I have been receiving IVig infusions for the past 7 months for my CIDP. My neuro spec. wants me to start steroids or Imuran but they both sound risky. Has anyone had experience with these drugs and their side effects. My local neuro wants me to start a high dose anti-inflammatory med instead or maybe even try nothing for awhile??? Will an anti-inflammatory suppress my immune system?? Any one know about this?? This is all so confusing and i don't know which path to choose. they all sound bad!
I am new here and would appreciate any help/advice/support...thanks so much
Hi sweetheart..i have been on the Immuran and it has made me extremely sick to my stomache and i had some hair loss as well. I found that cell cept is a much better medince to lower your immune system. Its a drug usually used by transplant patients that lowers their immune system so thier body will accept the new organ so that their body doesnt attack it. But in patients like us we have a extremely high immune system that attacks our nerve endings killing them off. Steriods such as predisone is a standard treatment for us that have cidp but can cause extreme weight gain and of course the problems that come with that. I have diabetes myself and it ran my blood sugars up extrememly high making me throw keytones but i also have another rare disease as well. The predisone did help ..i felt good while taking it but it effected my diabetes to bad.Dont listen to them that say wait and see cause this stuff can cause soo much permant damage. Research and be highly involoved in Your treatment cause it can progress rapidly and cause so much permant damage!!
Oh thanks Amy...I will talk to the docs about cell cept....I am also wondering if the ivig is just helping my symptoms and not the disease progression and if that is why the drs. want me to start on an oral med of some kind. Guess I will talk to them about tht too.
Hi Lou, Good info from Amy...I would just add that yes, there is risk with long term use of steroids, but the cellcept acts as a boost allowing us to get by with less of the steroids. Those well known risks of steroids are usually offset by the fact that it is extremely effective in keeping our immune systems in check. Once the immune system is supressed and no longer attacking the nerves, they should begin to heal and regenerate. Like my neuro has said to me more than once - "steroids are your friend". Still, we are slooooowly tapering down the daily dose of prednisone.
I just started Prednisone two days ago, reluctantly. I am very concerned about the weight gain. My inactivity over the last 5 months and not knowing what I could do that wouldn't further aggravate my bulging disk in my low back, has caused me to put on 35 pounds I didn't want or need. Now Prednisone too? I know it's supposed to be helpful but I don't see how me gaining tonnage will be so beneficial to me. I've had issues with swelling of feet and legs particularly in the last few months so I know that some of the weight gain is water. I am not able to get the IVIG at this time because I lost my insurance just about the time they dx'd me with CDIP... Timing is everything right? But they wanted to put me on something right now as I wait for SSD or Soc Services Dis to come through with Medicaid for me. So I began 60 mg Prednisone two days ago. I called and asked the pharmacist, because it came in 20 mg tabs, if I had to take it all at once? Or could I spread it out over the day... he told me what ever works best for me, so I chose the latter. And in just two days, I've dropped 7 pounds! Going the bathroom many many times a day and night tells me I was right and it was largely the water reinforced my thinking. I don't know if its because I'm spreading out the dosage? or what. I do not know if this will continue and the weight will blow me up when they wean me back off it? In the meantime I've been very careful with what I eat, hoping that helps some more. Does the slowwwwwwwwwwwwwwly tapering off the Prednisone help reduce the weight gain? Many questions... so few answers sometimes as we are all different.... yet connected in a CIDP sorta way. ~ Sis
Hi Lou, I was diagnosed with CIDP one year ago. The doctors started me on oral medications, 80 mg of prednisolone and 150 mg Imuran daily. I do believe it stopped the progression of the disease but after 4 weeks I started having some pretty serious mental side effects from the steroids. another 4 weeks and I had to be hospitalized. I was weak, feverish and had lost my love for life. My husband found a specialist who, after taking me off Imuran, started me on IVIg (Gamunex)I was slowly weaned off of Prednisolone and now they are weaning me off IVIg too, to be given as needed, hopefully never again! I exercise everyday whether I feel like it or not, I watch what I eat, and I tell myself that I am strong and will beat this! I know many of our friends with CIDP take steroids for pain and inflammation and it will make you feel like a kid again but it is not a long term solution either…the most pain I have had through this whole ordeal thus far was from predisone withdrawal…for me it was extremely painful and lasted a good 3 months. IVIg has helped me tremendously. But, we are all different as we already know. Good luck!
Thanks, Jeff...My local neuro has suggested going on a drug holiday??? Stopping IVIG and not adding anything else for a while....he also suggested adding NSAID in a high dose instead of steroids or immuran??? Any thoughts on that?
Jeff said:
Hi Lou, Good info from Amy...I would just add that yes, there is risk with long term use of steroids, but the cellcept acts as a boost allowing us to get by with less of the steroids. Those well known risks of steroids are usually offset by the fact that it is extremely effective in keeping our immune systems in check. Once the immune system is supressed and no longer attacking the nerves, they should begin to heal and regenerate. Like my neuro has said to me more than once - "steroids are your friend". Still, we are slooooowly tapering down the daily dose of prednisone.
Thanks Jeez....it surely seems like all of this effects everyone differently,,,,it is so confusing....I hope everything keeps getting better for you. I am on IVIG and have been for the past 8 months...it seems like it's helping, but my doc thinks it will lose its effectiveness eventually...did your docs say anything about that??
Jeez said:
Hi Lou, I was diagnosed with CIDP one year ago. The doctors started me on oral medications, 80 mg of prednisolone and 150 mg Imuran daily. I do believe it stopped the progression of the disease but after 4 weeks I started having some pretty serious mental side effects from the steroids. another 4 weeks and I had to be hospitalized. I was weak, feverish and had lost my love for life. My husband found a specialist who, after taking me off Imuran, started me on IVIg (Gamunex)I was slowly weaned off of Prednisolone and now they are weaning me off IVIg too, to be given as needed, hopefully never again! I exercise everyday whether I feel like it or not, I watch what I eat, and I tell myself that I am strong and will beat this! I know many of our friends with CIDP take steroids for pain and inflammation and it will make you feel like a kid again but it is not a long term solution either....the most pain I have had through this whole ordeal thus far was from predisone withdrawal...for me it was extremely painful and lasted a good 3 months. IVIg has helped me tremendously. But, we are all different as we already know. Good luck!
Thanks, Jeff...My local neuro has suggested going on a drug holiday??? Stopping IVIG and not adding anything else for a while....he also suggested adding NSAID in a high dose instead of steroids or immuran??? Any thoughts on that?
Well Lou, I would have to defer to the wisdom of your neurologist. I did not respond to IVIG, but did to plasmapheresis. However, after the initial series of treatments every other day for a week, I have not had any more - only prednisone and cellcept.By taking a break from the IVIG, maybe he hopes to see how your system reacts...will you continue to improve? stay the same? start to get worse?
As I mentioned, we are slowly tapering down the prednisone dose ~ now at 20mg/day. Since it stays in the body a long time, changes in dosage take time to be noticeable. For that reason, my neuro will keep me at this dose for roughly 3 months until my next exam. It will be up to me to be on the lookout for any signs of reversal.
Since NSAIDS are non-steroidal anti inflammatory drugs, and we have an inflammatory induce condition, I see why he may try them instead of the steroids, especially if the steroids have caused you problems. But if you have not been on the steroids, why is he not trying them? They are effective,cheap and you'd have to be on them for a long time for the negative side effects to be more worrisome than CIDP. At least, that is how they explained it to me.
I think you really need to be prepared for your next visit with your neurologist. Write all questions down so you don't forget to ask, and be sure to write down his answers. Sometimes the appts. go fast and it helps to remember all the info that comes your way.Whenever the Dr. says something you don't fully understand (they can't help it,it comes with all those years of school!) ask for clarification. He will respect that and it lets him know you want to be fully informed and taking an active role in your treatment. My wife comes along when she can,too and it really helps to have two sets of ears.
I am working towards a “drug holiday” at the moment. My IVIg treatments were spaced 6 weeks apart, my next treatment will be after 11 weeks. I do not feel I need any treatment anymore, but my doctor insists we taper off slowly. The nerve damage is there and will need to heal, but the progression has stopped. You know, it is possible that you really don’t need any more drugs. My neurologist has another CIDP patient that has not had treatment in 4 years. Don’t be afraid and don’t blame every little ache and pain on the disease! Get moving and forget about it! You will know if you need another dose
Lou said:
Thanks Jeez…it surely seems like all of this effects everyone differently,it is so confusing…I hope everything keeps getting better for you. I am on IVIG and have been for the past 8 months…it seems like it’s helping, but my doc thinks it will lose its effectiveness eventually…did your docs say anything about that??
Jeez said:
Hi Lou, I was diagnosed with CIDP one year ago. The doctors started me on oral medications, 80 mg of prednisolone and 150 mg Imuran daily. I do believe it stopped the progression of the disease but after 4 weeks I started having some pretty serious mental side effects from the steroids. another 4 weeks and I had to be hospitalized. I was weak, feverish and had lost my love for life. My husband found a specialist who, after taking me off Imuran, started me on IVIg (Gamunex)I was slowly weaned off of Prednisolone and now they are weaning me off IVIg too, to be given as needed, hopefully never again! I exercise everyday whether I feel like it or not, I watch what I eat, and I tell myself that I am strong and will beat this! I know many of our friends with CIDP take steroids for pain and inflammation and it will make you feel like a kid again but it is not a long term solution either…the most pain I have had through this whole ordeal thus far was from predisone withdrawal…for me it was extremely painful and lasted a good 3 months. IVIg has helped me tremendously. But, we are all different as we already know. Good luck!
Just so there is no doubt, I will say up front that I could be wrong.... However - having read many discussions on this site I get the impression that steroids (prednisone etc) are the "poor man's" alternative to IVIg.
IVIg is very expensive so if the patient is in the unfortunate position where the cost can not be covered, the docs go the less expensive alternative. The only other routine connection I can see is where the patient has a problem with IVIg (some severe adverse reaction - generally not common) so the alternative is used.
Personally (I am on IVIg) I would run a mile if ongoing prednisone or other steroid was suggested - just too many potentially nasty side effects.
Hi Michael, I agree with you and would be running right behind you if my doctor suggested taking me off IVIg in favor of prednisone or other steroid. I have been told IVIg can cure CIDP if you respond to it.
Michael C Stark said:
Just so there is no doubt, I will say up front that I could be wrong… However - having read many discussions on this site I get the impression that steroids (prednisone etc) are the “poor man’s” alternative to IVIg.
IVIg is very expensive so if the patient is in the unfortunate position where the cost can not be covered, the docs go the less expensive alternative. The only other routine connection I can see is where the patient has a problem with IVIg (some severe adverse reaction - generally not common) so the alternative is used.
Personally (I am on IVIg) I would run a mile if ongoing prednisone or other steroid was suggested - just too many potentially nasty side effects.
Cure is perhaps taking the benefit of IVIg a bit far. For most it stops more damage and for most it can repair damage but only if the damage has not gone too far. For some that tipping point means "cure", particularly if the original problem trigger has gone away so the damage cycle does not continue. A lucky few are "cured" - but they almost certainly still have a percentage of dead nerves (they get by very well with those they have left so feel quite A-OK).
Jeez said:
Hi Michael, I agree with you and would be running right behind you if my doctor suggested taking me off IVIg in favor of prednisone or other steroid. I have been told IVIg can cure CIDP if you respond to it.