August 19, 2019 at 4:42 pm #117095
I was recently diagnosed with CIPD, just last week and my neurologist ordered IVIG. Now it looks like I may not be able to get that treatment due to the shortage. He may want to go with Steroids.
Anybody know what infusion centers don’t have a shortage in California Bay Area?
Anybody have OK experiences with steroids? Should I really push for IVIG, or go with steroids because its available now.
August 19, 2019 at 5:56 pm #117096David TuckParticipant
That is a great question! I will answer as a clinical pharmacist and then as a patient. The first question is what will be most available without interruption. Steroids have been shown to be effective for CIDP, however you will have to see if you tolerate side effects of fluid retention, mood swings, potential sleeplessness, nightmares, and possible nausea. IVIG and Plasmaphoresis are other options. However you have to deal with inconvenience of administration and time for infusions. IVIG tends to have side effects as well that in many cases are tolerable but include hypotension, headache, dizziness, and allergic reactions. Hydration helps minimize the headache and your infusion nurse will have medications to help counteract any adverse effects. The IVIG shortage occurs various times each year and my understanding is that shortage is coming to an end. I have been receiving Gammagard for over 2 years and had to receive two cycles of Gammunex C until the Gammagard came available 3 weeks ago. As a patient I have done well with IVIG and never opted for the steroid option secondary to another autoimmune disease I have and did not want it flair once off steroids. Everyone responds differently to the various therapies and the ideal one for you has yet to be determined. IVIG for me greatly reduces my fatigue and provides “spring” to my step. Unfortunately none of the therapies, for the most part cause muscle atrophy and loss to return. The best therapy has been 60 min of cardiovascular work via elliptical or recumbent bike 5-6 days a week along with a trainer 3 days a week for an hour to adapt other muscle groups to adapt for the deficit from loss of other muscle groups. That has been my experience, and IVIG has been the best option for me. Best of success on whatever path you choose. Despite the disease wants one to sit and do nothing the reality is exercise and muscle adaption energizes you and will keep you walking longer. After 2 years I have progressed to use an AFO for foot drop due to loss of dorsal flexion (inability to pull feet up and use of trekking poles for longer hikes/walks wherebtwrrain is constantly changing to help my balance. Hope this is helpful.
August 19, 2019 at 6:55 pm #117097
Thanks so much for your input David.
Starting PT in a few weeks, I would have started it weeks ago, but waiting a time with patience for my turn.
In the meantime, I do have a recumbent exercise bike, which I’ve been dabbling with. My symptoms are primarily leg weakness, foot drop, numb feeling in toes when I’m on my feet for a while and pain in my legs. Still walking, but not far, it hurts. I’m finding that days after I peddle the exercise bike, pain increases. Neuro said movement is better than not, so I’m increasing my time on the bike incrementally, despite increased pain. Up to 15 minutes a day now.
Hoping to make a full court press, whatever treatment I can get, preferably IVIG I think and physio-therapy and diet, and whatever else I can do to improve my overall health. Also awaiting appointment with dietician to see what, if any, diet is best for my situation.
Thanks again, Micah
August 19, 2019 at 8:50 pm #117098David TuckParticipant
I think PT is great, however, I would encourage you to hire a trainer at your local gym. One that has credentials and perhaps degrees in kinesiology or related degrees. They will be the ideal person to make sure you are changing routines every month to challenge other muscle groups in different ways and help to use the equipment properly to achieve proper working of the muscles and keep your form straight to avoid injury. This has proven to be an ideal situation over the past 10 years I have dealt with CIDP in my life.
August 20, 2019 at 9:03 am #117102chirpybirdyParticipant
Not all brands of IVIG have shortage issues. Maybe he can order one of the other brand named IVIG that isn’t experiencing a shortage. I was diagnosed 10 years ago with CIDP. My neuro tried steroids as the first line of treatment. I hated the side effects! I was angry all the time, unable to sleep, jittery, and other weird side effects I won’t go into. So she took me off steroids and started IVIG at an infusion center. I have been on IVIG now for 10 years and don’t have any side effects from my infusions except a little fatigue the day after. I am able to get my infusions at home with a nurse that comes to my house. My hope is to remain on IVIG for a long time to come, but I have told myself that if for any reason I can’t stay on IVIG as my treatment I would NEVER go back on the steroids. I will try other options such as immune suppressants before ever going back on steroids. I also hear that steroids long-term cause a lot of major,messed up problems in your body that are permanent. So I would push for IVIG or other options before getting stuck on steroids. That is just my personal opinion due to my misery caused by steroids. Others might have not had the issues I had on steroids. Good luck.
August 29, 2019 at 9:20 pm #117117cer100Participant
Hate the steroids but cant get tapered off of them. IG isnt working well, PlEx they only want to do when I get really bad (and is 10 days in hospital)
Prednisone: less patient with people, cant sleep at night, glaucoma, cataracts, some other blurry vision the docs attribute to it, type 2 diabetes, GI upset and a few others I am probably missing…what a nasty drug.
Insurance wont approve the immunosuppressant they want to use to replace the steroids.
September 8, 2019 at 5:52 pm #117134Mark RobichekParticipant
As a fellow Bay Area resident with CIDP, I thought I’d chime in here. It took 3 different physicians, but once I finally switched to one that works for one of the GBS/CIDP Centers of Excellence, I was properly diagnosed with CIDP in July, 2018.
My previous physicians has prescribed various doses of IVIG (something I had already been taking for a primary immunodeficiency…lucky me!). Unfortunately, no dosage of IVIG worked against my CIDP.
My current physician prescribed two things:
1) Prednisone, starting at 60mg per day and tapering over time
2) a regular, massive dose (100g) of IVIG every 3 weeks. When my veins started becoming harder to access, I made a life-changing transition to SCIG, and now I’m infusing myself once a week (30g).
Almost instantly after starting the Prednisone/IG combination, I started getting better (after 8 months of feeling lousy and weak). Now, my Prednisone dosage is down to 2.5mg per day, but I’m still getting 30g of SCIG per week. My strength is back to 100%, and I’m feeling great!
I don’t know what the future will bring, but I’m very optimistic!
Best of luck to you.
September 20, 2019 at 6:57 am #117148
I’m in a similar situation. I was diagnosed in July with CIDP. Insurance has approved IVIG but it’s not available because of the shortage.
My neurologist put me on 60mg/day of Prednisone, then reduced to 40mg after my last visit. At 60mg I was hyperactive but it was improving things. Since the reduction I’m seeing at best stability but I’m also seeing some fatigue return. The worst part is it is wreaking havoc with my glucose levels, with huge spikes (often over 300) and a big crash later in the day.
I suggest reading up about the steroids. They help but continued long-term usage can create a lot of problems. I’m hoping to at least try the IVIG to see how well it goes.
September 20, 2019 at 6:17 pm #117152
I haven’t responded much, if at all to the Prednisone. It’s been 4 weeks, maybe to soon to tell. Since were not getting a response from the Prednisone, my neurologist decided to give IVIG another try. We struck out at my local infusion centers. Someone suggested contacting a specialty pharmacy for in home infusion. After considerable leg work(pun intended cause my legs, well don’t work) the IVIG arrived today and will be administered in my home next week. Nufactor, Ameripharma and Acredo are specialty pharmacies you might contact to see if it’s an option for you.
I haven’t had any horrible issues with the Prednisone, aside from sweating like crazy and that hyper active feeling. Before I started the Prednisone, I met with a dietician who recommended an anti-inflammatory diet. I’ve followed it religiously since then. Lots of cruciferous veggies, high omega-3 foods, etc, no processed foods, red meat, dairy, etc. Thus far I’ve managed to maintain my weight, and actually lose a few pounds, despite high dose of prednisone. You might consider discussing this with a dietician to see if it might be a good option for you as well.
Wishing you lots of luck! Hope you recovery a swift and successful!
September 25, 2019 at 7:10 pm #117162SandraPParticipant
The Washington Post had a story on Tuesday about the IVIG shortage that attributed it in large part to the increasing use of IVIG for off-label purposes. Some doctors are even giving it to dementia patients just to see if it will make a difference. Only 6 disorders — one is CIDP — are FDA approved for IVIG, but it’s given for all kinds of things these days, including many types of infections. It’s an expensive blood product that takes a long time to produce. But my infusion service says they have an ample supply and don’t anticipate any shortages.
September 25, 2019 at 8:36 pm #117163Jim-LAModerator
The FDA publishes a status of shortages (Gammaplex and Gammagard are at the top of the list right now) and you can find more info about the Ig shortage here:
An explanation of the shortages can be found in the following article:
September 28, 2019 at 6:54 pm #117173SandraPParticipant
I take Gamunex and my infusion service has no shortage of it.
October 1, 2019 at 8:18 pm #117180
I too have been waiting for IVIG due to the shortage. I’ve been on Prednisone for about 3 months now since being diagnosed. The only problem with it so far is it jacking up blood sugar for several hours after taking it. Originally with highs around 250-260 but now seeing some over 300. I have much less pain. My energy not only returned but then had too much and became restless. My weight started going back up after going from a healthy 180 to 145 lbs.
I was on 60mg but recently lowered to 40mg and seem to be slowly relapsing now.
I do have concerns about steroids because of the long term damage they cause so am willing to give IVIG a try.
October 1, 2019 at 11:13 pm #117181DavidParticipant
Dana, are you given the option to use an immunosuppressant drug? I take Cellcept in conjunction with Prednisone. I’ve been tapering off of Prednisone since July and am now at only 10 mg and will be at 0 mg in 3 weeks. The Cellcept takes the place of the steroids and no need for IVIG. I am having good results.
October 2, 2019 at 5:28 am #117183
No, that option hasn’t even been presented yet. I’m going to ask about it.
Any side effects to worry about?
October 2, 2019 at 1:55 pm #117189DavidParticipant
I haven’t had any major side effects from the Cellcept. In theory, it lessens your immune system so healing from a bump or bruise or cut takes a little longer, but I’ll deal with that. while I am about 3 weeks away from being prednisone free, I anticipate continuing the Cellcept for probably at least a year. My gut feeling is that when I eventually taper off of the Cellcept, my CIDP may also be in remission. I think this was a good formula and a good choice for me. I’ve had a bit of weight gain and bloating from the prednisone and some minor withdrawals generally every time I drop in dosage.
- You must be logged in to reply to this topic.