Newly Diagnosed

[Cherie 75]

I am a 35 year old female and have just been diagnosed with mmn with cb. I had my first ivig teatment 2 weeks ago and am still feeling light headed and getting headaches. I was hoping I could find out how everyone else feels as they go along in their treatment

 

[Al]

Hi Cherie. We do have a few taking the treatment. If you use the search feature above you may find info there. Hopefully others will see your post and respond. By the way, welcome but sorry you had to come looking for us.

AL.

 

[Timmi]

Hi Cherie,
I have the same diagnosis as you, also living in Western Australia (Freo). I have been having IvIg at the Ivy Suite in SJOG hospital in Subiaco for the past year and my response to the treatment has been good. Fortunately I do not get any side effects as you describe. I do however drink quite a lot of water during the infusion, I dont know whether this helps to alleviate some of the side effects.
The treatment is very effective in my case (I have weakness in the right hand) and I am almost back to normal 2 or 3 days after treatment. I have two treatments of 78mg at 4 week intervals. Weakness returns after about 3 weeks.
From reading the threads on the forum you will see that reaction and side effects vary from case to case.
I hope you have an effective response, good luck,
Tim

 

[laurel]

Hi Cherie,
My husband has CIDP-MADSAM with conduction block, and he gets 100 G. of IVIG every three weeks since 2007. He had terrible headaches in the beginning. The key to not getting them is to really drink lots of water starting 2-3 days before treatment, and to keep drinking lots of water during the treatment as well. Also, many people on IVIG pre-medicate by taking a Naprosyn or two prior to treatment and during if needed. Some people get a rash and will pre-medicate with Bendryl as well. He no longer gets the headaches and the malaise since he began drinking water as I described. He has responded well to the IVIG, but needs to continue to prevent symptoms such as lose of hand strength and gait impairment worsening. Good luck with your treatments.
Laurel

 

[Peg B]

HI Cherie,

Again Welcome, but sorry you are here. I have MMN. I started in Jan 2007 having IVIG treatments every two weeks. We tried every four weeks but my symptoms got worse. I am now getting them every 3 weeks. After the first treatment I was sick for a week with headaches and flu like symptoms. Again drinking water helps alot but I also get compozine (prescription) for head ache and nausea, 2 Tylenol, 2 benadryl, and liquid (IV) prednizone prior to treatments. That takes complete care of side effects for me. Best Wishes to you, Peg

 

[rulimping]

Hi Cherie,

I hope you are travelling OK with your treatment and condition.

I had EMG last week and was advised likely MMN; expecting formal confirmation this week. What a roller coaster...

I am in Melbourne and interested in whether you are a public or private patient and of the out of pocket costs. I'm also interested in ability to work during treatment.

Regards

 

[Cherie 75]

Hi Rulimping
My treatment seems to be going fairly well at the moment but I am waiting to see my specialist. I am having 66gm Intragam a day for 2 days per month. I am a public patient so apart from travel to and from the hospital (160km each way) I have no out of pocket expenses which is great as I've heard in some countries the cost is huge. I have found that drinking heaps of water leading u, during and after my treatment helps stop the headaches and I usually take Nurophen in the morning before I go in. After I come back I normally need a day to just rest and feel normal again but then it is straight back into work. I am lucky enough to run my own cafe so getting time off for treatment is easy.
I hope this helps as I feel like I am still new to all this. I hope all goes well. Take care

 

[rulimping]

Thank you, Cherie, that's really helpful.

I am heartened to hear of people working & living relatively normal lives.

I expect that we will need to always closely monitor treatment. However I hope that if I respond well to treatment and we can stabilise me that we can investigate subcutaneous self administering of IVIG - I seem to remember reading that this is a new option - will ask my neuro.

Early days yet though ...