CIDP and MS equals CCPD? Me too.

Hi! Once again I have been a slacker and have not shared my happy news. So sorry! My Hizentra came two weeks ago on Saturday and I tackled it like a champ! It was new to me in that I am using 4 needles now and twice the medication. I have to load three large syringes for the pump and keep an eye on them to know when to switch them out. Why doesn’t someone come up with pre-loaded syringes? How about some sort of alarm on the pump that tells me that it is time to change the syringe? Maybe I can invent that. Meanwhile, I am just thrilled to have the ability to do it myself wherever and whenever I want to! This is all somewhat of a learning experience. Twice the amount of medicine means twice the amount of fluid hanging out under my skin and waiting to be absorbed. I did all four needles in what I call my pooch, which caused me to have a much larger pooch for a few days. I kept loose clothing on while it was absorbed. I am waiting for the day when someone asks this gray haired girl if she is pregnant! Hahaha. Everything went well and I had an AMAZING amount of energy the next day! I had NO idea how drained I had been feeling until that Hizentra started kicking in! Wow. No negative side effects at all. I drank tons of water and took Benadryl and Tylenol out of habit. I also put Oregano Oil on my temples to try to keep the headaches away.

The next Thursday I had my Ocrevus infusion, which I do for my MS every six months. This is a MUCH longer infusion that I go to an infusion center for. I had forgotten how they were. I took my Benadryl by IV, Tylenol, oregano oil on the temples, antacid, steroids by IV, drank caffeine via coffee, a Powerade Zero and tons and tons of water. That is my concoction for a successful Ocrevus infusion. I am not a doctor, but with reading and listening and several infusions later, this works for me. While this was a long infusion and I was hit with some crazy exhaustion after, I had no other negative side effects at all. The hardest part about the whole thing is the number of times that I had to get up to go to the restroom since my Botox is wearing off in my bladder! Getting out of that comfy lazy boy, unplugging the infusion machine and lugging the pole and all to the restroom over and over to the bathroom makes it difficult to get a good nap in! Ever notice how your blood pressure goes up when you have to go to the bathroom really bad? Hahaha! That is fun to watch when they come take your temp and blood pressure regularly throughout the infusion. Ocrevus infusion complete! Thank you for keeping my MS calm!

I wondered if I would be able to do both infusions in one day. I chose not to even try. I kinda wanted to do my Hizentra a little bit early to see if it would get rid of the rest of my symptoms, but I decided to wait until Saturday. That morning, I brought all of my gear to work to see if I could do it there. I wore leggings, a black shirt with a kangaroo pouch and a big black sweater and cute black booties. Who would know? Not a soul. I hooked myself up with the needles in my pooch again when I was clocked out for lunch with my office door closed. The pump went right in my kangaroo pouch and my sweater covered up whatever tubing was not concealed. The pump is silent. As each syringe ran out, I shut my door for a minute and swapped them out! I shut the pump off and left the needles in a little extra to try to prevent any leaking or medicine from getting on my skin. One more time I closed the office door to take the needles out and slap on some bandaids and I was done! No one had any idea what was going on under my clothes while I was still working! Now you do, but that is why I write this thing. Maybe someone will read this and realize that life can go on around this small obstacle in life. Once again I had zero negative side effects. I also think that wearing firm hold leggings made the infusion go a bit slower, but there was less of a pooch. I also have really upped my water intake and that might be helping my body absorb the Hizentra faster. I am curious what other people have figured out. No one really tells us anything once we are on our own. I guess I could do this twice a week with half the dose and just 2 needles. If anyone is reading this and has any experience, please share!

It is Wednesday after my second, higher dose of Hizentra and a recent Ocrevus infusion. I feel good! Not quite to where I was when I got out of the hospital last June, but getting better. I have a feeling that my hands are going to be a challenge. Folding laundry the other day was a non stop feeling of electricity shocks in them. I am thankful that my feet and legs are back to where they were. I am thankful for my cat that proudly brought me a dead mouse to my feet yesterday. Good job, baby! ❤️🐾🐈

Happy news! Reaching out to my doctor worked! While I would have never started out by contacting him, it is something that needed to be done. He was able to schedule and complete a peer to peer last night and guess what? Hizentra is APPROVED! This morning the rep from the specialty pharmacy and I got things rolling. Their patient assistance program is helping me with my deductible and even set up a program to cover me just in case I should ever lose my insurance. Supplies were arranged and ordered. Everything will be delivered tomorrow! I can do my Hizentra infusion when I get home from work. If I had listened to the medical assistant, I would have waited until Monday for my doctor to be back in the office. Very rare diseases like CIDP cannot wait for a young medical assistant that decides that you are not important enough. Woo hoo! This is a great day! Happy Valentines Day everyone!

Thank you to everyone that likes my page and follows me through this journey. I am hoping to meet more people that have MS and CIDP. I also hope that by telling my story, maybe I am helping someone.

I woke up this morning and started crying. I tried to pet my dogs and I couldn't really feel the like I used to. My hands were somewhat rigid and the electric shocks were more than I could take to move my fingers to scratch their little heads and bellies. I looked through my texts and emails to see if anyone had responded yet. No responses. I finally decided to just text my practitioner. There was always a possibility that he hadn't been kept informed by his nurse since he was out of the office all week. I have been in this situation with one of his nurses before. I hate to bother him this way until I feel like I have no choice. I won't bore you with all of the details, but after overcoming the statements that were made to me that were clearly said by someone that was not informed, he agreed to try to get a peer to peer TODAY. Not too much later I got an email from his nurse saying that she knew that I had talked to him today and the she was working on getting the peer to peer requested. Clearly she is not pleased with me. That is what she gets for lying to him about when she found out about the denial for the Hizentra and whatever else she might have said.

I also heard from the specialty pharmacy rep that had helped me with the PA. She said that I could use her pharmacy as they were approved by my insurance. I sent her a copy of the letter from CVS so she would know how they were trying to tell me otherwise. They can make their profit off someone else. Did anyone else hear today that their PROFIT last year was 6.6 BILLION. They don't need me.

I picked up another round of high dose steroids and I am going to go to bed early. The Hizentra will get here eventually!

I haven’t posted in a few days probably mostly due to frustration. On Monday I called my insurance to check on the prior authorizations for both Hizentra and Ocrevus. Good news first? Ocrevus was approved for my two treatments this year! Yay! Bad news? Hizentra was declined. They said that they wanted me to use and fail with IVIg before switching to a subQ. Well, I have already done that. My mind was wondering if that was included in the PA or not? Who didn’t do their job? I called my specialty pharmacy rep and she is out of town in a meeting until Thursday and will work on it then. I sent an email and left a voicemail for my doctors office. I get nothing. Tuesday comes and I finally get an email from the nurse that my practitioner is out of the office until next Monday and she will try to get him to set up a peer to peer then. I explained that the health insurance said that they could send in a statement about my medical history with IVIg (failure per se) and they would review it and I would get a response in about 48 hours. I gave her the words needed. One would think that she could help me since I NEED immunoglobulin since my symptoms are coming back. Nope. I got home from work and there was a snail mail from IngenioRx stating that I had to use them as my specialty pharmacy. My heart sank, I put it to the side and decided to look into it today. Today I left another voicemail for the nurse asking her to call. She never did. I checked with my health insurance and yes, I have to use this pharmacy owned by CVS. Now I had to let my doctors office know and I have to let down my kind specialty pharmacy rep after all she has done for me. She will have to triage all that she has done to this new specialty pharmacy. I got the name of my new rep, left him a message and never heard back from him. I sent a text to the old specialty rep and I didn’t hear back from her. So now I am home and it is almost 2 weeks since my last Hizentra infusion and no one will help me. It is killing me, but do I change doctors now? Am I expecting too much?

As an added disappointment, my nurse said that the doctor suggested a port since my veins are difficult to stick. Why on earth would I do that if Hizentra works and Ocrevus is only twice a year? Will someone help me understand that? Is he still trying to keep me from using Hizentra? Does he still want me to take a day off from work every 3 weeks to get IVIg when I don’t need to?

That’s enough for today. I am working myself up. What would be happening if I wasn’t chasing everyone down? Would I be bed ridden?

Just a quick update! I did my 4th and final Hizentra infusion last Friday from the free sample program that CSL Behring gave me. Since then my insurance has changed on February 1st and I have to get everything approved all over again! Since I have had to go through Prior Authorizations so many times, I was prepared. I had my doctors office ready to handle both Ocrevus and Hizentra. My infusion center had the order ready from my doctor to submit on Monday. The specialty pharmacy rep was ready to do her part with Hizentra. On Tuesday I checked in with everyone. The infusion center had submitted their paperwork. The specialty pharmacy rep was driving to my doctors office to get a signature from my doctor for dose clarification. Amazing how being your own advocate can make things happen! Today I decided to check in with my insurance and spoke with a great lady. She looked everything up for me and gave me the reference numbers and told me that both were up for review and I would know by 2/20/20. That is almost two weeks away from now! I was supposed to have the Ocrevus yesterday and the Hizentra today. I told her that if I had to wait that long, I would be costing the insurance a trip to the emergency room and I would probably be admitted. She immediately changed them to urgent and I should know in 72 hours! The moral of the story is to never sit back and wait when it comes to your health. You have to be your own advocate and make sure that things are getting done. I even asked how I would find out the results since my last insurance mailed everything. She said they would mail it to me, but fax my doctor. Good information to know. That means that I have to call back in 72 hours and follow up myself unless I hear otherwise.

Today I had a wonderful call with a patient advocate for Hizentra! I won’t share her name or her story, but it was great to actually speak on the phone with someone else that has CIDP. CSL Behring has a Voice2Voice program where you are able to speak with others that have CIDP and use Hizentra also. How great it was to ask where she did her injections and how long it takes for her infusion to be absorbed into her body. She told me about some of her experiences and I told her about mine. I learned from her and I think I actually taught her a thing or two. I told her about InvisibleDisabilities.org and how they got the “I” symbol on the driver’s licenses in Alaska to signal to the police that the driver has an invisible disease and that the way the driver is acting might have to do with their illness instead of whatever intoxication or other idea that they might be thinking. She was so positive and upbeat and encouraging. I can’t wait to be able to get the higher dose in February and feel better. I don’t feel horrible by any means, but I’d like to think that I can get back to where I was with the IVIg every three weeks. Meanwhile I am contemplating where I am going to stick myself with those needles on Friday!

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Hi! Here is my latest update. My Hizentra dose is not strong enough so I am progressively getting my CIDP symptoms back. The pain and electrical shocks in my hands caused me to investigate. I didn’t want to give up the Hizentra and have to go back to IVIg infusions at an infusion center every three weeks. I was able to find out that there is a higher dose and my neuro will let me try it. He called in a round of high dose steroids to tide me over for a bit. They have actually helped me a lot. The free month of Hizentra will last one more dose next Friday. I have to mention that I did my Hizentra completely on my own yesterday! Success! Since my insurance changes on February 1, I cannot get the higher dose until after that. I have everyone set to get to work on the prior authorization and ordering, etc. I hope that I can get it fairly quickly!!! They will also be working on getting my Ocrevus approved for my MS. That infusion is scheduled in the beginning of February too. It is a constant battle trying to keep everything organized and moving forward, but isn’t it worth it? I get to experience new things like my cat learning how to use the doorknob to open the doors in the house! ❤️🐾

I did it!!! All by myself with the nurse watching, I did my own Hizentra infusion. Not only did I do it myself, but once again I didn’t have any skin irritation and the tingling/stinging was much less as the infusion was going. There is no bruising or soreness. I can just clearly see the fluid that is under my skin that my body will absorb.

I guess I will learn which injection sites work better than others for me. I have to be able to reach them and see them for the most part. I look forward to hearing from others about what works for them.

I am completely on my own next week! I can do it!

Today is my second Hizentra infusion!!! I think that I get to do all of it myself. Is it strange that I am excited and can not wait to stick those needles in me?

Hizentra SUCCESS! The nurse met me in the afternoon and guided me through my first Hizentra infusion. I had watched a couple YouTube videos and read quite a bit so I was aware of what was about to happen. She did most of it this time, but I am certain that I can do it with her just watching next time! The first time we used 4 needles and a slow infusion. The actual infusion time was a little over an hour and 15 minutes. We were together for about 2 hours from start to finish. She had paperwork to go over with me and she spent time explaining everything to me. We decided to use my abdomen for all four needles. It did not hurt at all when she poked those needles in! When the pump started, I felt a mild stinging sensation around all four needles. It lasted through most of the infusion, but subsided toward the end. It was a slightly itchy feeling. I could see the Hizentra “puddling” under my skin. It will take a while for my body to absorb it. I had no reaction whatsoever on my skin. No redness. No side effects. Nothing bad at all! I will add that I took Benadryl and Tylenol one hour before just in case and I drank a TON of water. No one told me to do that, but I always did that plus more with my IVIg to avoid the migraines that I would get.

This morning there are still puddles under my skin. I slept really well. My only concern was one completely due to vanity. How do I cover the extra pooch in my belly when going to work? Hahaha! I managed a loose blouse over pants that don’t squeeze that area. All is good! I am SO happy that this worked out so well. Thank you once again to CSL Behring for making my life so much easier with Hizentra! (I am not paid by them to say any of this. I am truly thankful.)

Today is the day that I start Hizentra! The nurse is meeting with me this afternoon to show me how to hook myself up with 4 needles! I am so excited!

It has been 3 weeks and 3 days since my last IVIg so I am having symptoms coming back. The sharp electrical surges in my hands are back today. I have had trouble sleeping with the tingling electricity going from my fingers to my shoulders for the last few nights. My hands are pretty numb and clumsy also. I know that this is a lower dose than what I have gotten through IVIg so we will see how it makes me feel both in the side effects and eliminating my annoying CIDP symptoms.

Thanks to CSL Behring for giving me a free month to try! It falls at the most opportune time since I have a new max out of pocket of $8150 this month and a new insurance starting on February 1, which will bring another max out of pocket. If I can avoid my most expensive MS and CIDP medications in January, my wallet will be thankful.

Here I come Hizentra! I am working on getting prior authorization for Hizentra for my CIDP. IVIg helps me, but going to an infusion center every few weeks and trying to keep a job too is very difficult! I also had three veins blown out last week when trying to get my IVIg. Maybe I can do this at home and and not have to deal with explaining the bruises all over the backs of my hands anymore!

Okay....I have something to add to my long post from yesterday. Today I got a call from my infusion center apologizing over and over that they had submitted the prior authorization to my insurance for the four week interval when they received it and didn’t realize that the order that came the following day was for every three weeks. They never sent it in. That is why my approval is for every four weeks. They have to resubmit everything to my insurance for the correct time frame. They did that today and put urgent on it. I called my guy at my insurance to ask him to watch for it and try to get it submitted as urgent. If it doesn’t go through quickly I won’t be able to get my IVIg infusion on Thursday. On Thursday it will be five weeks since my last one. My balance was really bad this morning and my hands just don’t really work well. I pray that this will all get sorted out and that one infusion will be enough to get me back in shape. Just when you think all is good.....

I just have to remind myself to be thankful and that it could be much worse.

I apologize for not posting anything in a very long time. I have been trying to figure everything out. I now know that stress causes spasticity in my legs at night, which makes it difficult to start walking in the morning. What is really causing me difficulty is the CIDP in my fingers, hands, arms and up around to my shoulder blades. I have been getting IVIg once a month or every 4 weeks since I started. My last time was on October 3. When I go and get the infusion, it has usually been enough to make me feel good for up to 10 days, but that has gotten shorter each time. I attempted to make my appointment for 4 weeks later, but Cigna wouldn’t let me have 2 infusions in October. Lesson learned. The practitioner needs to write the order in weeks rather than months. When I went to my practitioner on October 10, my CIDP was coming back and I wouldn’t have another infusion until November. I asked him if I was supposed to be on this roller coaster and he said no. He decided that we would go to every 3 weeks to see if it was enough. His nurse was supposed to work on this right away. I was even told how she spends her efforts on helping the patients, which I personally questioned. On October 23, I had not heard from anyone regarding my infusions. The next day would be the 3 weeks that I was supposed to go back. I didn’t know who to call, so I decided to call Cigna first. I got the BEST guy in the world there. He gave me his direct number and said that my case would be the focus of his attention since NOTHING had been submitted to Cigna yet from the doctors office. He had me on hold while he called the office and had to leave a message for the NURSE. I also called the office and had to leave a message for the nurse. I also directly texted my practitioner. Nothing. I emailed the next day and expressed my concerns. I ended up on high dose steroids for 4 days, which did help some. Finally the nurse submitted the order to the place where I get the infusions and submitted the paperwork for the PA. Meanwhile my hands and forearms are raging with electricity and numbness and I cannot hold anything and it just hurts to do anything with my hands. Just picking up my coffee cup felt so heavy from the weakness. My guy at Cigna was on it for me. He got it submitted and I had to wait for the approval. He couldn’t actually see the order, but one came and was submitted. If I didn’t have him and wasn’t persistent myself, I wouldn’t have known that it was approved on the 28th. I would have had to wait for the USPostal Service to let me know. I called the infusion place and had to contact a few different people in their offices to finally get one that helped me figure out what was happening. They had an order for every FOUR weeks and NOT 3! Cigna had a request for every FOUR weeks and NOT 3! I about lost it. I wasn’t sure what to do next. I texted my practitioner and told him. He actually responded immediately. He agreed that it was supposed to be every 3 weeks and said that he would look into it. I have heard nothing back yet about that. I tried to schedule an earlier infusion, but cannot do it. They have to order the IVIg and didn’t have an opening for me. With all of the time, effort and stress, I am still going 5 weeks in between my infusions. Am I going to have to fight for the next 3 weeks to get the next one? Is this what we have to do to get treatment for CIDP? Do I have to get to the point where I can handle work and need to rest and stay in bed when I am not working? This FOUR week PA is only through the end of the year too. New Year, new insurance, new battle?

Okay, I feel a little bit better mentally since I vented. The stress all month has not helped with the spasticity in my legs with my MS. I try to just be thankful for the days that I can stand and walk. Holding things in my hands is something that I cannot do very well. I dropped my 7 day pill box on the floor twice this morning and had to find all of the pills on the floor and sort them out and put them in the correct spots again. I need to get one where the days lock shut, but I can still open them. That is on my to do list!

May all of us have a better November than I had in October!

Today I still have those strange burning feelings in my feet and ankles, but it has diminished since yesterday. Maybe I need to come home and lay down and sleep when these feelings start moving up my legs. I am still figuring this out! It is completely new to me. After my last incident that landed me in the hospital, all I did was lay down for days while I got my IVIg infusions and steroids. I was off from work today so I have taken it easy. I had an appointment with my urologist this morning to check in and decide when my next procedure will be. Hurray for MS and the bladder issues that come with it! I went to check on my neighbor's pets while she is out of town. I sat at the kitchen table there for a couple of hours and worked on a project. While I was resting on my bed later and looking at Facebook, I saw an urgent need at the Humane Society. The electricity went out at the shelter and it is in the 90's today and so very hot! They needed people to come and take an animal for the night. So here I am with an 8 week old kitten named Tigger! He brings joy to my heart as I see him exploring and playing. I am glad that I could do some good today!

I was released from the hospital on June 5, 2019. All of my CIDP burning sensations, tingling, etc. was gone and I only hand the permanent numbness from my MS. I stayed at home for 6 days before returning to my light duty job. I stand up the entire time that I am at work as we are not allowed to sit down. The stress level was particularly high. After two days back to work, the sensations came back in my hands/wrists/arms. I was beyond upset. I have been dealing with it while my neurologist is trying to get Cigna to approve the necessary IVIg infusions monthly. In this day of technology, Cigna still MAILS requests for more information to my doctor. They mailed something on 6/26/19 requesting test results to prove that I needed it. Last week? I only found this out after the burning sensations came back in my feet/ankles/legs. I called Cigna to see what was taking so long. When I got to this point last time, the sensations moved up my legs pretty quickly to the point where it felt like I had no ankles and my balance/stability was greatly compromised. I had to go to the emergency room and I was admitted pretty quickly for six days.

I am at home waiting to hear back from my neurologist and nurse. I am trying not to get upset. At work today, I met this amazing man in a wheelchair. I was talking to him for a while and he actually play tennis from his wheelchair and coaches too! I told him that I was worried that I would end up in a chair, but that he was an inspiration. I can't even play tennis on my feet!

I wish that I had people to talk to that have CIDP. I will meet them someday. In the mean time, I will fumble my way through this and figure out how to keep it from getting in my way!

Hi! I am Sara and I have had Multiple Sclerosis (MS) for many years. Recently I was also diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). I had MS under control, but this was anew and very scary thing for me! I have searched for information on this disease and find that there is very little when compared to MS. There is even less for those of us that have both MS and CIDP. There is actually a term for it called Combined Central and Peripheral Demyelination (CCPD). I created this page to try to attract people that are experiencing what I am. I hope that we can help each other out and share successes or favorite doctors or whatever we can to support each other. Please like my page and share with others that may find it helpful!