October 10, 2012 at 7:24 pm
After nearly three months, the decision was finally made by my neuro that I would have to have two ports implanted if the plasma exchanges would be continued as veins finally gave out. Tomorrow morning I am scheduled to have bi-lateral Vortex ports implanted.
Have many concerns, but since PE has been the only treatment to keep my CIDP progression slowed, have no other alternatives. Will let you all know how the implants go. Have to wait 2-3 weeks to use them, but will update my post so others who may be considering a port will have the benefit of my experiences.July 28, 2012 at 8:20 am
I also had GBS in 85, then CIDP in ’96. Just had annual check up and had low vitamin D levels. Doctor (internist) said muscle weakness can result from low D levels and also gave me an Rx. This is the third time on prescription D so there could be something to it as a contributing factor. You did not mention any of the usual treatments like prednisone, IVIG or plasma exchange. Just curious, but did you have any treatment for your GBS?July 28, 2012 at 8:03 am
Just had my 500th plus plasma exchange today which is why I am on the computer at 3 in the morning. I get an infusion of 1000mg methyolprednisone after my exchanges, so I stay pretty wired for about 36 hours.
Had my first exchange back in 1996 (CIDP diagnosis in 1995, GBS in 85) after IVIG did not help and it was not a big deal. Sometimes, on the first exchange there can be a drop in blood pressure causing you to faint (which was me), but did not lasting effects and I walked out of the hospital about 30 minutes after the procedure was completed. The worst part about the exchanges is the time. If you have a port put in the time is shortened considerably.
About 2/3rds of my exchanges have be done using vein punctures (18 ga pharesis needles) in each arm. I use a numbing cream applied about an hour before the procedure and I seldom even feel the needles sticks, and I hate needles. Using this method it takes between 90-130 minutes to complete my 3 liter exchange. I don’t feel anything during the procedure and watch TV and talk to my nurse. The only problems I have had is an occasional flow problem when the needle doesn’t get set in the vein just right which sometimes requires a second stick. There have been a few times over the years when a vein has given up and blown out which hurts a little and usually swells. When this happens, they usually go to a smaller angio-cath needle (22ga) which allows them to use a much smaller vein as the return line. This causes a little anxiety(the 10 mg valium should be sufficient) but I have always been able to complete the procedures. I drive myself to the hospital and home after the exchanges with no difficulty. When I get home I do put ice packs on each puncture site, 20 minutes at a time every two hours to minimize any bruising.
I have had five perma-caths put in. These cut the exchange time down considerably, 70-75 minutes for me. My caths all had exposed lumens which had to be tended using sterile fields, mask, gloves, etc. and had to be flushed with heparin every week. Unfortunately, each got infected and had to be removed, which is why I am doing the vein punctures again.
Currently have exchanges every three weeks now but the number of exchanges is finally catching up with my veins in the form of scar tissue so I am now looking into the new ports which are implanted just like a pacemaker. Since they are under the skin with no external parts, infection is extremely rare. I have a post under Vortex ports as I was looking for some one having this type port to get there feedback.
I have also looked at the Power Port.
Hope this helps ease your concerns some. For me the reality is, plasma exchanges have always been my go to treatment when every thing else failed to help me when I have relapses. Pretty sure I have been on every CIDP treatment mentioned on this site and even tried three MS treatment protocols. Sorry to ramble, but feel I’ve been down the PE road much more than most and wanted to share my experiences.
Please remember everyone responds differently to the various treatments, so what works for one may not work for another. You and your doctor have to stay proactive and find what works best for you. Hope the PE helps you as much as it has me. Keep us posted.
FredJuly 26, 2012 at 12:12 am
I sure hope your husband does well with the new port. It sure sound like his CIDP really did a number on him.
Since I am actively looking into a port my self, I would be very interested in knowing more about the new version your husband is getting and how it works once treatments begin.
Everything I have found out so far is pointing me toward the Power Port with dual lumes. I am working directly with the local Red Cross aphersis supervisor so that what I ultimately choose is sufficient to handle the flow rate.
Sure wish you all the best and pray everything goes well with the implant and subsequent exchanges. As Laurel said, please keep us posted.
FredJuly 8, 2012 at 7:29 pm
Thanks for the input. I currently get my PE at the hospital’s ambulatory care unit. The PE nurses said I would need a double lumen port and the flow rate would be slower than with the traditional 18 ga needles. Told me the exchange would take 20-30 minutes longer with a port because of the lower pressures and flow rate. If that is the only down side, I can live with that. The last two exchanges were done using a 22 ga angio cath for the return as they could not find a place for the 18 ga needle, which is why I am digging into the possibility of the port. Have also seen a change in flow rates over the past six months as my veins dry up. They used to run machine at a 110-120 flow rate but this is now slowed to 70-75 the past two exchanges. Next step will be to find a good vascular surgeon who has implanted a bunch of these and get his/her take on use for PE. Appreciate the input.
FredJuly 7, 2012 at 11:00 pm
Jim I now know about the multiple sticks to get into the vein good. I will look up the power port.
FredJuly 7, 2012 at 1:24 am
Kelly, how long was it from the time they put the port in Emily until they could access it? What brand port does she have? I understand they come in single and double line configurations. Fortunately the same Red Cross nurses that have been doing my vein sticks for PE already know about the infections with the past permcath’s and are really good about sterile conditions. I’ve had the same nurses for the past 5-6 years. They have also recommended a vascular surgeon who has put in lines for current and past patients, so I am going to start the search.
I do have a heart condition (11 stints) and have to get clearance for the surgery from the cardiologist who I see next week.
After all the problems with the permcath’s just want to get come positive feedback on the ports before I jump in.
I really appreciate your feed back. Hope Emily is doing well.
FredJuly 6, 2012 at 2:35 am
Most people look at me with a blank stare when I tell them I have CIDP, but if I tell them it is like a cousin to MS they say ooh! and realize that I do have a serious illness and back off and become much more understanding about my limitations.
MS and Parkinsons get all the PR and funding, but suffer no greater impairment then what we with CIDP endure.July 6, 2012 at 2:14 am
Have been on IV Prednison for many years with no long term side effects. Dosage has ranged from 1000mg daily for three days during flares to 1000 mg after PE every three weeks. Has been a good alternative as most of the other treatments such as IVIG do not help my case. Pulse doses do not have the effect on liver and kidney functions like long term oral.
FredJune 11, 2012 at 12:33 am
My CIDP has been up and down over the years. Had it in remission a few times, but it has slowly progressed the past couple of years. I’m happy to share my experiences with this bummer disease, but please remember, everyone seems to respond differently to the various treatments being used, so what stops the progression for one, may not work for another. Currently I am doing plasma exchanges every three weeks with an IV dose of 1000 mg Solumedrol immediately after the exchange. I also take CellCept, 2000mg a day. The lack of treatment for my GBS is ’85 caused permanent nerve damage, so I was behind from the get go with CIDP.
Over the years I have tried pretty much every thing on the market, including several of the newer MS drugs in a effort to stop the progression. Cytoxin worked for a while, but sickness and fatigue caused me to stop. Had some short term success with Ratuxin also. Oral prednisone was helpful , but long term use of this can kill your kidney’s, not to mention the weight gains. IVIG was never helpful me, but many on this site respond very well to it.
While I can’t run, jump and play with the guys, I have been able to adapt to my limitations and enjoy an active life. I still restore antique cars as a hobby and we travel a good bit. I chose many years ago to accept the disease for what it is and concentrate on what I can do, not what I am no longer able to do. The human body is an amazing machine and the ability to adapt has so far, always been there for me. I do use a cane when walking to help with balance and if a lot of walking is involved in an activity, I have a small electric city bug scooter that I use. I retired six years ago and my quality of life changed for the better almost immediately. You’ll see many posts about the effects of stress.
My body’s inability to get this into remission is no reflection on how you will respond to treatment if they do diagnose CIDP, so don’t get down on yourself. It is a very frustrating disease and can really play mind games with you, so stay positive and keep educating yourself so you can ask the necessary questions. Hope you can get a diagnosis so you can get treatment quickly.
Kelly’s thoughts on another doctor is certainly something to keep handy. Keep us posted.
FredJune 9, 2012 at 2:35 am
Your case seems very similar to mine. I had GBS in 85, but doctor at the time told me there were no treatments for GBS so I recovered through mother nature. Got back to about 85% and did well with no symptoms until the summer of ’96 when I began having balance problems, muscle twitching and grip strength loss. Went to a new neuro and he began with the usual testing for heavy metals, MRI (to rule out MS), nerve conduction, spinal tap, etc and came up with no definitive diagnosis. As my symptoms continued to get worse over the next six months, he finally scheduled a nerve and muscle biopsy which confirmed the diagnosis of CIDP. Just another avenue of exploration for you to inquire about.
Has your doctor mentioned the nerve or muscle biopsy to rule out CIDP? Based on your post, the question the doctor has not answered is why he is ruling out CIDP without exhausting all of the diagnostic tests available? Has he had other CIDP patients?
You are right about early treatment, it is very important. I wish you the best in the future and hope you get a definite diagnosis for the cause of your symptoms so you can get the appropriate treatment asap.
GAVolMay 4, 2012 at 6:44 pm
If you don’t get approval for Rituxan, have you tried IV solumedrol with plasma exchange? After about 2 years I had to stop IVIG due to cardiac side effects and went back on PE with 1000 mg IV solumedrol at the end of the exchange and it seems to be hold me steady. For me, IV prednisone does not have the same side effects a long term oral treatment did. We all respond differently to the various treatments, but it is another possibility for you to consider. Good luckFebruary 24, 2012 at 8:45 pm
Have they tried to use the anacubica (sp?) veins in your arms? I am currently having PE every three weeks and they use a 16 ga needle in each arm and I have had no problems. Use a numbing cream about an hour before the sticks and have no pain. The down side is you have to keep your arms straight during the procedure. On occasion they use an angio cath in the wrist for the return line which allows the use of one arm during the procedure. I have been doing PE this way for well over five years and have had the procedures as often as weekly using the vein sticks. My veins are holding us fine.
My Neuro tells me that fistulas do not hold up for PE. There is a newer port that is under the skin in the chest and from what my Red Cross nurses tell me they work very well. I am saving this as a back up to my vein sticks. To use the vein stick, you have to be very well hydrated and after the procedure you need to ice the access sites off and on for several hours after the procedure. This helps the veins recover. Hope this helps. Good luck.February 8, 2012 at 6:37 pm
I have relied on PE off and on for the past 15+ years. Have had series of 5 days straight, then weekly for several months, then gradually tapered off to every two weeks, then monthly, etc. until finding the combination that helped me improve and maintain. As you noted, everyone reacts differently to the various treatments and response time varies. Early on, I saw improvement within a couple of weeks. My exchanges have always been followed with an infusion of 500mg solumedrol, which always gives me an immediate “boost” of energy. When I plateaued with the PE treatments, I tried everything you see on this site, plus some of the MS treatment protocals, but when I saw signs of regression, I have always been able to fall back on PE and solumedrol infusions and continue to have success in “maintaining”. I never got back to 100% after the CIDP was diagnosed, because I had a lot of residual from GBS 10 years before CIDP, so I consider being able to maintain to be victory. I would not give up on PE to quickly. Over the past 15 years, I have had well over 300 PE’s (not a typo) and I still maintain a pretty active life, so for me, its been the best treatment. Others have great success with IVIG and prednisone. You may have to search a little to find what works best for you. Good luck
GAVolSeptember 15, 2011 at 8:43 pm
On some of the links suggested, and others I found from those searches, most of the guidelines separate apheresis and plasma exchange. They define theraputic pheresis as extracting the plasma and returning only the processed blood vs plasma exchange which returns a plasma substitute such as albumin. The CMS guidelines state theraputic pheresis for CIDP, but do not list plasma exchange which is some what confusing.
When you have your procedure, do you have just the pheresis or the complete exchange?
The info on the ABN was very helpful and I will ask my doctor about that when I see him next week. Appreciate the responses and helpful links. Thanks everyone.