. and M.G.
          Steriod I.V. made me feel worse. He started me on I.V.I.G. the next day and I felt a little better which gave me hope that we were on the right track.

          This all took place about 7 years ago. I have been on I.V.I.G. once a month since then and thats it except for B-12 shots twice a month.
          I have felth that the I.V.I.G has kept the M.S. and M.G. at a safe place.

          Until the last few months, then my swallowing took a dive worse then ever before. The Doctor put me in the hospital for a very high dose of I.V.I.G. to try and get my swallowing back. That was 2 months ago and I still can't swallow. They put in a peg tube (feeding tube) hopefull I will still get my swallowing back but until then I'll be able to get nutrision and stay hydrated.
          When I was first dx. with M.G. I tryed Mistinon and had the same problems as you are. It just added to my problems but I know alot of peaple say it keeps them strong.


          The I.V.I.G. is very expensive, but has been worth it for me.
          I am on Medicare and they pay I think 80% and I'd have to pay the co payment which I could not afford so I asked my Doctor if they had any programs for hardship cases and they did so they (the Doctors office) sent us the forms to fill out and they said we qualify for help.
          They have excepted the medicare payment alone which means I don't pay a co payment at all. I know how Blessed I am that they are doing this. I would Not be able to afford I.V.I.G. treatments anyother way.
          The insurance should pay for I.V.I.G. as long as you are dx. with M.G.!
          Hope this info helps

          Comment

            #6
            Welcome, Jennierose.

            I'm sure that Gabriella will be very interested in comparing experiences w you.

            Gabriella, Linda (Lazurus) has been on IVIG I think.

            Best to both of you,
            ANN
            There comes a time when silence is betrayal.- MLK

            Comment

              #7
              I took IVIg for 8 years

              [
              Hi
              I took 140g a month for 8 years. That was $70,000-$80,000 each month. I did an all day infusion every other monday.

              It was great. I would shuffle in with weak legs and, 8 hours later, I would go skipping out! We stopped when it was no longer helpful. I had no significant side effects.

              From there we went to novantrone which was also very helpful.

              Good luck.
              Last edited by Lazarus; 09-21-2011, 02:06 PM.
              Linda~~~~

              Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

              Comment

                #8
                Welcome, Welcome, Welcome

                JeannieRose, I was beginning to think no one had ever had MS and MG together. Thank you for posting your experience. I first got sick way back in the late 70's, then got sicker when I had been given the first swine flu shot that was later found to be defective and taken off the market. That shot actually gave a lot of people guillian barre and some died from it. I was working for the government and was told it was a mandatory shot by my supervisor unless I had a letter from a doctor stating I was allergic to eggs!

                I was young and uninformed to say the least! That is ancient history now but I still don't take any flu shots. I did actually get so much sicker that I had to retire on disability. The doctors called it several different names over the years and I did not get sent to a neurologist until 2000 when the MRI with all the periventricular lesions gave me a "definite classic MS dx". The neuro tried me on Avonex but I just got sicker for the 9 months I was on it. He told me I have Progressive/Relapsing which he has since changed to Secondary Progressive so none of the DMD's work for me as the relapse turned out to be MG.

                Medicare is my primary and my retirement secondary GEHA covers the rest. Thank God I had the forthought to keep paying for that insurance as I wouldn't qualify for any now. I'm hoping that the IVIG is going to be a treatment that works for me. The doctor is optimistic that it will. I have tried 3 differents types of mestinon and all of them gave me swallowing problems worse than I've ever had before with the excess saliva choking me. I've had swallowing problems with food getting about half way down and getting stuck for years. When I take any pills I have a banana and take a bite off it to help get the pills to go down.

                Sorry to hear that your swallowing problem has progressed so far that you need the feeding tube. Bless you for posting altho I'm sorry that you are a member of this elite club. MG is considered one of the rare orphan diseases so it doesn't get much funding for research. My neuro only has 2 other patients with it and since it is rare there are not any specialist unless you go to Mayo Clinic.

                Gabriella
                Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                Comment

                  #9
                  Thanks for answering

                  Linda, I am getting 68 gms a day, 3 times a month, at this time along with a solumedrol push. My neuro told me he was going to hit me hard and he did. In June, I had it for 5 days straight, and each infusion lasts 4-5 hours as I have to have a slow drip or I get a horrible headache. It will all be worth it if I get stronger from the treatment.

                  I have progressed with the MS and have to use assistive devices cane, rollator, wheelchair, and power chair. Just depends on the distance and how I feel. I know with Novantrone you can only take so much if my memory serves me correctly. It has an affect on the heart. Is that correct? How are you now? What treatment can you take?

                  Gabriella
                  Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                  Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                  "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

                  Comment

                    #10
                    hi

                    I did all the novantrone I could and then went to rituxan-I think. Hard to remember it all!

                    I had done a monthly steroid infusion 20 years ago and that had worked well for 4 years wen it suddenly stopped working.

                    recently i started it again and again it is helping.

                    I aso started Ampyra and, between the 2, I am having a great renaissance of good health. I have to run now but i will try to watch for any responses yo this thread. My webtv system is having trouble with th new format.

                    Linda
                    Linda~~~~

                    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"..

                    Comment

                      #11
                      I have never done IVIG but I have done alot of IVSM as the MS has affected my brain stem one of its side effects is elevated blood pressure and I mean elevated as high as 260/180 by the second or 3rd day it is down to 150/100 not great but not in the stroke zone either. My kidneys will just quit as well. I have tried just about everything under the sun and this seems like the only thing that works and of course I keep waiting for the IVSM side effects to catch up with me.

                      Comment

                        #12
                        IVSM

                        Gary, I cannot do the amount of Solumedrol (1,000) a day that is given over 3 days as I also have diabetes and have to be in the hospital so they can monitor my sugars and give me insulin. I just know the neuro told me he didn't want to give me the high dosage again.

                        What I am getting with the IVIG is a small amount and primarily to counteract an allergic reaction to the IVIG.

                        Sorry to hear about the BP. That is a very scary number. The highest mine has been was 210/110 and the doctor told me that was stroke level. I had a very bad headache and he would not let me leave until he got it down to normal with medication.

                        That was a time when I was in denial and thought I could get away without any BP meds as I am a type B person. Strokes run in my maternal side of the family and a sudden heart attack killed my father. Take Care, Gabriella
                        Progressive/Relapsing MS, Myasthenia Gravis, Spinal Stenosis, Degenerative Disc Disease, Diabetes, Hypertension, Hashimoto's Thyroiditis
                        Advocate for ADA, Artist's Community for Change, ADAPT, Universal Living in Place, HopeKeepers, Complementary and Alternative Medicine

                        "Life is mostly froth and bubble, two things stand like stone. Kindness in another's trouble, Courage in your own"........Adam Lindsay Gordon

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