• Anonymous
      October 4, 2012 at 3:46 pm

      Hi everyone! I think I asked something similar a few years ago – but know I am facing hard decisions. I am 47 and diagnosed with CIDP 12 years ago. I am currently stable and SO grateful for a transition to SUBQ a year ago!!!! I posted the details of that switch – so the update is fabulous – changed my life. I still do 27.5 grams of Gammard through 3 infusions each week which I do myself. I have not had a single visit to a doctor in that year. Check up to the Neuro even found a slight reflect in my ankles – first time ever!! Only meds I know take are Cymbalta and blood pressure med. They took away Lyrica after many years due to a severe case of edema. My pain is totally under control. Even have some feeling back in my fingers enough to type a little again.

      Here is the problem – sorry guys! Totally normal OBGYN file – two normal pregnancies and really not even PMS systems over my life. Then at 46 in April I stopped having any cycle. Hubby had a vasectomy so no pregnancy – can you imagine!

      2 weeks ago the OBGYN put me on 10 days of progesterone and as soon as that stopped the flood gates opened and I hemmoraged. 3 trips to the ER and an ultrasounds, blood tests, pelvic exams etc all show my body is actually handling better than most. We decided to avoid a D and C and let my body suffer through this. They put me back on the hormone to control until we come up with a plan. I have great doctors but the OBGYN at a large research hospital admits they have not treated someone with an autoimmune like me.

      The challenge is the choices which are all bad in terms of the CIDP – one impacts the other and vice versa:

      1. hormone replacement therapy to control symptoms – do the hormones reak havoc on the autoimmune? Both the onset of declining levels and the introduction of hormone therapy. Estrogen is a stimulant hormone and progesterone and androgen are the opposite. Which ones and how much? Pills, iud, cream, bio-identical etc???

      2. partial hysterectomy – which parts do you leave – ovaries? cervex?

      3. Full hysterectomy – surgery trauma and post op – then post hormone impacts?

      I have found some good studies on this and Lupus and RA – but nothing in our area.  Most research seems to focus on the onset of autoimmune as a result of any of the three listed above and not for those of us already diagnosed and needing to go through this stage.

      I am looking for experiences – advice – research – referral to anyone that can help!!

      Thanks everyone (PS if you want more info on my SubQ – I would be glad to share as I celebrate my 1 year anniversary!)


    • October 5, 2012 at 11:07 pm

      Hi there- sorry to hear of your difficulties- I had similar issues- I am 46 have 2 children also normal pregnancies – had to stop hormones which I was taking to control bad menstrual migraine due to concerns about estrogen and risk for blood clots from having cidp and also Lupus-  I was having a lot of bleeding and have fibroids as well- I elected to have a uterine ablation- an alternative to hysterectomy- relatively minor procedure – it went well and I am pleased.  My other choice was the Mirena which is a good option for many.  I was just asked at the Mayo clinic for check up of CIDP see Dr Dyck there- asked him about SQ as I get infusion every 10 days now- he says he wants to wait until studies are done- he believes insurance won’t cover in CIDP until studies are done- I would love to switch- how did you get it covered?  Good luck to you and hope my experience helps.

    • Anonymous
      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!

    • October 6, 2012 at 3:46 pm

      Thank you so much for your reply!  I will have to re- explore the SQ option- Dr Dyck did say he thought the formal studies would come out favorably – I also have Aetna insurance so I will look into their formulary for my particular plan- I too get headaches and flu like symptoms from my infusions.  I use 20 grams each time-  I also found your research on progesterone very interesting-  good luck with your decision making and thanks for all the info!