Solaris and other best practices?
 

Hi,
I am so thrilled to finally start connecting with others. I was DX approx 2 years ago. I have probably had PNH for about 8 years given that I have had non-iron anemia and other symptoms for many years prior.

Anyways, I am in the larger risk for thrombosis (which I guess is larger clone size?).
I do not receive any transplants and am drug free thus far.

I am wondering if anyone that is currently on Solaris can comment -- how has it been? It seems like a major commitment and would like to know ahead of time the good, the bad, the ugly...things they don't share on more of the 'commercial' sites...

thanks so much,
A

amk,

You might find the Beginning Soliris thread to be interesting.

You are correct, by the way, that clone size is the primary indicator for thrombosis risk.

My 17 yr old son has been on Soliris for 8 months.
He had never had a blood transfusion but has a very high clone. His LDH went down alot almost 500 points just after one treatment. It is a big commitment but worth it if it keeps him from having a major stroke or clot at his young age. He goes two times a month for about 1.5 to 2 hrs (longer for the first few treatments 3 to 4hrs) and he feels so much better.
He does however talk a daily penicillin, do to being in the 1% of people who got meningococcal even after getting the vacc. He also did not get a port, the risk of a clot at the port site is high for pnh and if you have good veins there is no need to risk it.

Hi Shelby and Neil,
Thank you so much! It is super helpful to hear these updates. I am glad Solaris has been helping!

Shelby, does your son have any side effects such as headaches or nausea, or other than the anti-biotic, he feels OK? Has his energy improved much? And, did he have abdominal pain before that is no longer occurring?

If you have any other info would greatly appreciate!

thanks!
Aimee

Hi Aimee,
Yes my son still has the abdominal pain, not sure if that will ever go away totally. He does feel much better with energy and headaches. He has had no other side effects from the Soliris. The only other meds he takes are a multivitamin and folic acid and the penicillin.
He is able to go snowboarding and ride his orv and just hang out with his friends without feeling sick all the time.
He did have to miss his great grandmothers funeral because it was 4 hrs away and we could not find an infusion clinic near Detroit that would give him his Soliris without wanting to see him at an appointment first. The furneral was on the same day as his treatment. So if you take a trip try to plan trips around treatment or try and find a clinic ahead of time to set one up, the one source case managers are great with stuff like that and when you are on Soliris you get a case manager.
I hope this info helps you, and I am glad to answer any other questions you might have.
Good Luck

Shelby

Thank you Shelby, this is very enlightening!
I was wondering about travels, and that is good to know.

Does your son have classic PNH?
I am bummed to hear of the stomach pains still occurring as that gets very debilitating at times. Did it lessen. My dr. says most of that should go away...

Also, did they say once you are on it, you can't come off of it...I ask my Dr's asst but have not heard back as to whether that would create complications.

thanks so much again for your time, this info is invaluable!!!!

Yes Aimee he does have classic pnh. The abdominal pain is not bad he can usual just deal with it and go to school or work or play.:)
As long as the Soliris works, to my knowledge he will be on it forever or till (if) he goes with the BMT his sister is a match so he is looking into that right now.
That is our current struggle do we keep him on Soliris for the rest of his life or do the transplant.

Hi Shelby,
yes, that's a big decision! Glad he has a match!!! I am wondering why you are considering if he is doing so well? If you feel like sharing...

Also, to confirm are you saying the abdominal pain is minimal and has gotten better on Solaris?

thanks,
Aimee

Hi Amiee
My husband has been on Solaris since November. In the beginning he had head aches and a REALLY runny nose and post nasal drip after treatments but those have both gone away. We love his Nurse case manager that has been apart of our lives since starting Solaris. She has been so helpful in a supportive, financial, and knowledgeable way! His transfusions drip about 45 mins (the first couple visits they dripped slower, gave more saline before and after, and watched he wasn't allergic) so as long as they have a chair open for him it's not long at all! His nurse case manager is looking into him having home infusions as soon as his blood counts normalize(mostly low due to SAA) that will be nice and actually cheaper then an office visit!
His LDH dropped about 200 pts after his first couple treatments;)
Just remember its very important to have a meningitis vaccine 2wks prior to starting!And if you do start Solaris make sure the nurses give you every last drop!
We agree about the port. My husbands veins are good and the medicine isn't hard on them.
Keep a binder of all your treatment dates, blood tests , LDH levels etc.
My husband said to tell you you'll feel like a million bucks after a few treatments;) I think he's being serious and funny at the same time bc of the price lol;)
So far they like you to comit to Solaris "for life" we choose to look at it as "until a pill, or something better comes along;) but people have come off solaris w strict Dr supervision. It is bc your body COULD go in hemolysis (hemolytic ?) crisis after stopping where the hemolysis gets very high and can cause nasty/dangerous effects from intravascular /extravascular hemolysis. like a clot etc.
But so many people have been happy w solaris.
Best of luck!
Heather

Hi Heather,
thank you! Great info here and chuckling bout the million bucks! Crazy...

So, if you dont mind a few more details -- it sounds like he has more energy and did he have other symptoms decrease/disappear?

Did he need a daily anti-biotic? Sounds like he is OK without one....

thank you to you and your husband!!!
Aimee

Happy to share:)
He seems to feel the best after a Solaris treatment.. A couple of days before treatment he seems a little more tired and his counts drop a little. It's something we are trying to keep a closer eye on to see if he needs to switch to 12 days instead of 14 days between treatments. I think this is mostly due to his SAA and the medicines he's taking for that.
Sooo...long story, yes the Solaris has helped w the PNH part of his Dx ;) it also has shown that a lot of people we at a lower risk of getting a clot on Solaris , so that's great news!
No he never needed antibiotics w Solaris. I have heard a couple people do but I think that's case specific. Maybe white cell counts, lifestyle, clone size? He takes loads of prophylaxis meds now bc of the cyclosporine affecting his immune system to treat his AA.
All in all the Solaris has been great. Easier then what most medicines are when infused(time etc). Blessed our insurance covers it! And less side effects then some of the ads I hear on tv!;) it's so good your educating yourself! You may look into contacting a nurse case manager before you start (if you do) to answer some questions

Also I just remembered there is a new drug in clinical trials that is supposedly going to be better then Solaris called TT-30. Alexion just bought the rights to that med (Solaris is owned by alexion) if I remember right they are working on getting participants that have not been on Solaris. I think its in trial phase 3? I can see if I can get that info emailed to you if you want?