Finished last IVIg infusion today- some random thoughts

General General CIDP Discussion
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I am now 6 months and 30 infusions into my IVIg journey. Now it is wait and see, as I have my follow-up Neuro visit at the end of the month. I am concerned, as any progress or improvement seems to be minimal at best. I'm not sure if IVIg will be continued, or will a new treatment be rx'ed.

I am still taken back how quickly my CIDP morphed from being basically symptom free for 7 years to signifcant demylination and acute denervation with numbness and fatique in my feet and calves.

For those who are contemplating Home infusions, here is my fresh take.

It was not my first choice, but a financial choice for me. Through the medical side on my health insurance plan, it was going to cost me $10,000 out of pocket to meet my deductables ($5000 for oct -Dec infusions, then another $5000 out of pocket for a new calender year, Jan- Mar infusions)

But I found I also had a Caremark Pharmacy plan, and IVIg was covered under their Specialty Pharmacy Progam, so I get it for $85. a month. However, you have to use their Home care service. The is included in the price. I found this service was available on my own, even my UHC advocate did not inform me that it was an option. The deck is stacked against us folks, IMHO.

I had two nurses that saw me, the first nurse's contract expired after the first month, and she chose not to renew, so I was assigned a new nurse for the next 5 months. She did a very good job, was prompt,outgoing, and was experienced. I had no complaints, other than she had a hard time getting an IV in. I finally went with a port. Not sure if this was bad veins on my part, or she was not good with inserting IV's. Actually, if you are going to need ongoing IVIg, the port is the way to go.

The biggest downside I see to Home Health is nurse turnover. They sign up for 17 weeks at a time, and can choose not to renew. So you may not have the same nurse on an ongoing basis.My nurse was stressed out because they were stretching her out among so many patients, she felt they were understaffed.

Sorry for being so long winded, to much time cooped up this week.

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Congratulations on finishing that IVIG marathon! I remember when you were researching ways to reduce your financial pain, and I'm so glad that you persisted and were able to find a way of getting what you needed at a price you could afford.

The nursing situation sounds like it's definitely less than ideal. Pay them as little as possible, work them hard as you can, and if they quit, hire someone else. But I guess it's a business model that works for them, even if it's hard on the people at the service end of the supply chain.

Glad to hear from you again, ML!

Seenie

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Thanks Seenie. Overall the in home experience has a lot going for it.The comfort of your own home and surroundings, no travel to and from the infusion center, plus my dog faithfully sits next to me and naps with me. My wife and I call her nurse Gracie.
The concern of course is having a stable, experienced nurse that you are comfortable with. I was pleased with mine, but she is taking a job in Washington state starting in april, so if I continue my IVIg, I will get a different nurse. That is a cause for concern.

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Congrats on finishing your treatment!!! Definitely an accomplishment. Sorry to hear that you had issues with your home health care.

I have been doing home infusions since August, and the company that I have is the "bomb". They communicate so well, I have 4 cell phone numbers I can call or text at any time. I have never had an issue with an IV getting started. I have had the same nurse continuously, and she has been doing this for 13 years. The manager of the office is extremely knowledgeable and knows her job inside-out. Nothing has ever been mentioned to me about signing up for such a short time.

I know there are several home health care plans for home infusion, and I am extremely thankful and feel bless for the one that was assigned to me. I believe I would pick it any time over having to go to a facility or hospital, plus the cost is soooo much better, and I am in the comfort of my own home. I sure wish I was getting ready to see the light at then end of the tunnel for ending my infusions, but I only began in August. I wish you the best, and much wellness to come.

I remember when I joined this group, you were one of the first ones that welcomed me.

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Hi Rocket. Glad to hear that you have such a good situation with your nurse and Home healthcare. It really is a blessing to be able to get the infusions in the comfort of your own home. Much less stressful. If I have to continue with IVIg, I will continue to do so at home.

How many infusions do you have left? Do you take them monthly? I hope you are seeing improvement, and it proves to be effective for you. I am like you ,I look forward to the end of the infusions. I hope that time comes quickly for you.

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I began August 28, 2015, getting every 3 weeks. Insurance has approved 27 treatments so far. I missed 3 infusions because insurance had to approve new med since neuro changed me from Privigen to Bivigam, along with Solu-medrol due to having a bad reaction with a rash. I, my neuro and physical therapist was seeing improvement until treatment was halted. Neuro told me 2 weeks ago he thinks I have been set back to about October with the assessment he done due to having to wait on insurance approval for new meds.

Best of luck, and hope things stay well for you!! Hope no infusions in the future for you also.
Making lemonade said:

Hi Rocket. Glad to hear that you have such a good situation with your nurse and Home healthcare. It really is a blessing to be able to get the infusions in the comfort of your own home. Much less stressful. If I have to continue with IVIg, I will continue to do so at home.

How many infusions do you have left? Do you take them monthly? I hope you are seeing improvement, and it proves to be effective for you. I am like you ,I look forward to the end of the infusions. I hope that time comes quickly for you.

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Interesting discussion. I have been diagnosed with very mild CIDP, or maybe it's related to the mild GBS I had in May 2014, or maybe I just have neuropathy - I've had several opinions, as you can see. When my previously unaffected hands started burning last July, I decided to start IVIG with the Doctor who diagnosed CIDP. I had a great provider and great nurse. I've had IVIG almost monthly since last August. Because of spreading numbness, the Doctor raised my dose from 3 days 35g to 4 days to see if that helped. I got that in December and numbness did seem to improve. But after the new year, Insurance decided that they know better than my doctor because 4 days @35g is more than the standard dose, so they only approved 26g per day, which is less than I was getting over 3 days! Insurance then decided everyone had to use their preferred IVIG provider. I was worried and really upset (Isn't it enough just to be going through this disease and not have to argue with insurance too?) But I got my delivery yesterday for home treatment tomorrow and everything seems to be there. And best of all, they work with my nurse's company. Numbness comes and goes so I THINK IVIG is helping but it's really based on how I feel day to day since it's mostly sensory for me. I'm hoping for a day for infusions to end, but who knows at this point. I dream of someday waking up without pain, squeezing, and numbness and hope tomorrow's treatment will help my squeezy legs settle down and stop the Novocaine-like numbness that's spreading across my face as I write this. Thanks for listening!

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Jeanne, I hope the IvIg continues to help you improve, and the pain and numbness subside. I hate that novocanie feeling. That is how my feet feel. Hang in there and keep fighting.

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To lemonade, I just had my first infusion Tuesday, and through our health plan it’s costing us an amount similar to yours, yeouch. We to have Caremark and I will findout Monday the cost through them. It IS frustrating that we have to do research while being ill. I hope our cost will be less through Caremark, but if nothing else, your post shows the importance of being involved in searching all options, or getting someone to help you if you can. I hope your, and everyone here’s, health improves.

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I was switched to SCIG from IVIG by my Nuerologist which I can do at home by myself. IVIG gave me horrible rashes and lesions. SCIG is great and not difficult to do. Has anyone here been offered this? It is considered off label but my insurance covers it and I believe they prefer it because it’s cheaper then having to go to an oncology department.

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Hey Sean, I did a quick search to see what our members had to say about SCIG in previous discussions. You can do the same using the search icon, but this is what I came across:

Maybe there is some helpful information here?

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I get my IVIG at home also. Get gammaguard. Great nurse and pharmacy and Dr. Infusions have helped me tremendously. I feel blessed. Get the infusions every 5 1/2 weeks. I have CiDP. Been getting them for a few years now

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