New to pnh

[Heather8773]

My husband has recently been dx with PNH.

Looking to connect with others! Any advise is appreciated!!! He has had 6 treatments on eculizumab (Solaris). Anybody know of a Pnh specialist in Houston? We have an amazing hematologist and his staff are so sweet but we are only his third case. Any advise on how to get platelets up? His are 17 (and have lowered from 21 in 4 wks) how to get WBC up?

[Neil Cuadra]

Hi Heather.

I hope your husband is tolerating Soliris well, without side effects (headaches are common). Be sure to tell the doctor immediately if Ronald has a fever.

Since you're in Houston you might contact Dr. Lawrence Rice at the Methodist Hospital. He's very experienced with PNH.

Has the treatment reduced Ronald's PNH symptoms? Do you know if he has aplastic anemia too? That may be the case if his initial symptoms included low platelets and a low white count. Soliris doesn't help bring up a low white count so you might ask his hematologist about drugs called G-CSF (granulocyte colony-stimulating factor) or GM-CSF (granulocyte macrophage colony-stimulating factor). Platelets can be transfused. Avoid aspirin, since it interferes with platelets.

To find other PNH patients and caregivers I suggest that you join the PNH Support Group.

[Heather8773]

Neil

Thank you for the advise! I asked his hematologist if he had AA and he said no, but that before the bone marrow biopsy results came in that was something he was looking to rule out/ or dx. His WBC after 2nd treatment was 2.8 (awaiting newest results)

Thank you for the name of a specialist! And for asking about his treatments. He seems to feel better the days closest to his treatment. This is the first time he went to bi weekly and I'm wondering if it was better weekly because I could really see how weak he was getting 2 days before. As for side effects he's doing pretty well a really runny nose first day of treatment only, and a head ache (not to bad considering other side effects possible) right before the third treatment his blood was taken and his LDH had come down just over 200 pts! Very happy to see after only 2 treatments!

Thank you I will ask about the medicine you informed me of. We are hoping that the hemolysis is what have been affecting the platelets. With the LDH coming down we hope that platelets will get more normal (although we know Solaris is not to treat that).

I'm so happy that we can feel less alone because of sites like this!

[Neil Cuadra]

Keep in mind that the doctors goal is to get the patient back to good health and good long-term prospects. That's why they may follow a treatment schedule that's proven to have the best results in clinical trials, rather than basing the schedule on what produces the least side effects or the most comfort during the treatment process. If those goals don't align, "long-term health" usually wins, and for good reasons.

[Heather8773]

That is a really good point. Thank you! It helps talking through these thoughts/decisions. Another reason I'm happy to have found this!

[Heather8773]

Neil we finally are seeing Dr. Rice Monday! We are excited to see what advise he has!

Since joining, my husband dropped dangerously low in all counts. thank y'all for the advise. Between the drop and advise to see an expert we have realized the importance in seeing Dr. Rice.

[ssdavi71416]

I hope everything goes well. I hope you can get the counts up! Be patient with the disease effects. Many times it takes a long time for a treatment plan to work properly with the bone marrow diseases. Best Wishes.

[DonnaM]

Heather, Dr. Rice is my doctor, too. He is an absolute genius, very thorough and scientific. His office and also the Methodist Outpatient Clinic treat their patients with great care. Your husband will be in good hands there. I only have checkups every 8 weeks now. I will see Dr. Rice on Jan. 24th. Let me know how the appointment goes.

[Heather8773]

Scott and Donna thank you both so much!

Scott thank you I am looking forward to that too! Waiting is hard but it is all we can do

Donna thank you for sharing your experience! It is nice to hear that directly from someone who is treated by Dr. Rice. I know he has a great reputation but im happy to hear a first hand account!

Excited to meet with an expert and nervous bc in a way it feels like starting over.

[Heather8773]

Scott and Donna

We are having 3more units of RBC s and new bmb this week. His dr suspects my husband has AA more so then PNH.
So may be looking into AA treatment options after new bmb results. Any thoughts y'all are willing to share? Thank y'all!

[DonnaM]

Heather, I'm sorry to hear that your husband has to have another BMB since they are definitely not pleasant. Dr. Rice will be able to give your husband a definite diagnosis with a good BMB to base the diagnosis on. I brought the slides from my local hospital to Methodist Hospital when I checked in for treatment, and Dr. Rice was surprised that my local hematologist and pathology lab did such a good job. He said that most of the BMB's have to be done over. Let us know how it goes.

[Heather8773]

Donna thank you your right my husband is really not looking forward to bmb but he is being so brave bc he knows we need a true dx I'm proud of him