Hi there! I have been thinking about you often during the forum blackout period! I had such a similar experience- The challenge with cidp is it is literally like trying to shoot a moving target- only when the inflammation/ demylenation is blocked can your nerves start to heal and many things affect the balance of healing/ damage. I myself am recovering from a cold and my usual 10 day interval of ivig does not seem to be relieving my symptoms as much as usual. I was told by Dr Dyck at the Mayo that getting things under control and relapse free is essential before backing off of dose of ivig- I was on weekly ivig for about one year and then added an immunosupressant ( Azothioprene or Imuran in my case) to try to allow for extending interval between IVIG. So far it has worked but I definitely have times when I am stronger and less paresthesias/ fasciculations. I would advise you see if you can get a more frequent IVIG if you can swing it as you are still not stabilized. My neurologist has always taken the approach of getting me to normal or as near normal function as possible – your current symptom burden is really not an acceptable outcome esp when you are not on optimal treatment yet. Good luck and hope you are feeling better soon!!

I am sorry to hear of your troubles! I had been on once weekly ivig for abut one year, and due to continued relapses started Imuran daily – I have been able to go to every 10 day IVIG but not past that. I share your feelings about being so dependent but the flip side is that it is helping to control my symptoms and I am grateful for that. I tried cellcept , but was unable to tolerate due to side effects. Hope you feel better soon.

I am glad you are home! Rest up and hope you get answers soon!

Wow – that sounds great! I am rather new to posting to the forum although I have been dx with CIDP for 3 years. I am currently on every 10 day IVIG infusions and have the same side effects that you have. I feel like I am tethered to the infusion center and definitely feel best the few days after my infusion with a slow decline until my next infusion. My concern with SQ infusion is skin issues but is sounds as if you are tolerating it well and you are spending about 2.5 per week infusing is that right? does it matter which days of the week you are doing it or is there some flexibility ? For example, if you have plans on a sq infusion day/night can you easily move to the next day? can you do 2 days in a row or is this difficult for skin? How often do you have to rotate sites? sorry for the barrage of questions! This is so appealing and so far my local neurologist and the Mayo have not recommended it. Thanks so much for letting us know how you are doing and putting up with my questions!

Hi Bny806- I hope that when you read this you will be feeling better- I am sorry to hear about your troubles but agree wholeheartedly with replies to your most recent post. I to had clinical aseptic meningitis ( they did not repeat the LP) and am able to receive IVIG safely every week to 10 days. I also agree with waiting until your studies are all in . Do you by any chance suffer from migraine headaches? If so, your risk of headaches with IVIG is much higher and slow rate is more important. Persons with migraine can also have small lesions on MRI. I hope you feel better and get the answers you need to move on to an effective and tolerable treatment!

I am so glad you are getting help! Sorry that you had to get worse though- Same thing happened to me- I started loading dose as well and I got weaker until second or third loading dose then things started to turn around quick. How are you tolerating the IVIG? Slow rate helps alot if you are having side effects. Wishing you a speedy recovery

I am so sorry for your suffering- if you are declining and getting worse I would get on the phone to see if they want to do a trial of ivig – It will not change results of biopsy or other tests so should not affect your diagnositic process-when I was first hosptalized it was friday pm on a holiday weekend but I got the treatment I needed. I am very concerned about your shortness of breath and chest symptoms and would get those checked out for sure- I would think that that alone might merit a visit to the doctor or emergency room to rule out pneumonia, pleurisy ( which can be autoimmune) or respiratory muscle weakness from neurologic cause- these can all be treated but if untreated can lead to a real emergency- do you have good support at home with family members and or friends?

Ah the plot thickens! When I was first diagnosed with CIDP my ANA was negative although I had other autoimmune issues. Now my ANA is highly positive 1:2000 range. I also have raynauds and some joint pains, fatigue, etc. Lupus ( one cause of many that can cause positive ANA) can cause a peripheral neuropathy in itself or it can be simply an associated condition. People that get autoimmune stuff are at higher risk of getting other autoimmune stuff. There are other more specific antibody tests they can run to help sort things out. If you have not yet seen a rheumatologist , I recommend you do so. It is good to coordinate care. I know how scary all of this is especially as you are working toward a diagnosis just keep in mind that autoimmune conditions including CIDP are considered treatable and most patients are living their lives and doing well.