AnonymousMarch 25, 2010 at 5:55 pm
Hi All. I am at aa very very low point right now. I have been getting ivig treatments since 2001. These treatments took me out of, and have kept me out of a wheelchair. Over the last few years the recovery has gotten harder. We have played with the infusion rate..premeds etc. After this past treatment the recovery was worse. I ended up back in the hospital.. headache, confusion, shaking, nausea, fever,.. lots of confusion. Of course the er Dr. Knew nothing about cidp or ivig and suggested I just go home ( I could not walk or stop shaking ..but hey go home..) My family Dr.family came in and raised cain!! He admitted me and went to work at rehydrating me.. told the staff to give me what ever I felt I needed. I have an apt. with the specialist in May.. in vancouver ( 10hrs from where Ilive ) My Dr. has said no more ivig for me..too risky..next time could be a stroke or worse. Do not know what is next for me. I am starting to feel a bit better today.. tho all I want to do is sleep.. and cry. I am a single parent who has raised 4 kids with this illness. I only have one left at home. My disability is not enough to live on and my EI ( employment insurance) runs out in July so I must find some type of work soon..but w/out IVIG I do not know if I will beable to function.
Please help I do not know wht to do. I take amuniosuppressants and do like to take prendisone..looking into plasma exchange. What have other done when ivig no longer works??
Thanks for listening this disease is hard enough.. never mind going through it alone.
AnonymousMarch 25, 2010 at 6:58 pm
Of course you have to try the next step.
IVIG works for many, but not all people, (it didn’t work for me).
So, you go to the next step, to see if that will possibly work for you,
which is plasmaphereses.
You never know–it might work wonders for you.
I do hope so.
All the best,
March 25, 2010 at 8:31 pm
Hi Sonia, the steroids are not something you can do permanently, is pp an option? What imunosu pressant are you on? I think it is Gavol who is having the same problem with ivig and I think he is on cell cept. Has the brand changed? YOu can call the manufacturer and report the reaction. It would be interesting to know if you and gavol are both using gamunex, I think that is what he had. If so, I wonder if they are from the same lot? Just some ideas. To hold you, is it possible to do a round of pp as soon as possible? To clarify, has the ivig stopped working or was it a reaction? How about asking to check your blood to see if you are now allergic to ivig? Is the brand the same? Keep us posted
AnonymousMarch 25, 2010 at 10:33 pm
I know what it is like to get discouraged and cry, cry, cry. We on this board all know what it is like to get discouraged, so always come on this board whenever you feel like you need someone to talk to. I do get IVIG’s and they are helping somewhat, I still have a lot of pain and can’t get it under control. I have heard from my Neuro. that sometimes people can have a bad reaction to some brands of IVIG and then they need to be switched to another brand. Try asking your dr. if that would possibly help. Also, if you are not getting better, maybe a second opinion would be useful. My doctor wanted me on Cellcept along with IVIG, but I said no. I know it is hard going through this, especially if you are single with children, but try to keep a positive attitude even if things look bad. We are all here for you and any time you need a little nudge, just get on this board. I will keep you in my prayers and send you a hug;) .
Clare in Michigan
March 25, 2010 at 10:34 pm
Sonia, I’m so sorry to read what you’re going through. I can’t answer your question as I have only had PP as a treatment (tried adding in immunosuppresants, but my bod wouldn’t tolerate them). But I do want to say that although no one may be there with you physically, you’re not alone.
AnonymousMarch 26, 2010 at 5:17 am
I switched to sub-cutaneous Ig when it appeared that IVIg was going to kill me, either slowly by killing my kidneys and inflammation of the lining of my brain – or quickly via a heart attack or stroke. Things went fine for me for years then it seemed like my body just said NO MORE and started getting really sick with the IVIg… like you. The problem with those headaches is you really have to know what kind of headache it is… my meningitis headaches are/were an all over sort of prickly feeling, like somebody poured battery acid in my brain… any other type of headache and I was poised to flee to the hospital for fear of stroke.
Eventually my fear of the damage IVIg was doing to me outweighed my fear of switching to a new and potentially not as successful routine. My insurance company was thrilled I switched, it’s much cheaper for them. Once my doctor got the order in it took less than two weeks before I was starting the new routine. I have a separate thread called Sub-Q Early Returns are Good (or something like that) so I won’t repeat the details here but check it out and if it seems like something you could do ask your doctor for it.
The one thing I will repeat is that I have very few side effects from subcutaneous Ig. I have no headache, no kidney pain, no shaking, no fever (more so than I usually have anyway)… I do get nausea for which the doc prescribed Zofran but honestly I’d rather be queasy all day than feel as bad as I did on IVIg. There is no pill for feeling like a bus hit you but nausea I can deal with. Fortunately my doctor is open to suggestions and is letting me try the sub-Q, my quality of life has improved by at least 65% in the last 5 weeks that I’ve been on it. I no longer fear the sun, I no longer spend days shivering in bed after treatment, and I never have extreme ups and downs either… it’s all just steady as she goes with a few exceptions.
Don’t give up, you are the only one out there who can advocate for yourself and if you give up on yourself then there won’t be anybody. 😀
March 26, 2010 at 8:21 am
I wonder if charcoal pills would help with the nausea?
AnonymousMarch 26, 2010 at 3:05 pm
Thanks to everyone for your encourgement. Will definetly be looking into a few more things. I am feeling much better today…I think my antidepressants have kicked back in. Amazing what a few days of sleep can do. My head is feeling much more clear.
I will continue to investigate and fight the fight. Thanks again for the support.. do not know where I would be with out you.
AnonymousMarch 26, 2010 at 4:41 pm
I have been very discourage the last couple of weeks my IVIG was increase from 45 to 80 and I thought I would see improvements but I seem to be worse. My strenght seems ok but my hands are really bad and have stiffness and tightbness in my ankles, legs and knees. Started feeling the tightness in my legs (calf) right after infusion. The predisone seems to be making me crazy and was reduced from 40 to 30 last week and the Dr has order another dose of IVIG as a loading dose but waiting for Ins to approve it. I read on another thread I think from Julie that its not going to get her and I recalled when I was being treated for breast ca it wasn’t going to get me well I’m going to get that same attitude CIDP IS NOT GOING TO GET ME. Right now I’m going to stop yelling and crying and try and look at the bright side of things(My sister died 4 years ago and I asked for a sign from her or my deceased father a couple of hours ago and there was a message from Lovescats signed Clare Michigan. I’m from Michigan and the spelling is Clare so thats my sign and is here with me. Thanks I feel the best mentally than I have all week.
AnonymousMarch 26, 2010 at 8:44 pm
My son Ryan has done IVIG, PlasmaPheresis, prednisone, and now Cytoxan (chemo) the one that has worked for him is the Cytoxan.
he has been in a wheelchair for a year now and has had 3 cytoxan treatments and is up and walking again.
good luck to you I hope you find somthing that works for you soon
AnonymousMarch 27, 2010 at 9:00 pm
Thanks for all the imput. Ran into my Infsion nurse today. We had coffee..seemed kinda weird for her not to be sticking me with needles…. After 9 yrs you really do form a bond with these people. I asked her about the sub q . She said there is only one patrient in town who has started getting it with good results. Apparently it has already been discussed as to wether or not I qualify to receive it ( some times canadian medical can be a pain ) She thought it would work for me.. so off to the Dr. we go to get him to fight so I can get it. I am excited Julie that you figure it has improved your quality of life soo much..maybe I could get a life back that is not interrupted every 6 wks for 2wks. Hard to work hard for relation ships etc. But you all know the drill. Going to look into the chemo drug as well.
March 28, 2010 at 6:07 pm
I posted back to you on my thread earlier, but wanted you to keep after this thing. Over the years (since 1996) I have tried everything anyone has posted about and think the key to my ability to remain functional has been the willingness on my doc to try different medications, protocols and combinations of things. My best success has been PE with 500 mg iv solumedrol. Time frames have varied over the years from daily, to weekly, monthly, sometimes as long a six months between exchanges. Considering the significant muscle loss I had sustained over the years, I have been fortunate to lead a semi normal life.
A year and a half ago I was in a quick decline and was preping for a chair, but then saw the FDA approval on the new IVIG, Gamunex, which is processed with glycene rather than glucose. The clinical information seemed to indicate better results than traditional IVIG products, so I convinced my doc to try it in combination with PE and solumedrol ( I did not respond to other IVIG products in the past). This combination has kept me out of the chair, and actually helped me get stronger. This side effects from the last infusion is a bit discouraging, but then when you look back over the years, there have been a lot of discouraging times, but something different always seems to pop up and we get a new lease on things. With GBS in ’85 and the total imobility, I know all to well where the bottom really is, so word of.
encouragement, never ever give up or lose hope.
If you are not doing so, I strongly suggest you keep a diary of what happens and your reactions to various treatments, time sequences, ect. I have kept a diary since 96 when this all started and am able to discuss things with my doctor from a specific reference point which eliminates some of the guess work. Good luck to you and keep after it.
AnonymousMarch 29, 2010 at 8:45 pm
Thank you for your note. I have never had pe but have been asking for it for 3 yrs. Problem they do not do it where I live. I would have to travlel to vancouver, whicj is 10 yrs south from where I am ( Northern BC, Canada) I have no specalist where I am. We have one neuroligist here who is an idiot..The neurologist who diagnosed me moved. I do see some one every few years in Vancouver. I have an apt. with him in May. I have an excellent gp who helps me out alot.. but he is really out of his league. Right now I will do anything. Today I feel like crap.. cause yesterday I felt good and cleaned house and laundry and boughht groceries. I need to get a job my unemploymeny runs out in July. I do Get a disability pension but it is not enough to live on.. but my main priority is to get me heathy… ahhhh! Trying to Trust and have faith.
In may I will be pushing for something new.. anything.. The sub ig would be great cause it would. mean no trips to vancouver and I could work.
Thank you agin for the note… I really need the support as as much as people care they do not understand about the pain and frustration. I know there are people who are worse off than me.. but you know sometimes that does help me feel better.
March 30, 2010 at 7:25 am
Sonia, I’m praying for you along side Donna. Gary
AnonymousApril 1, 2010 at 12:19 am
Thanks for the prayers. I am having a good day.. finally!!
I have been a beleiver my whole life but this last round brought on a crisis of faith. When I look back over the last 21/2 weeks of hell I can see how He carried me through. Not sure how people without any kind of faith get through.
See my Dr next week.. hoping and praying for sub ig. I coud have a life. Kindaa forget what that is. I could work and not live in poverty!!
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AnonymousNovember 2, 2006 at 1:20 pm
My son Nate has been home now for 5 weeks.
He seemed really eager to excercise and walk at the hospital but since he has been home, he has all but stopped.
It’s a combination of his legs not coming back very fast and insurance problems.
The facility he was in did not nofity his insurance that he had been discharged. We did not find that out until last week. It has been taken care of now, but that has backed things up big time.
Because of that, his insurance had a therapist coming out to the house, but only for 3 weeks. Then the guy says he came all the allowable times and that I should take Nate to 24hr fitness????????
Nate is nowhere near ready to go that route and now he is feeling very discouraged and hopeless.
He also has fallen now 3 times. Once at the hospital, once in our living room while trying to move his wheelchair and once when the therapist was trying to have him squat in front of the kitchen sink.
I was behind him and I shoved the wheelchair under him just in time to have him sit on the edge of it.
That really scared Nate and he has only walked thru the bathroom since and nowhere else.
I talked to him yesterday and kind of got the picture about what is going on. I told him he needs to get past those feelings. I also told him he is not going to get better if he doesn’t move around. I know its easy for me to say that, not being in his shoes.
I think its going to take him awhile to get over those feelings.
I’m not sure what else to do.
AnonymousNovember 2, 2006 at 2:02 pm
Hi trudy, i know its hard to watch your son go thru all this stuff, you are doing great. all you can do is be there for him like you have been and be supportive. nate really has to do things his way, when he is ready to do them, be it today, tomorrow or in the future. it is important for him to be active-as active as he can be without over doing it the whole day. maybe he needs to come online and read what others are going through and ask questions and get the anger out and maybe get some ideas on how to get control back from people that have been through it. there is no reason to push him into doing things just because you know its the right thing for him to do-let him do it because its what he wants to do-its a way to get control of his life back. i go through it after each event i go through-i think alot of us do.
as for the pt, i think it was handled poorly, with the hospital dropping the ball and the ins not covering as much that is needed to get him up and going properly. and personaly i think he was pushed too hard by the pt at home if he he nate trying to do squats when he isn’t out of the wheelchair and able to walk yet first. i still can’t do squats and i am using a cane to walk so i don’t fall. squats are done after the patient is able to hold up his own body weight without the use of devices, and is able to walk without devices. squats don’t do squat for gbs people-there isn’t a big need for them in imediate recovery periods. and as for going to a gym—when nate is able to withstand hours of muscle use-yes it might help him get through some of the plateaus he will be going through, but until then it is not the best thing for him to be wasting his precious energy doing. gym people don’t know how to deal with gbs patients, they tend to forget about the severe fatigue that stays with the patients for along time afterwards, and treat the patient like they were stroke patients-wrong type of treatment.
you might want to talk to the insurance company to see if they can assign a caseworker to nate and get him extended therapy with someone who is experienced with gbs patient therapies.
give nate a big hug for me, and i hope he comes online and joins us to ask questions, get info, to talk with us-those who understand what he is going through, and to vent. i hope nate will do armchair exercises to keep his muscles from atrophying to the point of no return, arm curls with cans of food, when strong enough of course, and leg lifts and so on, he needs to keep his muscles moving. again i think you are doing a great job in supporting him and being positive and just being there when he needs to talk to someone. keep up the great work, trudy. take care.
AnonymousNovember 2, 2006 at 2:39 pm
I was very apprehensive when they PT guy said he thought Nate was ready to try them. I was right.
His legs are not anywhere near ready for them. His leg muscles are not even visible yet. They are still stick legs.
He has no balance and no strength in his legs.
We see our doc tomorrow and I will be talking to him about what happened. Hopefully he can find us some other PT company that has a better grasp of what he needs.
I tried to get Nate to spend some time here but when he read the posts that talk about how long it takes some people, he was discouraged.
I’m going to show him your post though. It might just help him want to come back and take another look.
AnonymousNovember 4, 2006 at 9:29 am
I think it maybe useful to send this out to Nate from a fellow young person at least I still see myself as young. I was paralyzed in the hospital last year with GBS and now I have recovered pretty nicely but the struggles he is having today I remember very well and I also felt discouraged when I read the posts on this board. Now, I find them uplifling and supportive because the struggles I have now are sometimes like wining compared to what it was really like a year ago. These boards are good for mom and later term problems that may or may not manifest but right now all you need to know is that one finger or leg lift or hand lift at a time is your focus. I would like to hear from you in a year, perhaps we could compare forty meter times. Of course I will still be getting stronger. Time does heal but life is 98% attitude and 2% work. Obviously the work is relative to your attitude. The fact that you have survived makes you more powerful than those who are superior athletes in this world, plus you have the blessing of knowing what others can only imagine. You should know what it means to walk, talk, feel and move and because you will do those things again it should uplift you because there are many who never have the chance you do. You will get better but you will also learn how to be patient with yourself, I am learning to do just that even though I don’t like it. I’m cheering you on Nate, I look forward to your story being told as you get better. Praying for you Nate from Maryland.
AnonymousNovember 4, 2006 at 1:50 pm
He was eager at the hospital, but home drained that eagerness away. What usually gets drained when coming home, is the enviroment he was having success in, has now changed and has to be learned again. Seems like more failures, but they are not. The saftey net at the hospital was quite larger then now, and therapy now lies more on his shoulders to obtain goals and succeed in, which can add to presure put on himself. By himself.
Any insurance policy will tell a person just how much therapy is allowed in a given insurance cycle. This is the dollar coverage, here’s what therapy charges, divide that into the big amount, and your number of visits allowed by insurance, appears right in front of you. Use them up all right away then wait for reload, or space them apart like I did, and keep continuous coverages going all year.
The hospital directs all care and therapy, and only a doc’s signature can move insurance in another direction. Doctors also know sometimes weeks in advance, the road a patient is going to take. So, always start there before blaming insurance.
Therapy, to me, is where the hangup is. Find out from them if they are using words like ‘maintainence’ or ‘no progress’ in their reporting. Those words will stop therapy. After home therapy, out-patient therapy should be next. Just be careful who or what you are blaming, because everybody involved will blame the other to defuse a situation first. That would explain why a therapist said try a 24hour fitness place, because they alone, are the ones taking needed therapy away from Nate by reporting to insurance right after a doc signs off on their report.
Nate can walk, right? You said he walked around in the bathroom after you stated he can’t walk elsewhere because of no leg muscles? Sometimes, enableing a person will stop progress. Staying in a given comfort zone will indeed harm his recovery. Raise his seat height up in his wheelchair, then raise a piece of furnature up to match in the TV room, and have him start to sit to stand, then takes steps over and sit in the regular chair on a riser, and back and forth. Then tell the therapist it is an improvement. He’ll learn that all on his own, and be able to have phisical improvements to boot. Keep in his working zone too. The kitchen incident was using the cabinets to block his knees, and you behind him with the chair to catch him if he collapses. Tell me, how far down did he squat before he collapsed? One inch before collapse, and all the way up to a stand at attention pose, is now a known working range. Stay in those ranges for awhile and work down to harder, is what you want done. Squats are very importent. Gets the big muscles going first which is what you want. Sit to stand and back though. The squats Angel was describing are not, and therapists tend to do this, starting from a natural or normal seating height. A defeating position as I call it. If Nate can unbuckle his knees, then hold that position, then lower 6 inches and back up, is very much indeed progress and where work should always start. Called a squat move but not defined like therapists think it should be.
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