CB, maybe you can add a day here and there…so like you said, not bad that you added 3. Feel better. Jo
chirpybirdy said:
I am sad to say it is only three days past my usual infusion and I am leaving work to get an infusion. Well, at least I made it 3 more days! Maybe I can stay at 24 days instead of 28. My legs are feeling stiff and heavy today and some burning on my top of the hands. Symptoms for sure. Bummer.
Hi, Bill.
After 15 years, I just got tired of going to the hospital for a half day or better every month. I felt that plasmapheresis was a more invasive procedure and was hoping to get more flexibility and freedom with IVIG. So far, I have been pleased. I was able to move to Colorado away from major hospitals and can travel for work much more than I could before. My new goal is to switch to SubQ IG to get even more self-reliant. My symptoms are stable, so I think it's a reasonable plan.
Tom
Uncle Bill said:
Hi Tom,
Just curious: why did you switch from plasmapheresis to IVIG? Did the plasmapheresis stop working? Or did your doctor think the IVIG would be more effective?
Bill
Tom V said:Hi all,
Great discussion. I've been on IVIG for about 6 years (have had CIDP for 21 years - plasmapheresis for the first 15) and am pretty soundly at 4 weeks. Whenever I have to travel on my infusion date, I either push my IVIG up or back by a week to 10 days. But, if I do a 5 week cycle, then the next is 3 weeks so that the average is 4 weeks. It works best for me. I tried to extend to 5 or 6 weeks about 3 years ago, but noticed more symptoms. I intend to try extending the time again, but will discuss with my neurologist first. I applaud all those who are trying to extend their treatment cycles - I believe the right amount of treatment is just enough. I've run into doctors who say "if it ain't broken, don't fix it", but I believe that we should always be willing to try something new.
I'm really interested in the discussion of Sub-Q IG. I was told by my home health nurse that this is only approved for Primary Immunodeficiency (PI) and not for CIDP. When I asked my neurologist, he said he wasn't familiar with it and didn't want me to try it. I would really like to have the flexibility to do my own treatments. Does anyone know if there is or may be an approval for CIDP? How can you get the insurance to pay for a treatment that isn't officially approved? Thanks for taking the time to post your stories - it really makes a difference.
tom
Today, the day after my infusion I feel better. All symptoms gone. I was fatigued last night and slept like a baby. I usually am an insomniac but for some reason the infusion exhausted me and I fell asleep while watching the news. Since I got my infusion mid-week this time (was hoping for Sunday but got Wednesday). I am going to have to go 24 days next time to get back on my Sunday cycle. I can't take time off every 21 days for infusions. But I think I will be ok since I got to 24 days this time. But then my neurologist recommends sticking with the 21 day cycle for some time before trying to push it out again. She said sometimes they might try to decrease the dose before pushing out time between cycles. What is better, to get a larger dose less often or a smaller dose more often? I would rather have less infusions at a higher dose then keep the 21 day cycle but get less of the drug myself. Well, at least I don't get any side effects from my infusions. I am back at work and feeling 100% (well, a little more tired then usual).
Hi Chirpy,
Glad to hear your latest round went well.
In theory, more frequent and smaller doses would be preferable. The idea is that when you get a dose, you have a certain amount of IG floating around in your system. That gradually diminishes over days and weeks until it is not enough to counteract the CIDP, and then you get another dose. So there is a constant cycle of high IG, gradually going to low IG, and back to high IG.
If you get frequent, small treatments, this is evened out somewhat. The highs aren't as high, and the lows aren't as low.
Having said that, I personally chose larger, but less frequent, doses. It makes life so much easier to plan. My case is a little worse than yours, because I have to go in for three days when I get a round of IVIG. That pretty much shoots a week, and there isn't much else you can plan to do. And, as you say, I feel pretty drained after each day's treatment, so even though the infusion only takes a morning, the rest of the day is just about worthless. My doctor talked about coming in for only two days, but doing it more frequently. But I prevailed on him to stick to three days, but less frequently.
In any case, you have to decide what works for you, and minimizes your symptoms.
By the way, the nurses tell me that the reason I feel so tired on the day of a treatment is the fact that they give me a shot of Benadryl to minimize bad reactions. But, it lasts the entire day, and I am not sure one shot of Benadryl would do that. I have talked to one other woman who gets the CIDP on a similar schedule to me, and she tells me that she has the same response. So, I am wondering if you get the Benadryl? If so, maybe that is the reason. I am thinking of asking to have it without the Benadryl some time, so that maybe the rest of the day won't be such a loss.
Bill
Hi Bill,
I do not take Benadryl. I take 180 mg of Allegra (which is somewhat like Benedryl but non drowsy). I have been taking Allegra since the beginning because I drive myself to my infusions and they did not want me taking Benadryl and then driving home drowsy. Since I do not get any reaction or side effects I guess it works. I am not that fatigued after infusions. I usually have my infusion in the morning from 7 am to around 11 am and then go home. I usually still can do something that day but I move a bit slower. But this time I felt more tired than usual so I think maybe it was because I waited the extra days to get my IVIG...maybe my body had to work harder to counteract the CIDP??? I don't know. But today, the day after I am up and going normal...at work for my normal 10 hour day. I hope I don't fizzle out before the day is done.
I don’t know how you are working with this deasease and give you a standing ovation. All I wantto do is sleep. Round 4 of first week of IVIg and I am feeling it work. yipeee. I am extremely exhausted afterwards also and get one benedryl. I am also currently on Percocet for pain tho and that makes me sleepy too. I have not been able to drive for months due to pain meds and probs with hands & feet. Maybe when I can drive, will ask for Allegra too. Thanks for info. Chirpy, You are my hero. Jo
Hi Jo,
I think I am lucky because I was diagnosed very quickly so my body did not get a chance to do too much damage to my nerves. I got the flu vaccine in Nov. 2010 and started having a numb foot within 10 or 12 days. Then other symptoms appeared. I saw my neurologist by January 2011 and was diagnosed and starting Pred by April 2011. So I started treatment within 6 months of onset. They say you have the best results if you start treatment within 8 months of onset. So most damage I think reversed or stayed the same. I count my blessings everytime I read about other CIDP suffers and the road they have taken. I feel for so many of you going through what you go through. When I find myself down or pittying myself I need to think about all the other's going through this that have a much tougher road to go down. My prayers go out to all those who suffer so much without much relief from symptoms. I also think working makes me feel as much to normal as possible. I just hope the IVIG keeps doing it's magic for me and keeping this horrible disease at bay. Sometimes I think my worst symptom is anxiety. I worry a lot now about my future. It keeps me up at night and sneaks up on me while driving or when I am taking my walks on my lunch hour.
Bill,
without commenting on your entire email, speak to your pharmacist about an effective non-sedating alternative to benadryl. your doctor might give you an answer, but your pharmacist will know. i won't interject my bias but check it out with a good pharmacist. mike
Uncle Bill said:
Hi Chirpy,
Glad to hear your latest round went well.
In theory, more frequent and smaller doses would be preferable. The idea is that when you get a dose, you have a certain amount of IG floating around in your system. That gradually diminishes over days and weeks until it is not enough to counteract the CIDP, and then you get another dose. So there is a constant cycle of high IG, gradually going to low IG, and back to high IG.
If you get frequent, small treatments, this is evened out somewhat. The highs aren't as high, and the lows aren't as low.
Having said that, I personally chose larger, but less frequent, doses. It makes life so much easier to plan. My case is a little worse than yours, because I have to go in for three days when I get a round of IVIG. That pretty much shoots a week, and there isn't much else you can plan to do. And, as you say, I feel pretty drained after each day's treatment, so even though the infusion only takes a morning, the rest of the day is just about worthless. My doctor talked about coming in for only two days, but doing it more frequently. But I prevailed on him to stick to three days, but less frequently.
In any case, you have to decide what works for you, and minimizes your symptoms.
By the way, the nurses tell me that the reason I feel so tired on the day of a treatment is the fact that they give me a shot of Benadryl to minimize bad reactions. But, it lasts the entire day, and I am not sure one shot of Benadryl would do that. I have talked to one other woman who gets the CIDP on a similar schedule to me, and she tells me that she has the same response. So, I am wondering if you get the Benadryl? If so, maybe that is the reason. I am thinking of asking to have it without the Benadryl some time, so that maybe the rest of the day won't be such a loss.
Bill
Thanks, Mike. I'll give it a try. I'm not convinced that the Benadryl is really the cause, because the effect lasts for so long. But, it is certainly worth a shot.
Bill
JMichaelS said:
Bill,
without commenting on your entire email, speak to your pharmacist about an effective non-sedating alternative to benadryl. your doctor might give you an answer, but your pharmacist will know. i won't interject my bias but check it out with a good pharmacist. mike
Uncle Bill said:Hi Chirpy,
Glad to hear your latest round went well.
In theory, more frequent and smaller doses would be preferable. The idea is that when you get a dose, you have a certain amount of IG floating around in your system. That gradually diminishes over days and weeks until it is not enough to counteract the CIDP, and then you get another dose. So there is a constant cycle of high IG, gradually going to low IG, and back to high IG.
If you get frequent, small treatments, this is evened out somewhat. The highs aren't as high, and the lows aren't as low.
Having said that, I personally chose larger, but less frequent, doses. It makes life so much easier to plan. My case is a little worse than yours, because I have to go in for three days when I get a round of IVIG. That pretty much shoots a week, and there isn't much else you can plan to do. And, as you say, I feel pretty drained after each day's treatment, so even though the infusion only takes a morning, the rest of the day is just about worthless. My doctor talked about coming in for only two days, but doing it more frequently. But I prevailed on him to stick to three days, but less frequently.
In any case, you have to decide what works for you, and minimizes your symptoms.
By the way, the nurses tell me that the reason I feel so tired on the day of a treatment is the fact that they give me a shot of Benadryl to minimize bad reactions. But, it lasts the entire day, and I am not sure one shot of Benadryl would do that. I have talked to one other woman who gets the CIDP on a similar schedule to me, and she tells me that she has the same response. So, I am wondering if you get the Benadryl? If so, maybe that is the reason. I am thinking of asking to have it without the Benadryl some time, so that maybe the rest of the day won't be such a loss.
Bill
Bill,
Best thing is to just check it out and maybe avoid B next time. It is in the antihistamine family and the newer "non-sedating" antihistamines are structurally similar. B has a 1/2 life that ranges from 7-17 hours depending on age and health. I dont know how our IG is metabolized but it or other meds you take could prolong the half life of B and that might be the reason your issues persist all day. On the other hand, others on the forum talk about fatique on the day of infusion. I feel so blessed to have no ill effects and to just have moderate/severe weakness in my legs (24/7) and not all the other issues we read about...........blessings, mike
JMichaelS said:
Bill,
without commenting on your entire email, speak to your pharmacist about an effective non-sedating alternative to benadryl. your doctor might give you an answer, but your pharmacist will know. i won't interject my bias but check it out with a good pharmacist. mike
Uncle Bill said:Hi Chirpy,
Glad to hear your latest round went well.
In theory, more frequent and smaller doses would be preferable. The idea is that when you get a dose, you have a certain amount of IG floating around in your system. That gradually diminishes over days and weeks until it is not enough to counteract the CIDP, and then you get another dose. So there is a constant cycle of high IG, gradually going to low IG, and back to high IG.
If you get frequent, small treatments, this is evened out somewhat. The highs aren't as high, and the lows aren't as low.
Having said that, I personally chose larger, but less frequent, doses. It makes life so much easier to plan. My case is a little worse than yours, because I have to go in for three days when I get a round of IVIG. That pretty much shoots a week, and there isn't much else you can plan to do. And, as you say, I feel pretty drained after each day's treatment, so even though the infusion only takes a morning, the rest of the day is just about worthless. My doctor talked about coming in for only two days, but doing it more frequently. But I prevailed on him to stick to three days, but less frequently.
In any case, you have to decide what works for you, and minimizes your symptoms.
By the way, the nurses tell me that the reason I feel so tired on the day of a treatment is the fact that they give me a shot of Benadryl to minimize bad reactions. But, it lasts the entire day, and I am not sure one shot of Benadryl would do that. I have talked to one other woman who gets the CIDP on a similar schedule to me, and she tells me that she has the same response. So, I am wondering if you get the Benadryl? If so, maybe that is the reason. I am thinking of asking to have it without the Benadryl some time, so that maybe the rest of the day won't be such a loss.
Bill
Bill,
I have an adverse reaction to Benadryl and do not tolerate IVIg well. My dr. And I have discussed an alternate plan. I go in for 4 days per infusion( really,really slow) and take Zyrtec instead. Zyrtec was preferable to say Claritin because it does not take a long time to be effective. It has worked out well for me. Just a thought to try!
Thanks! I will ask about this at my next appointment.
Bill
I have not had any luck trying to extend the time between IVIG. [I currently go in every 3 weeks] If I have a trip, I will will start 2-3 months in advance and alter my schedule +/- 1-2 days every treatment so that I won't need IVIG when I am away. There are other treatments that may help extend the time between IVIG. Cellcept (pill) is one, but it didn't appear to help in my case. Rituxmab is another that I am looking into. That will buy some people a year or two without IVIG (see the other discussion on this topic). Best wishes.
I have an appointment with my Neurologist in April. I am going to ask him about Cellcept and Rituxmab. Are these cancer treatment drugs do you know? What are their repercussions of using them. Do they have side effects or bad things like causing cancer down the way if used? I am interested in getting more info regarding these options. I have only tried Pred. which i hated and will NEVER use again. And now on IVIG but unhappy that I have to go every 21 days for life. I have another trip in the first week of April that falls right over my IVIG infusion. I am going to see if I can get it a few days early rather than pushing it out a week. I hate to get the infusion the day before I leave because I sometimes feel icky for a few days after the infusion but I have no choice. Oh well, thanks for your input. Jane
I believe that Cellcept is used with organ transplant patients as an anti-rejection drug. Rituxmab I believe is infused and more closely akin to chemotherapy. It may indeed be used as a cancer treatment. Both have risks, but you will have to weigh this with the benefits. From what I have heard Cellcept may increase your risk of cancer. Rituxmab has been (rarely) found to result in potential deadly brain infection. Wonderful, huh? It reminds me of those disclaimers they read on TV with drug ads. I have read research results about Rituxmab that reported that patients tolerated it well. I am considering Rituxmab and may indeed try it if my doctor thinks it will help.
I also am glad to no longer be taking prednisone. That stuff wears on your body.
I have gotten used to going in every three weeks. I am so thankful that the IVIG is effective. The hospital has wi-fi. I take my laptop and treat it like any other work day. Sometimes I listen to music. Also, some hospitals infuse IVIG in 10% solution, others infuse it in 5% solution. If you are getting it in 5% solution, you may consider finding a hospital that goes with 10% solution. 10% solution involves 1/2 the liquid volume of 5% solution and can be infused at the same rate. Therefore, the infusion time is cut in half.
I also feel a little tired and worn-out after IVIG. I used to always get headaches, but not so much anymore. My side affects are usually only that night. Hang in there.
PS Thanks for posting your picture. It is nice to see who you are talking to.
Hi Jane, have you investigated subQ or has anyone we know gotten it. I am not well enough to travel, but if I get there.one day, I can see the infusions interferring with your life. My gastro would want to put me on those immunosupressive drugs and I avoided it as much as possible because I was petrified.to have to add cancer to my catalog of issues. It is a big chance to take. I am trying to go to godson’s wedding in may and I understand your dilemma because the first treatment made me really sick. Even now, 1 week later, I still dont feel well. This sucks. I commend you in your efforts to find a better way. JoJo
Evan B. said:
I believe that Cellcept is used with organ transplant patients as an anti-rejection drug. Rituxmab I believe is infused and more closely akin to chemotherapy. It may indeed be used as a cancer treatment. Both have risks, but you will have to weigh this with the benefits. From what I have heard Cellcept may increase your risk of cancer. Rituxmab has been (rarely) found to result in potential deadly brain infection. Wonderful, huh? It reminds me of those disclaimers they read on TV with drug ads. I have read research results about Rituxmab that reported that patients tolerated it well. I am considering Rituxmab and may indeed try it if my doctor thinks it will help.
I also am glad to no longer be taking prednisone. That stuff wears on your body.
I have gotten used to going in every three weeks. I am so thankful that the IVIG is effective. The hospital has wi-fi. I take my laptop and treat it like any other work day. Sometimes I listen to music. Also, some hospitals infuse IVIG in 10% solution, others infuse it in 5% solution. If you are getting it in 5% solution, you may consider finding a hospital that goes with 10% solution. 10% solution involves 1/2 the liquid volume of 5% solution and can be infused at the same rate. Therefore, the infusion time is cut in half.
I also feel a little tired and worn-out after IVIG. I used to always get headaches, but not so much anymore. My side affects are usually only that night. Hang in there.
PS Thanks for posting your picture. It is nice to see who you are talking to.
Hi JoJo,
I too am very afraid of all the drugs like Cellcep, which I found out is an immunosupressant. Or the Rituxmab, which i found out is a form of chemo like they use for treating cancer. I don't want to have to be worried about getting cancer on top of CIDP. I just don't know what to do anymore. The IVIG scares me too because it is very potent. I don't get too much in side effects at this time but that could all change in the future. Also, I am so nervous about the fact that you can get other viruses through the IVIG infusions...have you ever read the brochure that Gammunex sends every month! They list all these awful things that can be caused by getting IVIG and they say you can even get the Mad Cow virus. That makes me very anxious! I have no options at this point but to take the IVIG and I am greatful that I am gettiing a good response but gosh, sometimes I wonder about all the drugs and the horrible things that they are probably doing to our internal organs. Did this CIDP doom me to a life of organ failure down the way... i won't get to retire with my husband and live the dream we have always talked about. I will be an old lady with many health problems and expenses, if I make it to be an old lady. On top of not feeling well some of the time I have anxiety over this whole disease and my future living with CIDP. But my doctor wants to put me on MORE meds for the anxiety and depression. I don't feel that more drugs is a good idea so I declined and am trying to work through things on my own. Sometimes I think less if better in the long run.
Hi Jane, sorry I meant to write Jo just one time but the jojo made me smile because that is what my dad used to call me. I feel like you & I are very much alike. We are anxious & not afraid to be honest about. People, including our wonderful husbands, tell us that we should take each day as it comes, stop worrying about every little thing, just enjoy feeling better, look at other people who have it much worse and blah, blah, blah. Although all of that advice is well-meaning, generally, at least for me, it doesnt help when I am really anxious. I am a real thinker and due to health problems, have not been able to do my teaching or any job in a long time. So I have lots of time to sit around and think of what COULD happen to me. Add to that that I also have Crohns disease & have nursed both parents to pretty painful deaths, and I have to admit, I’m pretty damn anxious. Sadly, I am not as strong as you are and have given in to taking Atavan on days when I just cant shake my anxiety. It does help, as does not being alone. Unfortunately, I am alone a lot. I hate it. This disease is very scary but I have researched the IVIg pretty extensively and I do believe that it is safe or I would not be taking it. CAN something happen? Yes, something cal always happen with any drug you take. Do I think if IVIg is working, you should stay on it as opposed to immunosuppressives or chemo? ABSOLUTELY no doubt in my mind. I think those more dangerous are to be in reserve for a time when IVIg no longer works. Just my opinion though it is a well researched one, I am not a doctor. I wish I could offer you more for your anxiety. I can only say that when you feel anxious, know that you are not alone. That you have a friend in NY with the same dreams of retiring with my husband (we always dreamed of traveling in Europe…oy, I can barely get out of bed now!), the same fears, the same anxiety. I know I will be thinking of you, sitting on the porch with your husband at your seaside retirement home in Florida, with your hand on your forehead shielding your eyes from the sun; the same sun that makes your gray hair sparkle, as you watch your great-grandchildren pull up in the car for your 80 birthday. That is my wish for you. Maybe if we both picture each other’s dreams, they will both come true. Jo
chirpybirdy said:
Hi JoJo,
I too am very afraid of all the drugs like Cellcep, which I found out is an immunosupressant. Or the Rituxmab, which i found out is a form of chemo like they use for treating cancer. I don’t want to have to be worried about getting cancer on top of CIDP. I just don’t know what to do anymore. The IVIG scares me too because it is very potent. I don’t get too much in side effects at this time but that could all change in the future. Also, I am so nervous about the fact that you can get other viruses through the IVIG infusions…have you ever read the brochure that Gammunex sends every month! They list all these awful things that can be caused by getting IVIG and they say you can even get the Mad Cow virus. That makes me very anxious! I have no options at this point but to take the IVIG and I am greatful that I am gettiing a good response but gosh, sometimes I wonder about all the drugs and the horrible things that they are probably doing to our internal organs. Did this CIDP doom me to a life of organ failure down the way… i won’t get to retire with my husband and live the dream we have always talked about. I will be an old lady with many health problems and expenses, if I make it to be an old lady. On top of not feeling well some of the time I have anxiety over this whole disease and my future living with CIDP. But my doctor wants to put me on MORE meds for the anxiety and depression. I don’t feel that more drugs is a good idea so I declined and am trying to work through things on my own. Sometimes I think less if better in the long run.
Thanks Jo. I will keep my dream alive no matter what! Dreams make us go on.
I had Hodgkin's Lymphoma (lymph node cancer) about 15 years ago and had a port put in. I absolutely loved it!!! I only had to use it for 6 mos and then they took it out. I wish I still had it. I've only had 2 IVIG sessions but they are 8 days each and I only get 15g a day. I cannot tolerate any faster than 25ml/hr so I sit there for 6-8 hours. My veins are still terrible from all the chemo years ago and now it takes 3 or more pokes every day I go in to get the iv started. The port doesn't feel anything like an iv. I didn't even notice it was there most days. If I have to have IVIG the rest of my life I definitely will have a port put back in. Just my 2 cents. If you have good veins and only get poked 1 time each visit you are truly blessed. That sure beats surgery for the port.
Sincerely--Rachel
chirpybirdy said:
Hi Mike,
I guess I am lucky. I only need one stick per time. I get 40 grams each time in one dose. But it takes about 4 - 5 hours to run it all in. They don't run it above 120 rate for the infusion so I don't get a headache. I would rather sit a little bit longer in the center to get the infusion slowly then deal with a headach that could last for days. I worry about my veins giving out down the road. I do not want a port if possible. I think it would gross me out and I would obsess over it. I hate the feeling of the IV in my hand for just a few hours... I could not imagine having an IV port in that never goes away. I just hope my veins don't give out for a long, long, time. I alternate hands and areas where the IV was placed each time.
Thanks for your information.