Help! I was just wondering if this was common or just happening to me. I woke up with the beginnings of a sinus infection on Monday, and as it has been working its number on me, I find my CIDP symptoms are getting worse, especially the burning. My walking is getting worse again instead of better. I’ve been seeing slow but steady improvements since my plasmapheresis treatments about 2 weeks ago, and I’m so worried that this is causing a setback! Ugh!
Paula
Paula,
i seem to have been lucky in that i have not gotten any other symptoms. With that said, i do periodically get times when i get flushed and hot and my wife asks me if i am ok. i have been receiving IVIG, and I think that i am finally getting the dose close to maximize the benefit, while reducing the side effects.
hopefully these events don't last long, and unfortunately it is just our bodies fighting the infection and the treatment. when my IVIG was 1mg/kg, i seemed to have a lot more side effects, like you mention.
now on my second set of 12 doses every 3 weeks, i now receive .4mg/kg, and i seem to be having less events like you mention. after 2 more doses, i am going to ask my doc if i can increase the dose just slightly, to make sure that i am controlling my body, while not have too many side effects.
Good fighting
I wouldn't be surprised if your sinus infection worsens your CIDP symptoms. If I get too tired my legs shake and start to hurt. If I get stressed my legs and arms get the burning needles and pins pain. Your body is trying to fight the sinus infection which is tiring-do you think there is a connection? My suggestion is to try to get as much rest as you can (and drink tons of water) while you are fighting this additional battle. Have you seen a doctor about your sinus infection and are they working with your neurologist? Peace Nancy
Thanks for the replies, Jon and Nancy! And thanks also for the suggestions, Nancy. I haven’t seen a doctor yet for my sinus thing…I think it is more of a head cold than an infection. I was waiting for my Home Healthcare nurse who come in tomorrow (actually today) to get her advice.
I did feel better CIDP-wise today, so that’s good!
Take care,
Paula
Hi Paula,
I like Jon,really didn’t get sick while on IVIG but that being said, rest is probably the best thing you can do. When I overdo, I can medicate until I’m blue in the face but must rest to feel signicantly better. Get well and do ask your nurse.
I was just dx'd with essential tremors(like I need a new disease to add to CIDP) and all my other issues. But it explains the constant tremor of the right side of my body and my head. These tremors are exhausting, so they definitely made my CIDP worse. The good news is that my Dr. put me on Tramadol for nerve pain that has helped better than any of the other meds so far for the CIDP, and They started me on Primidone(not sure if I spelled it correctly) for the essential tremors.
The first day was bad, I was completely out of it, and we shall see how it goes as the week goes and dose increases. I am going to try and go to Johns Hopkins to be evaluated. With all my issues and doctors disagreeing on diagnosis and now a new disorder, I am about to pull my hair out.
Hi All,
I am one of the unfortunates who find IVIG does nothing. I fully agree that should you catch anything it makes my CIDP worse. I am sure I am no different from most and find the worst symptom the exhaustion which gnaws like something designed to floor you. The CIDP is now part of me and cannot be ignored so I except it as part of me but only a part, there is a large part of me that treats my CIDP as a small part of the whole and does not give it the satisfaction of being my whole life.
Keep fighting and here hoping for a pain free day for all
Ronnie
Hi Paula,
I have been fortunate, the only thing I have had since being diagnosed with CIDP is a series of colds. They do seem to make my symptoms worse (mainly fatigue). But I'm not sure that they are really making the CIDP worse. Maybe it is just a sort of additive effect: I always seemed to get fatigued when I got sick, maybe I just notice it more now that it is added on top of the CIDP. This whole thing is really hard to figure out.
Bill
Thanks, Bill…I think what you described is what happens to me.
Paula
Ronnie, I like your attitude, and hope that I can get there one day. That is my goal!
Thanks for the encouragement!
Paula
Hi All,
I am one of the unfortunates who find IVIG does nothing. I fully agree that should you catch anything it makes my CIDP worse. I am sure I am no different from most and find the worst symptom the exhaustion which gnaws like something designed to floor you. The CIDP is now part of me and cannot be ignored so I except it as part of me but only a part, there is a large part of me that treats my CIDP as a small part of the whole and does not give it the satisfaction of being my whole life.
Keep fighting and here hoping for a pain free day for all
Ronnie
My neurologist recommended medical marijuana to control pain and decrease the intensity of the signs and symptoms. I was instructed by a grower to go with a pure indica. For the first time in 5 years my pain is virtually gone. Your pain goes from a 10+ to a 1 or 2 after a couple of days. It is a miracle! I was so sceptical, in addition I am a retire police officer. Anyone who has CIDP and intense pain please consider it. Truly has saved my life.
Now when I get a cold or flu it doesn’t add to my illness.
I,d like to ask mark how it,s possible to get medical marijuana in a state that hasn,t legalized it. I have Cidp, the pain can be intense. I,ve heard so many stories where people have found relief. Any ideas? Thanks, j
jerri
my information is not intended to diagnose, treat or advise, but i am in the drug development business and remember a company that developed a tablet for of THC, known as Delta 9 THC. The brand name is Marinol and is made by Abbott Pharma, now called Abbvie. this is the active ingredient that should provide relief similar to the medical form. ask your doctor what he/she thinks. case studies on the web showed that this form, also called Dronabinol, were more effective in pain relief that the actual product. Like i said though, this is all public information and please review the websites to see what you think, and also get advise from your doc. Hope this helps. please don't just listen to me. again, i am just providing you a direction to public information and not providing any medical advise
Jon said:
jerri
my information is not intended to diagnose, treat or advise, but i am in the drug development business and remember a company that developed a tablet for of THC, known as Delta 9 THC. The brand name is Marinol and is made by Abbott Pharma, now called Abbvie. this is the active ingredient that should provide relief similar to the medical form. ask your doctor what he/she thinks. case studies on the web showed that this form, also called Dronabinol, were more effective in pain relief that the actual product. Like i said though, this is all public information and please review the websites to see what you think, and also get advise from your doc. Hope this helps. please don't just listen to me. again, i am just providing you a direction to public information and not providing any medical advise
Hi again, Paula,
At both of the hospitals I have used since my CIDP diagnosis, I was told that any illness, like a cold or the flu, will cause the antibodies in my blood to increase in order to fight the infection. But, since CIDP is an autoimmune disease caused by my antibodies thinking my myelin sheaths are the enemy, they attact the nerves instead. Therefore, any illness will cause a recurrance of the CIDP symptoms.
This is why I couldn't go to my daughter's house on Christmas, as they were having a flu incursion that hit all 5 of them. I did go over after the kids were asleep and visited through the open kitchen door while standing in the garage. You get VERY creative when you have CIDP!
I have been told to be very cautious about going anywhere there are large groups of people after a plasmapheresis treatment when I was getting those. I continue to follow that advice now that I am on IV steroid treatments. There is just a bigger chance of catching something when your immune system has been suppressed. So, I grocery shop and make sure that my meds are stocked up before I have a treatment.
The idea of it being dangerous to be around someone with the flu makes sense. One of the theories of the cause of CIDP is that the body gets exposed to the flu virus (either by getting the flu, or by getting a vaccine), and it then produces antibodies to fight the flu. But, the flu virus has a chemical structure not too different from the structure of the myelin, so if the immune system goes slightly haywire, it can start to attack the myelin, too. I once saw a drawing comparing the structure of a virus to that of the myelin, and they were pretty similar. My CIDP came on about a week after getting a flu shot, so that would be consistent with this theory. For this reason, I am forbidden to ever get another flu shot.
But, unless other viruses are also similar to myelin, then being exposed to those viruses should not be a problem. I don't know how similar viruses are to each other, and would like to hear from a doctor, or someone who knows.
I am currently taking Imuran, which suppresses my immune system, so I am careful about being exposed to sick people. But this would add another layer to my concern.
Just from personal experience-I have never had flu or a cold since being on IVIG. I used to work around elementary school age children. You would think if my immune system was suppressed I would have been sick a lot. I thought IVIG blocked the immune response because of antibodies from donors? Wouldn’t it also block the immune response from viruses?? Maybe that is wrong? Will have to look this up.
Thanks, Rhonda! All of you have been very helpful.
Paula
Hi again, Paula,
At both of the hospitals I have used since my CIDP diagnosis, I was told that any illness, like a cold or the flu, will cause the antibodies in my blood to increase in order to fight the infection. But, since CIDP is an autoimmune disease caused by my antibodies thinking my myelin sheaths are the enemy, they attact the nerves instead. Therefore, any illness will cause a recurrance of the CIDP symptoms.
This is why I couldn't go to my daughter's house on Christmas, as they were having a flu incursion that hit all 5 of them. I did go over after the kids were asleep and visited through the open kitchen door while standing in the garage. You get VERY creative when you have CIDP!
I have been told to be very cautious about going anywhere there are large groups of people after a plasmapheresis treatment when I was getting those. I continue to follow that advice now that I am on IV steroid treatments. There is just a bigger chance of catching something when your immune system has been suppressed. So, I grocery shop and make sure that my meds are stocked up before I have a treatment.
Uncle Bill, your explanation above is why I’m afraid to get a flu shot this year. My neurologist wants me to get it, but I haven’t yet because of my fear of things getting worse with my CIDP. UGH!
Paula
Uncle Bill said:
The idea of it being dangerous to be around someone with the flu makes sense. One of the theories of the cause of CIDP is that the body gets exposed to the flu virus (either by getting the flu, or by getting a vaccine), and it then produces antibodies to fight the flu. But, the flu virus has a chemical structure not too different from the structure of the myelin, so if the immune system goes slightly haywire, it can start to attack the myelin, too. I once saw a drawing comparing the structure of a virus to that of the myelin, and they were pretty similar. My CIDP came on about a week after getting a flu shot, so that would be consistent with this theory. For this reason, I am forbidden to ever get another flu shot.
But, unless other viruses are also similar to myelin, then being exposed to those viruses should not be a problem. I don’t know how similar viruses are to each other, and would like to hear from a doctor, or someone who knows.
I am currently taking Imuran, which suppresses my immune system, so I am careful about being exposed to sick people. But this would add another layer to my concern.
This is a hard decision. If you get the shot, there is a possibility that it will trigger a relapse. But if you don't get the shot, you might get the flu, which could also trigger a relapse, and in any case, the flu itself could be very bad. Since my CIDP became evident shortly after a flu shot, my doctor does not want to take the risk, and advises against a getting another shot. But I have heard some doctors say that the risk of the flu is worse than the risk of a relapse. I wish I know what to advise.
(Note that I say my CIDP "became evident." Looking back, I think I had some symptoms of CIDP long before it got so bad that I realized I had a serious problem. So, maybe the flu shot was just a coincidence. Or, maybe it pushed me over some threshold, and made the CIDP severe. Who knows what really happened?)
Bill