My aunt was recently diagnosed with Susac’s and my family and I do not understand this illness. It seems she just keeps getting worse. She has been in the hospital for a good part of 2 months and just last week she was finally diagnosed officially. She does not even know who her husband or mom is and this is devastating to my family. Please educate me so we can understand and please give me hope! Will we ever get HER back?
InNeedofPrayer…
I have been dianosed with “partial susacs” you can find a lot of details on line regarding the syndrome.
In fact over the past 2 months, I have been struggling to save my hearing. 2 years ago I lost my left ear… and now am fighting for my right.
A lot of money spent… good thing I have insurance for the majority of it.
Did they start her on any iv therapy treatments yet?
I will be praying, and will also covet your prayers in my situation.
thanks… kris
I need to here more information about here I have had Susac since 2001
and they did not tell me what I had until Feb. 2002 and was really bad
forgot a lot of things and did not know what I was doing I took high
doses of IVIG and chemo and has had a lot of Physical Therapy and they
can’t explain a lot of things to me.
So wright now there is a lot of other things going on like plasma
exchange I just heard about. If she is really bad it might be
something for you to ask your doctor I did he said that I’m not that
bad that it might kill me.
Well stay positive and keep your head up.
Linda Faye Hamilton
Northern Kentucky
Thanks for the responses! She is not any better than the day I first posted.
My question now is… have you ever heard of someone with Susac’s having espisodes of psychcosis??? This is such a confusing time for everyone because it seems like there is no change EVER!
Hi. I’m so sorry about your Aunt. I too, have Susac’s. Many Susacers have or had “encephalapathy” which is swelling of the brain & causes a type of dementia. It usually is somewhat reversible, though not always. An MRI is recommended. Other symptoms are hearing and vision loss, which are also very often reversible to a degree as well. Check out Dr. Susac’s website: www.neurohaven.com, it explains in more detail. Treatments include: IVIG therapy (blood plasma), and for severe situations, some chemo drugs like cytoxan.Other Susacers have been in comas and suffer spastic gait and severe migraine (like myself). On the bright side- some people I know have returned to work, and have regained some sense of normalcy in their lives.
Nancy
I had another episode… were my hearing in my right ear went down again… so went back up to Mayo… and have been on a very aggresive IVIG therepy for a few weeks. I’m down to 1 a week… this week being my last… thank God. It is stabalized. Not were it should be, but stabalized.
I am also on Topamax… been on for about a month. Seems to be helping a bit… does a number on your body, but seams to help with migrains.
I’m having quite the time with the insurance company, so I hope this is the last bought with the IVIG, if not, I don’t know what I will do. Gonna have to tell the doc, were gonna have to do this some other way, unless he’s gonna pay the bills… that stuff is wayyyy too expensive.
Kris
Chris:
your insurance doesn’t pay for your IVIG treatments? Mine is 100% paid for, and a nurse comes to my home to give me mine. I have Blue Cross HMO.
Nancy
I have BlueCross and they won’t pay for IVIG treatment. They said it was too experimental. My wife said she would file an appeal or something and they told her it would do no good. My doctor’s said that if anything happened they would admit me and have it administered. But I’ve been okay without it for about a year.
Daniel:
It’s not experimental. Whoever told you that doesn’t have a clue! It’s used for many treatments-HIV, Susacs, and many other autoimmune diseases. And, according to Dr. Susacs and other medical professionals, it is one of the ways (including prednisone), to treat Susacs. Where do you live? And how did you pay for your past treatments?
Nancy
well… I am still fighting with insurance… I am finally done with the treatment as of last thursday… but my bill at the one hospital is totalling around 160,000 dollars. OUCH.
Doctor is still going to try to appeal. I work for a good company, I know they will fight for me, but I don’t know. I make around 25 g a year… VERY LITTLE… so its not like I can pay for this in a lifetime.
Not without saying, I will never have to have treatment again?? hhmmm
Life goes on… Kris
Dear All:
I had no idea that so many Susacers are having problems getting their insurance to pay for IVIG treatments, that’s horrible! I just spoke with Dr. Susac’s nurse, DJ, and he told me through her that since my arms are so scarred from 7 yrs of IVIG treatments that I can start taking Cellcept orally. Anybody else take it? I looked it up on the Internet and it’s an immunosuppressant drug given to MS, Lupus and organ transplant patients. It lowers your resistance to infection, and you run a risk of skin cancer and have to be monitored constantly by a Dr.
Just when I thought that I was weaning off of meds! Oh well.
Nancy
Nancy,
I live in Chattanooga, TN. My insurance paid for the treatments in the hospital but would not pay for any additional ones.
As to your question about Cellcept. One thing that I do have a lot of experience with. I have taken it for a year. It’s one of the better meds that I’ve taken. I was really worried about getting everything with a lowered immune system. I haven’t gotten sick once, even through Flu season. And I have a 3 year old that brings everything home. I am pretty cautious, but I think it’s because your immune system is on overdrive anyway and it doesn’t matter. Perhaps just brings it down to normal levels? I’m not doctor, just speculating. You do have to be careful in the sun. I went out one time shirtless on the beach and had some light brown spots come up. Use sunscreen and you’ll be fine. In everyday, normal activity it’s fine to be in the sun. I take 2,000 mg a day. 2 pills in the morning and 2 at night. I was at 1500 mg but they bumped me up another pill and started tappering me off of Prednisone (thank God!). Cellcept doesn’t have a bad taste and is coated and easy to swallow. It seemed when they bumped it up to 2,000 mg I started to sweat more, mainly my feet. That sounds gross but, I’m just trying to lay it all out there for you. It was a great tradeoff for me. I wouldn’t fear this medication. It’s the best one I’ve taken. And it’s allowed me to go down on the prednisone which in turn has allowed me to shed 14 lbs that I had gained because of the prednisone. I hate that stuff. Cellcept costs me about $50 or $60 for a month’s supply.
Dear Daniel:
thank you for your reply! I have a serious decision to make-should I continue with my IVIG therapy or take Cellcept? I just got off of the phone with my opthamologist who is the one who figured out that I had Susacs in 2000. He is encouraging me to take Cellcept. He told me that one of his patients who has a similiar case as mine discontinued her IVIG therapies due to insurance not paying for them and then she lost a lot of her eyesight. I’m trying to avoid that!
Regards,
Nancy
Nancy,
You do have a serious decision to make. Only you can make it. Do whatever you feel comfortable with. I have eyesight loss from Susac’s. And taking Cellcept I have had no more vision loss or any other kinds of episodes. I take a combination of that and Prednisone. In my personal opinion, YES!, take Cellcept. I wouldn’t fear it at all. I had a lot of fear before I started taking it. I had no idea what it would do. I can say with complete confidence that there is nothing to fear from this medication. The side effects are almost non-existant. I’ve heard of other medications affecting your taste etc… This does nothing like that. Just wear sunblock if you go to the beach, which you should do anyway and you’ll be fine. Personally I’m more scared of IVIG than Cellcept.
Daniel
Daniel:
I just made an appt with a new rheumatologist (for Oct 19), who is affiliated with NYU Medical Hospital and was recommended by my opthamologist. I have decided to switch to Cellcept, mainly because I am running out of good veins for IVIG and I don’t want to start using veins in my legs or neck(yuck!) Did you get an upset stomach from Cellcept? I was told to start on 1 gram a day, twice daily. I’ll let you know how it goes!
Nancy
Nancy,
I take one Zantac 150 a day and it takes care of any upset stomach. I think I have that more from the prednisone. But I’m not sure. But it’s not that bad. I hope it goes well for you. You mentioned something earlier about having to be monitored constantly by a Dr. I used to have trips to the MS clinic in Vanderbilt every 2 or 3 months. But he said I didn’t have to see him again until January. So you don’t really have to be constantly monitored. But I would have regular checkups at the beginning to make sure everything is going well. They took blood several times to make sure both medications weren’t affecting my kidneys, liver etc… I was fine every time. Just trust you gut and monitor how you feel and how it works for you. I’ve had no problems with it at all. I hope it works as well for you. If you have any questions don’t hesitate to ask.
Good luck!
Daniel
I am preparing something for my insurance company now for my IVIG treatment. I was in contact with Dr. Susac himself, he sent me a couple articles to send them. So I hope it makes a bit of a difference.
I will keep ya’ll posted. I am making copies of everything I have, so that I have it on file… I have a feeling if this works… I will need to share this on my blog.
Kris