IVIg users - how long does releif last???
 

Hello everyone,

I know everyone may have individual results / releif but was just wondering those of you receiving IVIg how long do you get releif from your usual MG symptoms and how frequently are you receiving IVIg?


Me currently had my first treatment 3 weeks ago and I noticed releif after 2-3 days, but now just under 3 weeks I feel as though my MG symptoms are slowly creeping back, my next treatment is next thursday, and certainly look forward to it.

If IVIg is so good, why is it not so common of a treatment and does anyone know are their any long term side effects to receiving IVIg???


Cheers,

Melissa

IVIG effects usually start after a couple of days and last about 4 weeks when they are effective… (they haven't been for me, I had two series without any effect…).
That treatment is rather expensive as they are prepared from human blood, they have also to be repeated every 5 to 6 weeks to have a permanent effect, that's why, besides their possible medical side effects, they are not favoured by some doctors. Some countries prefer plasmapheresis (about the same cost)
reported to be more effective, (again, they haven't been for me…), the anti-bodies are temporarily removed instead of being counteracted.
Maurice.

IVIG after being started, workes best getting it over & over, as long as you need it, to renew your cells. I one time treatment just fades away :(

Hi mm80!
 

I am now on a "management" program to keep my MG @ bay - 1 week a month for several months now.

The FIRST time I had it, I felt it IMMEDIATELY! I am not joking about that! :DNow when I receive it, it tkes a few days to fully feel the effects - effects that last about 3-4 weeks.

I was told by one of the nurses that IV IG is still considered "experimental" therefore lots of neuro's do not use it. I swear by it though!

I was also told that it can be had on the kidneys - so when you have it done, make sure to drink lots and lots of water!

I get 500 mL for 5 days in a row.......much better than the mega doses that other people get!

Take care and hope this helps!
Erin:D

Ivig
 

I'v been on IVig for over 9 months. Once a month and the Dr. took me off of it this month Didn't do anything for me. But I guess everyone is different. Good luck. :) Bev

Erin,
 

How on earth do you get your insurance company to cover so much IVIG?:confused:
I usually need it 3 times a year and getting our insurance company to cover it is extremely difficult!:eek:

Jenna

Hi stayathomemom!
 

Erin,
We have Cigna...need I say more? :o

Hey stayathomemom!
 

I don't know enough to know what type cigna is............sorry. Are they really bad?

Erin

I am one of the lucky ones that has a severe reaction to it, I have to have IV pred. before I take my treatments. Without the extra ped. I start a fever immediately goes up to 106 & am covered in hives, big ones all over ! High dose pred. keeps it at a do able level, I get a great boost though from it, & it starts to fade 6 weeks.

I get 1 infusion of IVIg every three weeks - lasts about two and a half weeks for me so I have a few days either side of the infusion that I don't feel very strong

Maybe it is just psychological.(for me, I mean???)...but I felt better this morning...after my very first IVIG infusion treatment...Is this normal?? I am completing my 2nd one now....However..I have also been on bed rest too.

I had no side effects except for my blood pressure dropping in the beginning and then increasing in the end....weird huh? no fever, no headache, or chills. :winky:

Hey Cricket!
 

Cellcept vs. Imuran
 

My doctor has just started on me on 500 mg. Cellcept/three times a day. My cost (with insurance) is $800./mo. Can anyone tell me what you know about the research and benefits of cellcept vs. Imuran?

Once more, who can explain these costs…? In France, the full cost of a monthly Cellcept consumption at 3/day is 600 US$…
Cellcept is reported to have less side effects than Imuran but its effectiveness is questioned by some…
I 've been taking Cellcept for 21 months now and I'm rather pleased with the results but since I'm also taking Pred, I don't know which medication is really doing the job…!
Maurice.

Hi leaningin.......
 

I am having a mind blowing headache after receiving my IVIG this past weekend. :eek:

Call your doc.
 

If this is unusual for you to have that kind of headache, I think you should call your Neuro ASAP, to report it.

You had mentioned the BP fluctuation, and I'm probably just hypersensitive to such thing right now, because I had an unruptured brain aneurysm coiled in Jan this year. One of the symptoms of a rupture annie is "the worst headache you can imagine".

If mind blowing falls in that category, please get that checked out. You may even want to head straight to the ER if it is "the worst...."! Please let us know how you're doing.

I started out on imuran, but my neuro changed me to cellcept to see if I would do better on it. Thankfully I seem to have less really bad ups and downs, and I'm back down to 15mg of pred with no flare ups.

Thankfully here in Australia it costs me $5.50 for a prescription(1 months supply) due to our Prescription Benefits Scheme, thats all any(or most, some medications arn't on the scheme) costs, and when I reach my limit, I don't pay for anything, this usually happens around October, so I have 2-3 months where I get all my medication for free. I really to love our Hospital and prescription arrangements over here.
Kate

Hi Cricket,
Do you know that you should drink plenty of water (at least 1.5 liter per day) during IVIG to avoid headaches?
Another factor is the infusion speed, they should start slowly (about 3 to 4 hours per bottle) then inscrease the speed if everything goes well.
Maurice.

Hey Kate!
 

I tell you, I am moving to Australia! That sounds awesome! I picked up a few scrpis today for $145!!!!!!! $145!!!Why on earth do they cost so much here?

Hope you are feeling better!

ERin:D

Hi Cricket!
 

Has your headache gone away yet? If not, I'd call your dr or get to the ER. You may be having a reaction to the IV IG. Did you drink lots of water before it? Were you given benadryl or tylenol?

Hope you are already feeling better!

Big hugs!
Erin:D

Hi Erin,

Its all run(hospital cover and prescriptions) by tax we pay, everyone pays a tax to cover health. If you want extra cover, to go to a private hospital you can take out private insurance, or you can wait and go to a public hospital. Yes Iam very thankful to live in Australia, and know how lucky Iam to have free medical and low prescription costs. It doesn't however cover dental, it seems that teeth arn't part of the human body:eek: You still have to fork out huge amounts of money to go to a dentist, or wait months/years to go to the dental hospital, which only costs a minimal amount.
Kate

It has finally subsided slightly with medication. My doc said it is aseptic menigitis from the IVIG. The headaches are sooo horrible...my head...my neck...and my back...all involved in the headache. I get confused during the onset of these headaches..He gave me some hydrocodone with ibroprofen 7.5 tabs for the pain...it helps ease the aching head...but the neck aches and is sooo stiff!
Has this ever happen to any of you??:confused:

I am still feeling rough. I am basically off work on bedrest.."house arrest"...until the 18th. They premedicated me with tylenol and benadryl...as well as received solu-medrol IV prior to IVIG. Doc told me that I needed to relax because stress makes MG worse...as well as makes the side effects worse....:o

I had a few soda's prior to the infusion...but next time...I am drinking tons and tons of water before, in between....and after!!

Also, infusion went in over 3 hours....2g/KG...I will also ask them to slow it down....

But the problems didn't start until the next day...after I got home...Doctor told me to stop taking the imuran too...

Hi Kate and Erin (and others),

Australia sounds a bit like the UK. I pay a one time fee of £38 and get all my prescriptions for a year. The difference is made up by taxes etc. The Scottish government is planning to remove all prescription charges by 2011. I don't mind paying a bit for my prescriptions because i am able to (thankfully my husband and I are both working full-time). But I know we wouldn't be able to maintain our standard of living if i had to pay for everything! The worst was when i went in for my IVIG - everyone kept talking about how expensive it was and then it didn't even work for me! I felt like I had wasted so much money (and resources).

The only downside to the NHS is that SOMETIMES the decisions are based on money. For example, when i moved here I was taking contraceptive pills that worked really well to control my cramps etc. When I went to get a refill the doctor told me that brand was too pricey and they wouldn't prescribe it so she switched me to another brand. Oh, and this is a funny money saving story - I take 40 mg of omeprazole daily to help with the side-effects of azathioprine. One day I woke up to a letter from the NHS saying they were changing my prescription for 1 - 40mg capsule to 2 - 20mg capsules. Apparently the 20mg capsules are cheaper. Minor inconvience for me, now I just take 2 in the morning instead of 1.

There are NHS dentists here, but they are pretty much impossible to get into so my husband pays for a private one. I can't even get into that practice (it's full) so I still go to my original dentist in Canada when i go home in the summer and pay for my treatments there. Thankfully I've not needed any emergency teeth work done. Our local area is talking about getting another dentist due to demand but is finding it hard to recruit someone to the area.

Hi Cricket!
 

Hey hon! Are you feeling better? How is your head? I am so sorry you are having such a rough time - just ain't right........:(

Why did your dr take you off the Imuran?

MG just sux! It takes away all normalcy in our lives - there is no in between. Either we feel great or awful - no in between......hate that......sigh......

Have you asked about the plasma exchange? It isn't fun @ all, but neither are mind blowing headaches or "house arrest"...........

Hopefully they will slow it down - the rate of the IV IG - I loved having mine going as fast as possible, but my neuro made them reduce it from 360 mL and hr to 150 (max) in order to prevent kidey damage.......

You just take it ez and take good care of yourself - you are lucky to have such a great hubby!:hug:

Big, big hugs!
Erin:D

Today is a good day! Mind blowing headache has been reduced to a mild ache in my neck...no pain medication needed (except for 2 aleeve)...however, I have been so lazy and stayed in bed--seriously--laid up in bed sleeping all day! I am hoping for more energy tomorrow!!:thud:

The doc thought that the imuran was just too much for my system to handle--since I reacted so violently to the IVIG....however...I honestly believe the IVIG has helped me--double vision is gone, eye droop is gone, blurry vision is gone...and today..the headache is much, much better!

Keeping my fingers crossed that I am turning the corner..on this headache...

Steph

Hi Steph!