Reply To: HRT and CIDP

October 6, 2012 at 1:26 am

I just saw my OBGYN today – it took forever. It is so easy for doctors to overlook the big picture and not take the chronic illness into consideration. I did some research on hrt and autoimmune and found quite a few research studies – none with CIDP but I still learned a great deal. It is so important to balance the dosage, needs, and long term impact. I am going to look further into the IUD and a steady dose of progesterone. I actually learned that the peripherial nerves need progesterone to rebuild the myelin sheathing – do running low on this hormone is not good for us.

My neuro at Mayo is Klein. My local neuro actually trained at Mayo under them so it is nice to have that connection. I use the pharmacy Coram – they have handled my home infusions for about 8 years. They were the ones to suggest I try the subq since I was suffering from headaches and struggling with the right dosage. I also live in the middle of the rural dakotas so in the winter it is really easy to get off my IVIG schedule if the nurse can’t get to me or vice versa.

I now have coverage through Aetna and they approved right out of the gate. I have to say that the FDA approved SubQ for CIDP last August – so it should be listed on the insurance forumarly for this condition. If not I would think you could appeal. The only problem I had was that Aetna changed pharmacies rules and wanted me to change to one of their specialty pharmacies instead of Coram but I was able to petition this ruling as Coram handles full care for me for a chronic condition including all the supplies.  I take 27.5 grams a week across three doses – usually Monday, wednesday, friday. It takes about an hour and I use very small subq needles and tubes – either a 3 or 4 needle set. I use lidocaine to numb the spots – usually inner thigh or stomach. I have a small windup freedom pump. Coram sends all the supplies I need. The plasma – gammagard comes in small glass bottles. They stay in the fridge for 3 years or on the counter for 1 year. I can travel – no problem!!  The pharmacy called the doctor and asked for orders and a year later – all is good!