current 3/21/12
I just wanted to deviate from my history for a quick post and give an update on how I am currently doing. I was feeling good in 2009 and we (my Dr & I, not just her) decided to make some changes to my medications, some were good and some not so much.
I know you're probably thinking why change when you felt good? But as people who are on immuno suppressants know, they are bad for you in the long run so the lower the dose the "better" and if you can eventually get off them its even better. I was on 200mg of Cyclosporine daily and like I said I was feeling good, I didn't sleep much but I was ok with that but I developed a tremor in my left hand that I just couldn't take anymore. I was on Propronolol for it & it improved some but after a while it got bad again. So we decreased the Cyclosporine very slowly. like 25mg every 2 weeks so that we weren't giving my system a huge shock. If you have any kind of chronic illness you should know not to shock your system to severely because you can throw yourself into a tail spin.
When I got to 50mg daily I got strep throat and after I got over that my CIDP came out of remission & attacked me. I got weak again & was hospitalized in September & October of 09 so we increased my Cyclosporine back to the 200mg to stabilize me & added IVIG at home through home health. IVIG had been approved for use on CIDP patients which meant I didn't have to fight so hard to get it. The long term effects of it are much better than the long term effects of the Cyclosporine so once I was stabilized again we could decrease the Cyclosporing & switch to IVIG. By July 2010 I needed a mediport because my veins were crap. I didn't want it but it was the best decision I have made in years! Then we started decreasing my Cyclosporine again around October, maybe December, don't exactly remember. I had a friend get VERY sick with migraines in January of 2011 and I was given some misinformation that she was dying and it was very hard to handle. She is one of my 3 BFFs & she has a little boy I adore, so to say I was stressed was an understatement.
One more thing to know it that stress can screw up anyone no matter how healthy you are, but to a chronic illness it is debilitating. At that point I was back down to 50mg Cyclosporine and IVIG every 8 weeks which had to be changed to every 4 weeks. Then in March 2011 my home health company dropped me from their service the day my next infusion was scheduled to start, NO NOTICE just a "you're too healthy for our services" I was already starting a decline in my strength and it took 2 weeks to get a new company to take me on with a new pharmacy. I was using a walker and a raised toilet seat and couldn't leave my house because of the stairs. That nursing company kept me for a few months till my schedule was changed to IVIG 3days every 3 weeks, then they said they didn't have the staff. (well the company didn't tell me my nurse warned me a head of time)
So again rush to find a new nursing company. I must give Crescent Healthcare in Panama City, Fl credit, their whole staff has been great and Eva the director of nursing is AWESOME! They found me a new company within a few days and my Nurse, Donna lives about 20 minutes from me and we get along great. We share common interests, she is a good nurse she takes care of me. I adore her and she is a great help when I'm feeling down.
My Dr and I decided in August 2011 to decrease the Cyclosporine to add CellCept because we had heard good things about it. Well unfortunately it was not great for me. I have been on a steady decline since October and hit rock bottom in February 2012. I needed my walker at all times, I had to get a lift chair, I had to install hand rails on the toilet ( I litterally had a throne!) Again I couldn't leave my house. I told my Dr how bad I was and she added IV steroids to my IVIG and increased it to 4 days every 3 weeks. I just had my 2nd dose with the steroids and we are decreasing the CELLCEPT because it is not working for me and I am begining to" bounce back" Donna has really been a great help, just having another human to interact with is great and the fact that she cares about me means a lot to me. She even likes my little dog! Currently I can leave my house even it it is to just go sit on the deck outside. I need my cane to do so but it is an improvement and I know that by the grace of God and my beloved Dr C. I will get better again.
Ok so that was longer than I planned but you had to know how I got there and back again!
Till next time, Believe in the magic of life
I know you're probably thinking why change when you felt good? But as people who are on immuno suppressants know, they are bad for you in the long run so the lower the dose the "better" and if you can eventually get off them its even better. I was on 200mg of Cyclosporine daily and like I said I was feeling good, I didn't sleep much but I was ok with that but I developed a tremor in my left hand that I just couldn't take anymore. I was on Propronolol for it & it improved some but after a while it got bad again. So we decreased the Cyclosporine very slowly. like 25mg every 2 weeks so that we weren't giving my system a huge shock. If you have any kind of chronic illness you should know not to shock your system to severely because you can throw yourself into a tail spin.
When I got to 50mg daily I got strep throat and after I got over that my CIDP came out of remission & attacked me. I got weak again & was hospitalized in September & October of 09 so we increased my Cyclosporine back to the 200mg to stabilize me & added IVIG at home through home health. IVIG had been approved for use on CIDP patients which meant I didn't have to fight so hard to get it. The long term effects of it are much better than the long term effects of the Cyclosporine so once I was stabilized again we could decrease the Cyclosporing & switch to IVIG. By July 2010 I needed a mediport because my veins were crap. I didn't want it but it was the best decision I have made in years! Then we started decreasing my Cyclosporine again around October, maybe December, don't exactly remember. I had a friend get VERY sick with migraines in January of 2011 and I was given some misinformation that she was dying and it was very hard to handle. She is one of my 3 BFFs & she has a little boy I adore, so to say I was stressed was an understatement.
One more thing to know it that stress can screw up anyone no matter how healthy you are, but to a chronic illness it is debilitating. At that point I was back down to 50mg Cyclosporine and IVIG every 8 weeks which had to be changed to every 4 weeks. Then in March 2011 my home health company dropped me from their service the day my next infusion was scheduled to start, NO NOTICE just a "you're too healthy for our services" I was already starting a decline in my strength and it took 2 weeks to get a new company to take me on with a new pharmacy. I was using a walker and a raised toilet seat and couldn't leave my house because of the stairs. That nursing company kept me for a few months till my schedule was changed to IVIG 3days every 3 weeks, then they said they didn't have the staff. (well the company didn't tell me my nurse warned me a head of time)
So again rush to find a new nursing company. I must give Crescent Healthcare in Panama City, Fl credit, their whole staff has been great and Eva the director of nursing is AWESOME! They found me a new company within a few days and my Nurse, Donna lives about 20 minutes from me and we get along great. We share common interests, she is a good nurse she takes care of me. I adore her and she is a great help when I'm feeling down.
My Dr and I decided in August 2011 to decrease the Cyclosporine to add CellCept because we had heard good things about it. Well unfortunately it was not great for me. I have been on a steady decline since October and hit rock bottom in February 2012. I needed my walker at all times, I had to get a lift chair, I had to install hand rails on the toilet ( I litterally had a throne!) Again I couldn't leave my house. I told my Dr how bad I was and she added IV steroids to my IVIG and increased it to 4 days every 3 weeks. I just had my 2nd dose with the steroids and we are decreasing the CELLCEPT because it is not working for me and I am begining to" bounce back" Donna has really been a great help, just having another human to interact with is great and the fact that she cares about me means a lot to me. She even likes my little dog! Currently I can leave my house even it it is to just go sit on the deck outside. I need my cane to do so but it is an improvement and I know that by the grace of God and my beloved Dr C. I will get better again.
Ok so that was longer than I planned but you had to know how I got there and back again!
Till next time, Believe in the magic of life
Hell, I just found your blog tonight. I was diagnoses in 2010 and am currently taking the prednisone/cellcept cocktail, with periodic IVIG infusions. They helped be bounce back and I seem to be doing alright except for massive fatigue and all sorts of pains. Well, I have nerve damage too so I have to walk wioth ankle-foot orthotics. I am hoping we will continue the med reductions. I am also worried about the long term effects of the prednisone and cellcelpt, but I know that without them, I never would have gotten out of the wheelchair.
ReplyDeletePlease feel free to check out my blog, the link is in my profile.
Michael
Hi Michael,
ReplyDeleteGlad you found me :) My favorite brother's name is Michael, or as I like to call him "god" or St.Michael (family joke) Anyway, I am now down to 250mg of Cellcept daily and by the weekend I will be off it and only on IVIG & Steroids. I am praying it works well for me.