I am so thankful for the opportunity to discuss CIDP on this site! Here's my question: I know flu shots are something GBS/CIDP patients should avoid, but what about the Shingles vaccine? Anyone gotten one- what are the side effects, does it interact with immunosuppressant drugs, just what can I expect if I get one? (I really don't want Shingles with everything else we deal with!)
Sharon
Hi Sharon,
I know nothing about the shingle vaccine, but after so much problems, I refuse the flu, pnuemonia, and at this point any vaccine. I was diagnosed with CIDP about 3-4 years laters, AFTER I had the one and only flu shot I ever had. Symptoms started about a week after the flu shot. Make sure your doctor is familiar with the cidp before you get any shots.
I am to the point where I ask alot of questions before I agree to anything anymore. Hmu if you want to talk.
Chris
I got a flu shot last Oct. was officially diagnosed with CIDP in Dec. I broke out in shingles on Christmas Eve(lucky me) It was awful, I don't know if CIDP makes you more susceptible to this virus, but stress seems to play a part in so many things. I would do a lot of research before introducing any more viruses (dead or alive) into your body. I am very interested in a professional's opinion who is educated in CIDP.
I also got CIDP one week after getting the H1N1 in 2010. I was perfectely healthy and never had any problems. Now i am sickly and all because I tried to protect myself from getting sick. I wish I would have gotten the flu instead. At least I would have gotten better. So I will never, ever get another vaccination again. Nor will my 8 year old daughter. I am anti-vaccines now. Not worth the risk in my mind. Too many horrible reactions are listed.
Nancy, I too would love a professional who understands this disease. I know the doctors where I live don't. You would be suprised how many Doctors I have educated with this disease. After a long search, I found a dr about 40 miles away in Pittsburgh who has published articles, treats, specializes in CIDP. The wait for my appointment is 7 months, but after 8 or 9 years, what is 7 months?
I also agree that we have to watch our stress. But then, why would we be stressed??? (just kidding). This disease and the lack of knowledge causes more stress than imaginable....
nancy said:
I got a flu shot last Oct. was officially diagnosed with CIDP in Dec. I broke out in shingles on Christmas Eve(lucky me) It was awful, I don't know if CIDP makes you more susceptible to this virus, but stress seems to play a part in so many things. I would do a lot of research before introducing any more viruses (dead or alive) into your body. I am very interested in a professional's opinion who is educated in CIDP.
awesome!
There is definitely a link between vaccinations and CIDP/GBS (I know as that is how I have got CIDP), Yet I also know that the docs in the UK don't acknowledge this and despite my insistence they want me to have jabs for a holiday. From my survey about 10% attribute it directly to vaccinations.
I'm sorry you have this I hope you go into a permanent remission. What were your first symptoms? My son started tingling hands and feet 3 weeks after his shots.
chirpybirdy said:
I also got CIDP one week after getting the H1N1 in 2010. I was perfectely healthy and never had any problems. Now i am sickly and all because I tried to protect myself from getting sick. I wish I would have gotten the flu instead. At least I would have gotten better. So I will never, ever get another vaccination again. Nor will my 8 year old daughter. I am anti-vaccines now. Not worth the risk in my mind. Too many horrible reactions are listed.
About 12 days after the H1N1 vaccine my right felt like it was falling asleep. I thought i pulled something. But it started to progress up my foot and into my ankle. So I went to my physician. She also though pinched nerve so she took a spine Xray. All looked good so she also did an MRI. Still looked normal. So she recommended I see a neurologist. By then I was starting to have some tingling and numbness in my other foot too. The neurologist did a Nerve Conduction Study and EMG (Muscle study) and said that there was evidence of demylination(selling?). She was thinking CIDP right off. I was very upset once I did some reading on what CIDP was and couldn't believe I had it. We did some more tests, a whole blood panel and a new MRI of the spine and finally a spinal tap. The spinal tap was what confirmed CIDP. I had increased protein in my spinal fluid. We started Pred right away and i hated how i reacted to pred. So we started IVIG and I have been doing good on the IVIG now for a year and a half. Keeping my symptoms very minor and managing pretty good. I hear you should get diagnosed as quick as possible and start treatment before permanent damage to the nerve axons occurs. It would not hurt to have him see a neurologist if the tingling is still there and not improving. Better safe than sorry.
Hi All,
Oh Boy! I hope I am not going to be in trouble... I do not remember anybody telling me not to get any vacationations...I just got one yesterday. I went for a appointment with my primary Doc and she asked me if I wanted to get a vac. while I was there. I said sure... I am one who sort of ignores when I have symptoms unless symptoms are persistant and really buggs me. I have been diag. for 4 years now with neuropathy and about a year and a half ago with CIDP (after a spinal tap). I have got flu vac. every year - for 4 or so years...maybe that is how I got this in the first place??? No body knows how I got this, and every year I have noticed some symptoms were bugging me a bit more, but I thought that was supose to be that way, or that is just the way it is for me.... Can some one tell me about getting the vac. and how long symptoms come along? Should I go see my Neuro and tell him??? I know I sure will inform my primary Doc about this! She does not know about CIDP and neuropathy very much, obviously! She was also going to give me the vaccine for Shingles too!!! I am glad she decided not to at this visit!!!
Thank you for any & all your help with this!!!!!
Gods Blessings to All
Pauline
Oh flippin’ eck. I had my flu jab on friday as I have a ‘neurological’ problem. I have felt even more knackered this week and even a bit like I’m starting with a cold but had been told the flu jab was a good idea. I’ll have to have a word with my neuro, hope it won’t make things worse. My walking has been worse this week, definitely…
There is still a lot of controversy about vaccines in CIDP patients. Some knowledgeable professionals recommend the pneumonia vaccine, and the Zostavax (shingles). Personally, I recommend avoiding all vaccines, particularly if your symptoms/disease began after one. However, you have to weigh the risks versus benefits of each vaccine. For instance, if you have severe pulmonary disease, you might consider the pneumonia vaccine, although personally, I would avoid them all.
Victoria, Looks like the 2 of us will see what happens in the next 2 - 4 weeks or so....GREAT for us!!!
This is funny, TODAY I just heard or just noticed a T.V. commercial for the flu shot for people that has GBS should not get the vaccine - I wish I would have heard that commercial a week ago! Do ya think GBS is close enough to CIDP? or does anybody think that they should announce on that commercial CIDP patience (sp) be included WITH GBS. OR is it that they don't care b/c we are few???
Please excuse me - I am ANGRY!!!!! I guess I need to STOP depending on the DOC's to know what I need. I need to take notes and learn to depend on MYSELF and stick with you ALL here b/c you all are the best educators!!!
Nobody can know more than people with CIDP living it!!!!!
THANK YOU EVERY ONE!!!!!
Pauline
victoria said:
Oh flippin' eck. I had my flu jab on friday as I have a 'neurological' problem. I have felt even more knackered this week and even a bit like I'm starting with a cold but had been told the flu jab was a good idea. I'll have to have a word with my neuro, hope it won't make things worse. My walking has been worse this week, definitely...
I often question why no one is talking about CIDP in the media.I think the UK seems to have a better understanding.
Pauline said:
Victoria, Looks like the 2 of us will see what happens in the next 2 - 4 weeks or so....GREAT for us!!!
This is funny, TODAY I just heard or just noticed a T.V. commercial for the flu shot for people that has GBS should not get the vaccine - I wish I would have heard that commercial a week ago! Do ya think GBS is close enough to CIDP? or does anybody think that they should announce on that commercial CIDP patience (sp) be included WITH GBS. OR is it that they don't care b/c we are few???
Please excuse me - I am ANGRY!!!!! I guess I need to STOP depending on the DOC's to know what I need. I need to take notes and learn to depend on MYSELF and stick with you ALL here b/c you all are the best educators!!!
Nobody can know more than people with CIDP living it!!!!!
THANK YOU EVERY ONE!!!!!
Pauline
victoria said:Oh flippin' eck. I had my flu jab on friday as I have a 'neurological' problem. I have felt even more knackered this week and even a bit like I'm starting with a cold but had been told the flu jab was a good idea. I'll have to have a word with my neuro, hope it won't make things worse. My walking has been worse this week, definitely...
Tell me about it, I am waiting to see my Neuro on the 15th. It will have been over 2 months since my first (and only) IVIG treatment and I have just been left in limbo. My doctor doesn’t have a clue and just keeps saying ‘wait to see the Neuro’. Since, I am gradually losing the ability to walk even a few yards and I am getting very angry and feel abandoned…
Interesting question. This is a pretty controversial subject. I have read that some doctors don't allow any kind of vaccination, but others think the possible downside from getting the flu is worse than the risk of the shot. There doesn't seem to be any consensus.
I read once (wish I could find it now) that the flu virus is chemically similar to the myelin coating on the nerves, so when your body ramps up to fight the flu, it can sometimes go overboard and start attacking the myelin, too. If that is true, it would mean that a flu shot would be the only kind you would have to be concerned about.
My CIDP really showed up about a week after a flu shot (although I think it had been 'brewing' some time before that). So, my doctor absolutely forbids me to get another flu shot.
However, he did recently give me a pneumonia shot. I felt crummy for about a day after the shot, but don't seem to have any ill effects now.
Who ordered your 1st IVIG? This disease can be aggressive and it sounds like you need to be, too.(I usually recommend assertive over aggressive) If your family doctor isn't helping you, I would call the neuro office and explain your concern. If they won't help you keep making calls until you find help. Good Luck
victoria said:
Tell me about it, I am waiting to see my Neuro on the 15th. It will have been over 2 months since my first (and only) IVIG treatment and I have just been left in limbo. My doctor doesn't have a clue and just keeps saying 'wait to see the Neuro'. Since, I am gradually losing the ability to walk even a few yards and I am getting very angry and feel abandoned...
I agree with Nancy. My neurologist really put the fear of God into me. He told me that when I let myself get really weak, I might recover some or most of my function, but tend to lose some permanently. So, he put me on a regular IVIG schedule (every 3 weeks at first), but also told me that I could schedule a treatment on a day's notice any time that I felt I needed it. I did actually get treatments early a couple of times, when I felt myself losing strength, and it always helped.
I have gradually gotten better, and am now at 10 weeks between IVIGs. Believe me, it makes planning and conducting your life much easier.
I am also on Imuran, which is an immune suppressant. Don't know if that is what is allowing me to go longer between treatments, or if the disease is just running its course. But, I don't think I want to stop it, to find out.
nancy said:
Who ordered your 1st IVIG? This disease can be aggressive and it sounds like you need to be, too.(I usually recommend assertive over aggressive) If your family doctor isn't helping you, I would call the neuro office and explain your concern. If they won't help you keep making calls until you find help. Good Luck
victoria said:Tell me about it, I am waiting to see my Neuro on the 15th. It will have been over 2 months since my first (and only) IVIG treatment and I have just been left in limbo. My doctor doesn't have a clue and just keeps saying 'wait to see the Neuro'. Since, I am gradually losing the ability to walk even a few yards and I am getting very angry and feel abandoned...
My hubby and I went into the corner pharmacy to pick up my refill of potassium and the pharmacist asked if we wanted to get our shots, Tracey (my hubby) said no, I simply stated I couldn't have them, she asked why? I told her I have a neurological condition called CIDP, she said that I definitely need to stay away from any and all immunizations...Well, I for 1 am glad someone in the medical field is somewhat educated on this ugly disease!!!
I am a vaccine proponent and would not recommend that people without CIPD defer vaccine. I have some upper airway involvement and 10 days after my flu vaccine, my larynx closed (laryngospasms) intermittently for three days. The neurologist just said, "Some people just react poorly to the flu vaccine"--People with a history of Guillain Barre should not get the flu vaccine so I do not take it now." CIPD is the chronic form of this disease. GBS is an acute inflammatory demyelinating disease. If you are on IVIG, you may not be as likely to get as sick with the flu. Be careful though as pertussis is definitely circulating.