I was diagnosed with CIDP in 4/12 and have been getting 45g of IVIG for a year and now every 10 days. My progress has been a little up and down but mostly up and for the last two months for 7 or 8 days after my infusion I feel stronger I shake less and have less pain it feels great like the treatments are really working and then I go downhill until my next infusion and then repeat the cycle. That is until the last two infusions that seem like they didn't work at all and I have really gone downhill bad. Has anyone gone through something like this or know if this is normal. I'm confused and a little sacred.
Sorry to hear that,Rick. I know how it is...the confusion IS the scariest part.
The way they explained it to me was that I would know it if my cidp is having a regression.In other words, they would have to do their testing, but I would already know due to increased weakness or something else.
I also have been led to expect it to try to come back - guess that's where the "chronic" part comes in. ;)
Are you on any other meds besides the IVIG? If so, maybe your neuro could adjust the doses to fight it off.
Good luck,my friend, and get your butt to your neuro asap.
Exacerbations are hard and scary. I have had doses that seemed not to have worked. I'd also call the neuro and try not to panic. Have you changed any medications, dental work, allergies, or could there be an underlying infection somewhere to spike your immune system? Sometimes we can't find the reason for the setback and adjustments have to be made. I've gone through it too and it turned out o.k..
I relate to what you have said. I'm going thru the same thing currently. I'm going to talk to my Dr. about trying different dosages and changing the frequency of my IVIG's. I just wanted to let you know that I, and am sure others, experience the same thing. Good luck !!!!
I'm doing the same thing, I'll be seeing my neurologist on the 20th of this month and I'll be telling him I can't sleep for 18 to 20 hours a day, it's driving me nuts!! I need to try my infusions closer together or I'll end up sleeping 24 hours out of the day. Gary
Rickinmo,
Any news? I was thinking about you and frankly, myself also. Ha ha. I hope you are not experiencing a regression of the disease and get back to regaining your strength and abilities.
Your post made start looking for signs of backsliding in my own case, and I really don't want to start thinking about getting weaker. I am pushing to get ready to go back to work. In fact, tonight I saw my old boss and it sounds like there may be an interesting position opening up for me. I have not worked for one year as of the end of this month, so since I have long exceeded the "medical leave" allowed, I am no longer officially employed there. However, after 27 years of working for them, I guess they know me well enough to find something for me to do. Even though the job won't pay as well as my old position (commissioned sales), I would no longer have to spend hours and hours behind the wheel. It is a desk job, so it should be no problem physically.Plus, I would get back on their health insurance!
That makes me feel good to know that there is still some loyalty toward long term employees in the business world.
So like I said, you made me wonder about my own progress and what lies ahead, so I thought I'd let you know that I was thinking about you and hoping you are fighting on.
best wishes!
I'm really scared too! I'm getting ready to start my first IVIG next week! I am afraid that I might be really sick afterwards. How soon does it actually help you? Does anyone else get worse with the weather. Sometimes I can't even get out of bed.
Hi Rick, I too was diagnosed 4/12 and since then have been receiving higher doses of IVIg (Gamunex 10%) less frequently. Currently I am being given 500mg at 8 week intervals, have gone as long as 12 weeks between treatments. I am trying to go as long as I can without it. Be strong and don’t let this disease steal your joy! I notice stress plays a major role in how I feel…and water. When I am dehydrated I hurt all over…so my advice, stay cool, calm and collected and drink, drink, drink (water, that is:-D)
Hello there, I totally empathize with you as I was in the same situation. Unfortunately, you and I must have the recurring relapsing type of cidp.
I would strongly recommend you ask your neuro to try you on plasma pheresis plus some prednisone. I too, became refractory to the ivig after 15 months am now now back to stable after going on Plasma exchange plus prednisone. I've relapsed 2x, but within 5 - 7 treatments, I'm good to go again.
I was on 50m g. of prednisone for a month, than down 10 mg. every month. It's more invasive, but it really did work and my body responded quite well. Don't give up... Hope this helps you.
I, also have relapses. When I do now, ( through trial and error), I’m given large doses of prednisone alone and it was enough to snap my body out of the recurrence. I’m unable to have plasmapheresis because of being Igg and Iga deficient. I’ve never discussed getting immunoglobulin injections. I did not know this was an optional treatment. I just started experiencing severe knee pain on the back of my knee joint, enough to wake me up and crying that it hurt so bad. Also, I’ve been dropping things in my right hand lately. I really did not connect these two things with a relapse. It seems so hard to get information about C.I.D.P. thank you for the info to look this up.
IVIG really helped my situation on the onset of being diagnosed with cidp. it took 19 days for me to be able to walk and balance. no real side effects, except for occasional headache and being tired the day after. goodluck.
ltrain said:
I'm really scared too! I'm getting ready to start my first IVIG next week! I am afraid that I might be really sick afterwards. How soon does it actually help you? Does anyone else get worse with the weather. Sometimes I can't even get out of bed.
I concur almost entirely with this account. I do not have a lot of pain but I will try to drink more water. I am supposed to anyway because I am prone to kidney stones. The IVIG does seem to be working. I have gone as long as 3 months and am pushing it to 4. yanman48
Jeez said:
Hi Rick, I too was diagnosed 4/12 and since then have been receiving higher doses of IVIg (Gamunex 10%) less frequently. Currently I am being given 500mg at 8 week intervals, have gone as long as 12 weeks between treatments. I am trying to go as long as I can without it. Be strong and don't let this disease steal your joy! I notice stress plays a major role in how I feel...and water. When I am dehydrated I hurt all over....so my advice, stay cool, calm and collected and drink, drink, drink (water, that is:-D)
Hi Rickinmo, My name is Moses and I've been diagnosed with GBS/CIDP in 12/06. Since then I've had 16 relapses and my last one was on of Jan.31,2013. I have a question for you. Have your doctor's tried Plasma-pheresis treatments when you were first diagnosed?
My husband has suffered tremendously with CIDP..he did have the IVIG treatment and then had a flair up right after. It didn't help him; eventhough it helps a lot of people. They actually thought it was an allergic reaction. Soon after he went in and got a 5 Plasma exchange treatment and that took the swelling way down, not to mention the severe pain. Sometimes these treatments are interchangeable. Only your Neurologist can advise. Hope this helps. My husband suffers quiet a bit, and we love how the Plasma exchange helps him.
my answer to your question is yes. while in the hospital I had 6 or 8 treatments of plasma-pheresis which got me to pt for 2 weeks. 2 weeks after leaving the hospital I relapsed and started ivig on an almost identical plan.
The New Me said:
Hi Rickinmo, My name is Moses and I've been diagnosed with GBS/CIDP in 12/06. Since then I've had 16 relapses and my last one was on of Jan.31,2013. I have a question for you. Have your doctor's tried Plasma-pheresis treatments when you were first diagnosed?
I've been having IvIg treatments for 2 yrs now, with little progress, actually I have been getting worse, but I'm not sure if the treatments are working and if they are maybe it would be progressing faster without the ivig, But I am definitely not getting better, I'm still working, I am a computer systems manager, and I have been hiding the fact that I cannot really do my job, luckily I have friends at work that pick up the slack for me, without whom, I certainly would have been fired, if that's even legal.
Is CIDP a disease that's eligible for permanent disability??
I too didn't think the IVIG was helping me. My Dr. gradually increased the dosage, and I'm now on 70g of IVIG, every 3 weeks, and the increase has made a significant difference. Good luck at the Mayo. Would love to know what they have to say about your condition and treatment.
you can be put on disability if the CIDP gets too bad. My husband did.
crumb5150 said:
I've been having IvIg treatments for 2 yrs now, with little progress, actually I have been getting worse, but I'm not sure if the treatments are working and if they are maybe it would be progressing faster without the ivig, But I am definitely not getting better, I'm still working, I am a computer systems manager, and I have been hiding the fact that I cannot really do my job, luckily I have friends at work that pick up the slack for me, without whom, I certainly would have been fired, if that's even legal.
Is CIDP a disease that's eligible for permanent disability??
my husband had to go on disbility, because of CIDP. Your Dr. should be able to advise you on that. P.S. this post says Marv, but my name is Mary. sorry.
I believe accommodation would be the first line of defense before disability. It also depends on what country you live in and the rules of the state or province. Consultation with a lawyer will cost you nothing and give you some direction. Gary