Reply To: Stiffer after IVIG
About weekly I check the Forum. It’s scary that I have learned more about
CIDP than my Neuro. In fairness, the disease if very rare and little is known. One of the current topics seem to be centered around IVig. Most recently I decided after 4+ years of Prednisone plus pain killers as needed, I would try IVig. It seemed that Prednisone was not being as effective. I should mention that before the IVig I was able to walk a short distance without aid, never fell, climbed steps using rail for balance, work in wood shop, climb ladder, was cars. lift moderate weight etc. When any of these things were overdone I would encounter pain. Sometimes bad pain but it would pass after a day or two. It is important to mention that FATIGUE was a constant battle. My Neuro prescribed Adderall, in controlled dosage. It was like getting a new lease on life. I was able to take two pills. One in the Morning and One in the Afternoon. I was not hyper or nervous, but had alertness and energy to do things and quality of life was good. As the medication wore off I would return to that tired, lethargic state.
I tried IVig starting with a 5 day load. I used the new medication called Prevacin with no saline or steroids. I tolerated the infusions well which were administered by a Visiting Nurse. I would recommend a Visiting Nurse. However, after the infusions each evening I was generally incapaticated. After all 5 doses were completed I suffered almost continuous pain and could barely walk for three days. As directed by the Pharmaceutical Brochure. I contacted the Nurse and my Neuro and told that that I was sicker than ever . The disease was exacerbated by the infusion. They made some suggestions regarding hydration and tranquilizer but were puzzled. Out of 21 days after initian load, I had two or three decent days until my 3 week infusion. I completed the three week inusion just recently and was in bad pain that night but relieved in the morning. I am not the same person that began these treatments. I am weaker, more fatigued, and easily in pain. At this point I do not plan to go any further. I had to incur the out of pocket expense which is obscene but had to at least try. Regardless of the outcome the my continuance would have been prohibitive.
I am now working with my Neuro to pursue the previous method with possible with some new medications, but also introducing Pain Management (medical and mental) and treatment for Anxiety which brings on the pain.
HOWEVER, since we are all different, I would recommend that if your budget permitted you should consider this option a try. It appears to work for a number of people and I seem to be the exception. GOOD LUCK AND BE BLESSED BY THAT WHICH YOU BELIEVE IN.
Acceptance 76 (a/k/a Bill F)