Terrible relapse

I’m sorry that you are going through this. In the beginning it’s hard. You have to figure out what meds to take & what schedule you should be on. I hope you feel better soon. Get some rest & just take it day by day & it will get easier.

How often were you getting IVIG that made the dr’s so nervous?

Good luck,
Kelly

Lourdes,
So sorry to hear you have relapsed. Kevin had 2 major relapses back to hell. Now with monthly loading doses he is doing what normal kids do. He still has pain and difficulties but we are trying to manage. There is hope!
Dawn Kevies mom

I am sorry to hear that you were in the hospital. I haven’t progressed to that state yet and I hope I don’t. I will say my symptoms have been getting progressively worse including my typing – thank God for spell check. Going up and down the stairs is such a chore. Fortunately I am able to work from home but once I come down to my “home office” I pretty much stay here unless I have to trudge up to the bathroom.
I tried the ivIG and it didn’t work for me as didn’t the prednisone and am weaning off of that now. I am waiting to hear back from the neurologists office to schedule me for P/WE… I am hoping that may do the trick for me. This is a terribly frustrating disease – especially for someone who was quite active and now is reduced to almost being an invalid. I use a cane for walking and am having a more difficult time standing up from a sitting position.

So, hang in there, Try to stay cheerful – I know I get very frustrated but I can only hope it will get better.

,.[QUOTE=canarias]Hello:

I’m backing home from hospital, and at that very moment I don’t feel very cheerfully.:(

I’ve spent there about 10 days, meanwhile the doctors decided what treatment give me.

They don’t want to give the IGV so frequently, so they did all the test again, and finally decided to give another IGV doses, Prednisona (50 mg) and Imurel (50 mg).

Now wait, and start from the beginning because I almost can’t write and I need some help to walk an to do usual things, feeling very tired and sleeping hours and hours.

I know I can’t complaint very much because many of you would like to be as I am now, but I fell as I had come back to hell.

I just wanted to vent to someone who really understand me and can fell how I fell now.

Thank you for being there and sorry for my complaints:o

Lourdes[/QUOTE]

Hi Lourdes,

It is very frustrating and I am still experimenting with what works and doesn’t work. Right now I am getting a good week and a bad week with IVIG every other week. I am fearful of being dependent on IVIG too, but when I feel so much better, I can’t worry about that. Hopefully you will continue to keep up your spirit! Gabrielle

Hi there

I have been having IVIg for five years – we have changed the frequency often, from 6 weekly to 12 weekly (when the doctor was very concerned with $$$), but now I get it monthly and it seems to be working. When I say “working” – it keeps the symptoms dampened down so that I can function sort of normally.

I have tried prednisone but it didn’t work for me. I have been on Imuran for twelve months but I haven’t seen much change – but it seems to take quite alot of time to work from what I have heard.

But, you must keep trying, and don’t let your doctors stop because of money – if something like IVIg works for you then don’t stop! Don’t worry about being dependent. Well, I feel like that 2 days a month is not too great a price to pay for feeling fairly human again. I guess that you have to decide what the price is for yourself.

take care

Hi Lourdes!

Sorry you’re struggling. Just know that I’ve been there, many of us have. I’m sending my best wishes and hopes for a better tomorrow.

Many blessings,
Kristen
[url]www.cidpandme.blogspot.com[/url]

life can seem crap at times eh,
maybe you can look at it as your wee rest phase before you come back at full steam ahead!!!!!!!!!!! Can empathise with you, am not thrilled in saying have been there done that (have experienced life as quadraplegic) but if you hang in there and listen to your body and speak up to docs heres hoping you will find the strenght to get back to what you were capable off. Enjoy catching up on the reading etc while the doc sort you out. I am currently on weekly ivig (umtil recently been on twice weeklyl ivig) plus pulse methyl pred and azathiaprine, and to be honest it is nothing to have treatment so regulary as i now have my life back!!!!! Just went for a 2 km run today with my children, as the pain started to kick in i didnt even care as was so wrapt i cud do it. hang in there, you get it all back
kia kaha – stay strong ( and get someone to go get you that good book you were thinking about reading!!!!!!!!!!!)

Dear Canarias,
Glad to hear from you. So so sorry for your struggle. Just keep talking because we are listening and you don’t have to apologize. Thats what we are here for. Glad today was a wee better. So much of this is our mind. If we can stay somehow out of the mental muck, it is easier to handle the physical.
Be well.
Linda

Hello Lourdes,
I am just wondering if you don’t have the insurance coverage and your doctor denied you the IVIG’s because of the cost, it is very expensive. I was on IVIG’s every other week, so to me, if it’s helping you, every three weeks isn’t to much. Sometimes the IVIG’s just control the progression and you don’t always feel stronger and better, so what you and the doctor are looking for is feeling the same and never feeling worse. When you don’t feel worse, the IVIG’s are working.

We are here whenever you need someone to talk to, we listen to anger, sadness and happy news because we feel what you feel.

I am new to The web site…. but I just wanted to give you some hope…. In 2001 I was diag. with GBS… Had a relapse and then another and then another…. They then diag. me with CIDP… I received IVIG treatment for 3 years…. I AM FREE OF ALMOST ALL SYMTOMS OF CIDP… Haven’t had a treatment in almost 4 years and can do all that I could do before CIDP – Hang in there and remember….. “This too shall pass” – May God bless you and give hope and courage and most of all His Precious Presence!

Hi there,

Relapsing is most definitely a spirit crusher and a painful reminder of life with a chronic illness. I was dx in the fall of 2003 and steadily deteriorated over a 10 month period untill I bottomed out as a full quadrapalegeic on a ventilator. Through those 10 months I tried IVIG, PP, and steroids. I used all types of brands, combinations, and doseing schedules but nothing would stop the progression of my CIDP. I was on a ventilator for 1 1/2 months in the ICU and my prognosis was death if they were not able to gain control of the disease. 13 months after being dx they finally were able to control my CIDP with Cytoxan (chemo). I recieved Cytoxan treatments for 5 months and was on my way to the road of recovery. I had been paralyzed for so long that I had to relearn how to do everything from feeding myself too walking. At 21 years old recovery came quick. Six months after I checked out of the rehab hospital I was already beginning to walk short distances without assistance.

Eight months after checking out of rehab and being off of the chemo I started to relapse. I had been doing so well that I went into denial and refused to believe that I was relapsing already. In my mind I was getting better and I talked myself into beliveing that what I was feeling were the residuals that you hear about. I didn’t tell my doctor until I was already losing my balance and falling over, by then I knew 100% that I was relapsing. It broke my heart into a million pieces. My loved ones and I had been through so much in such a short time that it felt like the most unfair thing that could possibly happen in the world. I had worked so hard to get too where I was and I was as tired as one could be of fighting and hanging in there. I quickly deteriorated back down to a quadrapalegic and remained in that condition for 2 months.

After another round of chemo , steroids and IVIG I once again started my road to recovery. I have been in recovery from my last relapse for 20 months now, and I am doing better then anyone ever could of expected. I recieved IVIG weekly for a year, and now recieve it biweekly along with immunosupressants. I walk 12 miles a week recreational and just started to jog 1/2 mile a week. They told me I would never walk again, let alone run! I’m sure glad I did not listen to them.

I just wanted to share a glimpse of my experience with you and to encourage you too continue fighting.

Take care,
Emily

Emily – great news that you recovered the way you did. Jeez, I will be happy to be able to walk without the darn cane, and really elated if I could jog again. It looks like there is hope for all of us.
Thanks so much for sharing!!

Take it one day at a time. You’re gonna get better!

Think positive.