IVIG starts tomorrow
 

I am being weaned off pregnisone. When the dose got down to 25mg a day, all my MG symptoms came back at their worst. I start IVIG tomorrow. I hope this helps. I feel barely functional. I want a thymectomy more than ever. I am not sure if they will operate when my MG is so bad. Wish me luck.

kathie

May I ask why you continue with the pred taper even though the symptoms have appeared again? Were you having bad effects from the steroids?

Hope the IVIG helps. Please remember that MG frequently requires more than one ongoing treatment. Having 4 meds going for MG at once is not unheard of (mestinon, pred, ivig and other immune suppressor).

Keep looking for answers! Hang in there!

Because of the severe side effects of pregnisone, my neuro only sees it as a short term solution (6 months) until he gets some other treatment working. It took 2 month to get IVIG approved.

I agree with his philosphy. Pregnosone was very effective for my MG but it gave me severe insomnia, not good when MG is only relieved by rest. I also have bruises form the pregnisone, it raises blood pressure, sugar and cholesterol. And now my back goes clickidy clack when I move. It also causes osteoporosis, another condition I already have severely. All the side effect are also hightened by mild hypothyroidism which has the same symptoms that still has not reached a therapeutic level.

I pray for thymectomy and going to push for one at my next visit in July.
thanks
kathie

Cait best if wishes for the IVIG. I just finished a 5 day series 2 weeks ago (2g/kg). Be sure to stay hydrated and let the infusion nurse if you start to feel any side effects ("a little funny"), that's a sign to adjust the rate they infuse the IVIG at, everyone's different and does have a infusion rate that works for them. Faster is not better.

As this was my first series I did not know what to expect but the process went well, it can and does make you tired though a day or so of rest helps with that. Be aware of the signs of any post infusion complications, ask the nurse for a list.

I ran into one of the complications this past week with a very rare reaction in that one of the antigens attacked my red blood cells causing me to be quite anemic, my red blood cell count dropped by 50%. The symptoms are a very intense fatigue (worse than MG) especially while walking and I had dark urine. To help I did get a transfusion of 2 units of red blood cells.

I'm only mentoning this as a point of note as I found little information on complications and the infusion center gave me no warnings on what to watch out for. Reactions overall are quite rare but can show up several days later like this did for me.

On a good note it has had a absolutely wonderful affect on my MG...I feel the best I have in a very long time.

Best of wishes :)

Joe