CIPD Treatments..Not going well so far.

Joe I am sorry that you are having such a bad reaction to the IVIG and prednisone. My hubby does well so far on the IVIG. All I can think of is getting plasmapharesis, and then perhaps combining it down the road with something like Cellcept. Hopefully some forum members who have success with plasmapharesis will jump in and explain it to you. Good luck. No idea about a good neurologist in your area as we are on the West Coast of Canada.
Laurel

Joe there is a list of centers of excellence for treating CIDP. I think some of them are within travelling distance of NYC. I think going to a center of excellence sounds like the best plan if you can swing it. Here is the list.
Laurel
Seven Medical Facilities Designated “Centers of Excellence” for the diagnosis and management of inflammatory neuropathy by the GBS/CIDP Foundation International

(Narberth, PA.) The GBS/CIDP Foundation International today announced the designation of seven initial “Centers of Excellence” for the diagnosis and treatment of Guillain-Barré syndrome (GBS) and Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) and variants.

The centers will form a network of healthcare facilities to provide expert diagnosis and management of inflammatory neuropathies for patients who are unable to consult with medical experts in the field in their own communities.

“This is the first round of designations,” said Patricia A. Bryant, executive director of the foundation. “We will be accepting and evaluating applications from other interested institutions in the future in our efforts to better serve patients with these debilitating diseases,” she said.

The designated facilities are:

Heinrich-Heine University Department of Neurology, Germany
Phoenix Neurological Associates/Banner Good Samaritan Medical Center, Arizona
St. Elizabeth’s Medical Center, Massachusetts
The Johns Hopkins University School of Medicine, Maryland
University of Kansas Medical Center, Kansas
University of Texas Health Science Center, Texas
Wayne State University School of Medicine, Detroit Medical Center, Michigan

for the IGa IGg and so on? Some IVIG products have a lot more of a % of IGa and IGm than others… Which can cause reactions in about 10-40% of IG users [depending on who is reporting on it].
Sooo, Do you know which brand you are using? Go web up the complete prescribing information for that brand of IVIG…
Here is an example: URLhttp://www.gamunex.com/media/Gamunex_Prescribing_Info.pdfURL
On that first page are: Contraindications, warnings and adverse reactions. READ THESE AND MEMORIZE these…could save your life?
Next Call and talk to your doc about your reactions ASAP. Usually taking varied doses of Benedryl and/or Tylenol can get you thru the worst of it.
BUT for the hives! Do you have a dermatologist as one of your docs? If so, schedule an appt for the day after your next infusion! There are steroid topicals that can help the ‘rash’, and really help that ITCH! But this type of doc has to SEE the rash to treat it. It took me two tries to get to the derm. doc to see it and I then got topicals rite away! I’ve been ‘there’ and it IS scary! ????
USUALLY, the combo of Tyelenol and Benedryl do help? Maybe changing the brand you’re using of IVIG as well. ASK your doc and don’t give up yet! PLEASE.
Second for a good neuro? Go to USNews and World Report…they annually put out a TOP HOSPITALS review that’s pretty thorough…the go thru the various hospitals’ neuro docs to see who’s familiar with CIDP issues -Neurologist [ideally], but could be an immunologist or a rheumatologist as well. Read the bios and dig deep into their web sites and see what papers are published by them..gives you a handle on how they THINK about US….thus treat us!
Also? Ask your old Neuro who’d he would recommend to take over your care? Bet he’ll give you at least 2-4 names to check out and into…likely put a good word in to them for you as well!
Good luck, let us know and bless you for all your trials! It IS soo hard to get diagnosed, let alone treated! Keep trying!

Hello Joe,

As Homeagain suggested, you might be sensitive to IgA and IgM in the IVIg. Consider asking you doctor to switch brands. You might also be sensitive to the rate at which you were infused. A slower rate would be a good idea. It is a good idea to be very well hydrated before, during, and after the infusion. Try to drink a half gallon of water for a couple of days before, the day of, and the day after your infusion. My infusion center automatically gives Tylenol and Benadryl (or the generic equivalents) before IVIg (unless they are contraindicated for the patient).

I use plasmapheresis as one of my main treatments. What happens is your blood is sent into an elaborate centrifuge system, where the plasma (the liquid) is separated from the red and white blood cells. The plasma is diverted to a waste collection bag and the cells are mixed with human albumin solution and sent back to you. The thought is that by reducing the number of bad things (cytokines and antibodies) in your blood stream, you slow down or stop the attack on your nerves.

You can have plasmapheresis with two venipunctures, one in each arm. You will need large veins, though, because the needles are necessarily large diameter. If you don’t have large veins, a catheter would be necessary. At first, you would get a temporary catheter. It is unpleasant to get (minor surgery, done with lidocaine), and a nuisance while you have it, but it is definitely worth it to find out if plasmapheresis will work. If it does, then you would most likely opt for a more permanent one.

As for a new neurologist, Weill-Cornell has a well-regarded neuromuscular program. You might try them.

Godspeed in finding a tolerable treatment,
MarkEns

Joe:
I have been treating at the Peripheral Neuropathy Center at Weill Cornell Medical Center in New York City. The Clinic is located on the 2nd floor at 1305 York Avenue in Manhattan. My physician is Norman Latov, M.D. He is an expert in the field. I have also seen Dr. Chin there and he is also very good. The telephone number is (646) 962-3202. I recommend them highly. Best of luck.

That combo worked very very well for me.

I was physically at a point where I couldn’t stand up for two months, open a can of soda, or lift a one-pound dumb bell above my head when my neuro started me on plasmapheresis and Cellcept.

By the second treatment of plasmapheresis, the grip in my hands were probably 25% stronger and I could lift my leg a foot or more off the bed (after barely being able to move them at all for a month).

I was told by my neuro that it takes Cellcept 6 months to “fully kick in,” which means I needed one treatment every month for 6 months once I was done with the initial barrage of inpatient treatments.

I had 13 treatments total – 7 inpatient and 6 outpatient and the Cellcept “kicked in” in the month of August.

At this point, I’ve recovered beyond 100% from CIDP in large part because I’ve continued a vigorous workout plan since rehab ended and also incorporated a strict diet which combined has enabled me to lose 85 lbs in the last 5 months.

I require no other treatments and depend completely on Cellcept and I no longer have to see a doctor until I need my med scripts in the Spring.

A lot of neurologists don’t like ordering plasmapheresis treatments but it unquestionably worked better for me than IVIG.

>I am in NYC for gods sake they should have a total expert in CIPD here!

Agree with that. Try Cornell or NYU.

I have reacted to IVIG, though not as badly as you are describing. When I have reacted to IVIG they have switched brands and added pre- and then post-infusion IV steroids. Other thoughts are to hydrate more, have them slow the infusion rate way down and try one treatment per week vice a multi-day loading dose. And there is always plasmapheresis.

“I have been treating at the Peripheral Neuropathy Center at Weill Cornell Medical Center in New York City. The Clinic is located on the 2nd floor at 1305 York Avenue in Manhattan. My physician is Norman Latov, M.D. He is an expert in the field. I have also seen Dr. Chin there and he is also very good. The telephone number is (646) 962-3202. I recommend them highly. Best of luck.”

I have been seeing Russell Chin since spring of 2004. He is highly experienced with CIDP and makes a special effort to keep in touch with me because I do not live in the NY metro area. The staff at the Peripheral Neuropathy Center is also very pleasant and helpful, which makes a difference.

what is your workout and diet plan? i have been researching superfoods and trying a holistic approach.
the wowrkout plan is something i want to get into but i am still in my afo’s so that’s hard right now.

Hydration is soo important…can’t under emphasize it enough.
I cheat [sort of] and down a small 10 oz gatorade the day before then drink water and other liquids till I slosh-almost. As the IG’s go to work and kill off the bad guys? They go thru the liver which is taxed enough as it is, so more liquids a couple of days before and a couple afterwards are useful to help flush stuff out. I’ve actually gained as much as five pounds w/the extra hydration. It goes away by the next time. Soo don’t be alarmed by that?
I’ve also been up and down the ‘menu’ for tylenol and benedryl – from 3-4 of one and 4-3 of the other to reverses and then downsizing. I’ve now found my ‘happiest rates’ and can get by on just 3 benedryls. I have to say that I usually get more side effects from the pre-meds than the IVIG for the most part!
I’ve never been offered Plasmapheresis yet. Guessing that the IVIG has worked well enough and PP is a ‘bit’ more invasive a procedure. Do keep that in mind as you sneak in time to research stuff.
When getting your IVIG? Your infusion nurse ‘should’ show you the bag, with your name and the med on the label!!! READ IT! It should state clearly the brand and quantity of IVIG you should be getting- Keep a record of that, please. I’d had to stop infusions at a nearb y hospital because they’d labelled the IG as ‘Brand X or ‘equivalent”….they were using the cheaper brands and charging my insurance for the higher priced IG. I’d thot I was going crazy at first because IT WASN’T WORKING! DUH? Once I’d gotten the actual listings? I’d only been given 2 daily doses out of fourteen of the correct brand. THAT IS ILLEGAL according to the FDA-they must notify you and your doc and did neither.
Yes, it gets complicated? Try looking up ‘IG Living’ a free magazine dealing with a lot of different IG products – sign in – it’s free, and you don’t get junk mail and you can look up back issues of the magazines articles to help you understand what IG is all about. How they ‘make it’ from last year was a good one! One thing I’ve gotten from this magazine is to know that I am NOT ALONE with just CIDP? Many others rely on it and other products as well.
I am hoping that you can find and ‘connect’ with a new neuro and SOONER rather than later! You need someone pulling for you NOW!
Don’t give up yet, ask sensible questions and don’t back down till you get answers! After all? It’s your LIFE, and your CARE at stake!
Keep us all up to date, please? I’d like to know that somethings’ going right!

[QUOTE]what is your workout and diet plan? i have been researching superfoods and trying a holistic approach.
the wowrkout plan is something i want to get into but i am still in my afo’s so that’s hard right now.[/QUOTE]

I workout 5 days a week – Mon thru Fri.

I do weights on Mon, Wed, and Fri and cardio all 5 days. I’ll do the bike for 30 min and then the treadmill for another 30 min.

I just started running, too. Hadn’t done any kind of running in over a decade, but it is coming back to me quicker than I expected.

On days I do weights, I’m at the gym for a good 2 hours. On days I do just cardio, I’m there about an hour.

My diet is low fat, low carb, low sugar, low sodium, high protein, TONS of fiber, no junk food, no fast food. Haven’t eaten any chips or sweets in several months.

My breakfast every morning is a fruit smoothie – banana, plain fat free yogurt, skim milk, whey protein, strawberries, blueberries, peaches, flax seed, and psyllium husk.

I take a GNC mult-vitamin as well.

If possible, get in the habit of eating flax seed every day. It’s one of the most nutritional and cheap “super foods” there is (Omega 3s, high fiber and protein, helps lower blood pressure).

You could buy a pound of whole flax seed at your local grocery store for $4 or $5, grind them with a coffee grinder, and it will last you a month. I just bought a 6-7 month supply on Amazon.com for $35. Not a bad deal.

I started my diet making subtle changes every few weeks instead of making it really strict from the beginning. Nobody ever sticks to really strict diets from the get-go. My weakness was always Coke and that was the first thing I stopped drinking. Now, all I drink is skim milk (for smoothies and protein shakes) and water. That’s it.

Now this doesn’t mean I never cheat. I’ll eat a burger (as long as it isn’t fast food) or steak or pizza occasionally. I just limit my portions.

Hope that helps.

I was also a patient of Dr. Chin’s and agree with Brian about the Neuropathy Clinic for care. Dr. Chin was also helpful to me in referring me to a neurologist at UVa Medical Center when I moved to Virginia, so when you go to Ohio he may have a contact there.
Good luck.

Dr. Latov is top in the field but if he can’t take you there is an equally good group at the Columbia Neurological Centre. Dr Rajeev Motiwala works with Dr. Thomas Brannigan’s group there.

Dr. Motiwala saw my husband in April,2010. He received diagnosis and treatment within 4 days of arriving in NYC (from Canada).

Google Columbia Neurological Center at New York Presbyterian Hospital for contact info.

Best of luck to you!

Joe, the numbness in your face/neck may be the result of cranial nerve involvement. Some cases of CIDP have this added “attraction.” I don’t know much about it…it may even be a classified as a subtype of CIDP. You might want to start a thread soliciting input from people who have had numbness in face and neck. It is not a symptom of the garden variety of CIDP.

Good luck!

Sharon

How is it going? Good or bad, we care!
Would love to hear ‘good news’, but I’m practical. And, I can take it and help IF things aren’t going well. As can soo many here. Please don’t be shy or embarassed. We care and want to know. Plain and simple.

I have it. It shows up as numbness and tingling in my face and a strange sensation when I twist my head. Sometimes that leads to dizziness.