IVIG-Anything good?

Hi, Cheryl.

I’m one! For four years it stopped my relapses and enabled me to be almost normal. The problem I have now is that, since my CIDP has changed courses, IVIg doesn’t work as well as it once did. But that’s another story.

Best wishes in the battle.

Deb

Hi Cheryl

I had round one of IVIG a week ago. I know that I was quite anxious before and during the treatments, and hugely relieved when the IV came out on the fourth day! Just want to say that the experience was fine for me. I have already regained some (quite) limited movement in my right foot, and energy that I didn’t know was missing. On the down side, there hasn’t been any miraculous improvements for me — just minor ones. And I am still struggling with headaches for some reason, but I am optimistic that things are getting better.

Good luck
Helen

Cheryl,

I have been on IVIG off and on since 1988, it really has done wonders for me. There are possible side effects, but there are for every medication. Try and be well hydrated before the infusion, and also premed with Tylenol and Benadryl. Good luck with the infusion and let us know how it goes.

Jerimy

Cheryl

I receive IVIG infusions (Gamunex) every three weeks. They are good for me. Was able to get up and dance with my grandaughters at my grandson’s wedding a few weeks ago. The only thing that is holding me back is my arthritis in the hips and knees. I am still taking Prednisone (15mg) a day. Trying to get off again.

Ron

Hello Cheryl,
I should be able to say something good about IVIG’s. I received them for four years. I am doing well now, no longer progressing. I was given gammagard. Some of us have problems with IVIG, some of us don’t. IVIG’s can and will bring about improvements and and increase in strength, I have read members saying they feel better. BUT, IVIG’s have another VITAL purpose, they can JUST control the progression, you won’t feel too much different and when you are no longer progressing, the body can heal.

hi there,
my mom is currently in the hospital dealing with gb and is having the ivig treatment. i am wondering if this is something that she will have to continue doing once she is out of the hospital? it seems that some of you all have been going for years to get these treatments. this isn’t something that will just go away with these treatments? this kinda just gets the progression under control but she still has to deal with it for awhile?
thanks for your help.

Last year, after 6 months of treatment with IVIG (75g every 4 – 5 weeks), I was nearly symptom-free except for some fatigue. The side effects were negligible.

I was given my IVIG infusion in a medical daycare facility, and there were usually a half dozen other people receiving it at the same time. Although you can have different reactions to different batches, pre-medication was not common, and aside from feeling a bit tired after, most of us had no reactions worth talking about.

Going on discussion boards and mailing lists is a good way to find out about what the worst case is — there are a lot of people anxious to tell you just how bad things can be.

Hi Cheryl,

I have been getting IVIG since January of this year every two weeks. It has done wonders for me. In January I was still in a power chair since being diagnosed in September 2005 with GBS and that was changed to CIDP in November. I had numerous hospitalizations from Sept to Dec 2005. In January my doctor started IVIG at home with a visiting nurse at two week intervals. I am now able to walk! I do still have fatigue if I over do it and the use of my calf muscles is extremely limited. I can’t climb stairs and can’t walk on uneven ground. But, if I see my feet on flat ground, I can walk. Numbness, pain and strange sensations is another story.

I am given pre meds of Solumedrol, Tylenol and Kytril and have never…… had any reaction to the IVIG. I know that everyone is different but this seems to work great for me. My infusion takes approximately 3 hours and usually afterwards I am able to go out to dinner with my hubby.

My thoughts and prayers are with you for next week. Keep a positive outlook, it makes things a lot easier.

Blessings,
Barbara

I ave just finished my 4th round of IVIG since July a year ago….I have had no side effects but good results from my experiences. Listen to Jerimy and drink lots of water a couple of days ahead of time and don’t be shy to ask for Tylenol for any headaches that might come during the infusion.

Thats my 2 cents worth….
Stephen

[QUOTE=isabel]hi there,
my mom is currently in the hospital dealing with gb and is having the ivig treatment. i am wondering if this is something that she will have to continue doing once she is out of the hospital? it seems that some of you all have been going for years to get these treatments. this isn’t something that will just go away with these treatments? this kinda just gets the progression under control but she still has to deal with it for awhile?
thanks for your help.[/QUOTE]

Hi, Isabel.

If your mother has GBS (which is generally the term used for the acute form), she won’t need to have IVIg for very long. The GBS attack only lasts a few weeks (IVIg can usually shorten that), and then the nerve sheaths start to heal. Although she may be left with residual problems (tingling, numbness), she won’t need additional treatment.

Most of the responses above are from people with CIDP, the chronic form of GBS. Rather than having the short-term attack, we tend continue to have periodic attacks (relapses) or a long progessive attack. Thus, we need to have long-term treatment, either with IVIg, steroids, or other things that help ‘adjust’ the immune system.

Hope this helps.

Deb

Cheryl:

I agree with the others who have posted about their positive experiences with IVIg. In the space of about three months, I went from walking with a limp and not being able to button my shirt to having full movement. There were side effects along the way, but we changed brands a couple of times. For the last 18 months, I’ve been using the liquid form of Gammagard with no problems.

IVIg has greatly improved my quality of life. I hope it will do the same for you.

Brian Sullivan
Burlington, VT

it’s helped me somewhat. as you can see from the posts here there are many different responses to ivig. i’ve been receiving ivig every two weeks for almost a year now. while most of my symptoms have remained the same, i can tell you that it has done a lot in helping to combat the fatigue that has been one of the strong elements of cidp. i’m on carimune right now.

benadryl, tylenol before and after the treatment seem to help many people. i believe that drinking lots of water before, during and after the treatment helps. i’m pre-medicated with a liquid steroid. i’ve had major allergic reactions which has resulted in a full body rash and the steroid helps to fight the rash. most people don’t have this problem, though.

good luck! i had plasmapheresis for almost three years prior to this past year of ivig and ivig is much preferable.

best,

brad

Once I began monthly infusions of IVIG, I gained back 75% of what I lost. For me, I didn’t want steriods so IVIG was the first thing I tried as far as treatments. Luckily, it works for me. I am going on almost 4 years of taking them and have had a few side-effects but nothing I couldn’t live through.
The worst is the flu-like symptoms I had followed by the headache. By introducing foreign anti-bodies (from the IVIG) I had a few days while my body seemed to be deciding if it had the flu or not, LOL! The headaches were bad until I discovered Excedrin Migraine and Exedrin quick-tabs(for when the migraine was already going strong).
I also pre-medicate with Tylenol, Benedryl, and solu-medrol before the infusion begins. Lots of water and no bending over seemed to help the headaches also.
I’ve noticed with my pregnancy and receiving the IVIG that I havent’ had the side-effect of the headache. My doc thinks the increase in blood volume plus my veins look about 3 times their normal size may be the reason it doesn’t hit me as hard.
I hope it works for you – though it is costly and time-consuming, it has far less serious side-effects than some of the other treatment options.

Hi Cheryl,

My 4 year old daughter has had nearly 30 IVIG infusions. Most of those infusions have been in the last 3 months. I can tell you that if I’m allowing my daughter to get so many infusions that there’s nothing to worry about. Afterall don’t mothers worry the most?

IVIG is a HUGE help for my daughter. She’s getting 2 IVIG’s a week (20 grams a piece) for maintenance. Right now she’s getting 3 treatments a week for the next 2 weeks because she’s in a relapse.

Yes, there are side effects but with careful monitoring the potential bad side effects can be halted. Your nurse should monitor your blood pressure, heart rate & temp often during the infusion. If there is going to be a bad reaction to it then it usually happens within the 1st hour. For that reason IVIG infusions start off slowly & then the rate increases over the time of the infusion.

If there is a change in your vital signs & the nurse believes that you are having a reaction she can either completely stop the infusion or she can slow it down & continue to monitor you.

There’s nothing to worry about, really. You should be aware of all of the potential side effects but you have to know that they are rare.

Good luck!
Kelly

Cheryl, I had minor flu-like symptoms afterwards. If you do, don’t worry about it, just take it easy.

Yes…yes…yes…Four years ago I could hardly walk, climb stairs, etc. You know the drill. I have had IVIG for three years and am now living an almost normal life. My doctor says my body is healing and I believe it is thanks to IVIG. I also think a positive attitude, mild exercise like yoga or water aerobics, and getting rid of stress can’t hurt. I hope the treatments work as well for you…Annie

Hi Cheryl:
Jerimy mentioned taking Tylenol and Benadryl prior to your IVIG infusion. PLEASE discuss with your doctor any medications you want to take BEFORE you take them. I cannot stress this enough. Even though these are over-the-counter drugs, they can still cause side effects in some people. You should NEVER take any drug on the say so of a person who does not know you from a medical perspective!

Barbara Katzman
Associate Director
GBS/CIDP Foundation International

I wanted to add that IF your doctor does indeed have you premedicate with Tylenol and Benedryl, considering taking your own.
My infusion center charges $20 for the Tylenol and another $40 for the 2 Benedryl. When I saw an itemized list of these items, I began bringing my own. I also informed my insurance company of what I was doing so they could see that I was trying to keep expenses down where I could. They sent me a letter thanking me and it was noted on my file. Like I said, it isn’t much compared to the thousands the IVIG costs, but $60/month times 12 months adds up:)

Hi Cheryl

I have been on the IVIG for three years, I started out with five days every month. Presently I’m getting it three days every month. Yes it did help, but I really didn’t see results for the first four months. I did get mega headaches at first but discovered that all I had to do to avoid the headache was reduce the rate (for me that means as soon as the headache starts I get the nurse to reduce the rate).

[QUOTE]The Benadryl made me tired for several hours after the treatment because I am very small.[/QUOTE]

LOL, that is what I love about the Benedryl!! My nurse hooks up one of the machines that takes vital signs so as not to disturb me and I get a great nap in!! Before I know it, my mom has arrived with the girls for lunch and my infusion is more than half over. I love it!

I have to echo what others have mentioned…it was several months of IVIG treatments before I realized that I was doing things I had not previously been able to do and feel things that before felt odd. I hope you continue the treatments with no problems and can look back here in a few months and see the improvement!:)

I’ve been very skeptical about the effectiveness of IVIG in my case. From all I’ve heard, it does not help much for antiMAG IgM neuropathy, a CIDP variant. Last year I received IVIG October through December because my neuro wanted to try anyhow. Although I knew about the ineffectiveness of IVIG for me, I still was disappointed and discouraged. I saw an oncologist earlier this year to rule out any cancerous blood conditions. It turned out negative. Then we tried Prednisone. This was a total disaster. I lost control over my legs and needed a rollator at all times to be able to move around at all. Of course, I stopped taking it.

In May we started IVIG again and just yesterday I finished the third month of infusions. This time I saw significant improvements. Around the house I don’t use any support anymore. The rollator I only use when I have to walk for longer distances, shopping center, a recent hike around a small lake in Rocky Mountain National Park. It’s been quite a blessing and has lifted my spirits considerably. And yesterday to my great surprise I noticed, almost by accident, that the tremor in my hands is almost completely gone. My fingers are still numb with some feeling left but I still have to use two fingers for typing.

I am anxious to see my neuro again Tuesday. I hope she will continue me on IVIG. A more effective treatment for my variant would be Rituxan but that is not approved for CIDP. This is another story altogether.

Cheryl, like Barbara said you should always discuss any meds with your Doctor. The recommendation to pre-med prior to IVIG infusions comes from the manufacturer as well as other groups.

Here is a link with the recommendation and also some other good information on IVIG and infusions from the Impaste)mune Deficiency Foundation:

primaryimmune.org/pubs/nurse_guide_igiv.pdf (cut and paste)

Jerimy

(message deleted…. off topic. sorry)