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-   -   IVIg users - how long does releif last??? (https://www.neurotalk.org/myasthenia-gravis/85697-ivig-users-releif.html)

erinhermes 05-08-2009 09:30 PM

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

Quote:

Originally Posted by redtail (Post 507491)
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


erinhermes 05-08-2009 09:32 PM

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

redtail 05-08-2009 10:01 PM

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

cricket001 05-09-2009 10:50 PM

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:




Quote:

Originally Posted by erinhermes (Post 507824)
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


cricket001 05-09-2009 10:53 PM

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


Quote:

Originally Posted by ras1256 (Post 507325)
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.


cricket001 05-09-2009 10:57 PM

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...


Quote:

Originally Posted by neutro (Post 507496)
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.


Scots Kat 05-10-2009 02:40 AM

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.

erinhermes 05-10-2009 03:50 PM

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













Quote:

Originally Posted by cricket001 (Post 508218)
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...


cricket001 05-10-2009 11:14 PM

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


Quote:

Originally Posted by erinhermes (Post 508390)
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





erinhermes 05-10-2009 11:23 PM

Hi Steph!
 
So glad to hear you are feeling better!

Enjoy your time on the sofa - you and your body DESERVE it! IV IG is really hard on the body......

:hug::hug:Erin:hug:



Quote:

Originally Posted by cricket001 (Post 508521)
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



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