Platelet Hope

Good morning! Hema Dr was just here. Platelet trending down. It’s on the 40’s today. Plan is steroid next 3 days to maintain platelet above 50 for surgery Monday. Apparently IVIG not holding up anymore for me.

Preparation for Surgery Splenectomy Monday. Platelet today 84 with solumedrol 40 mg every 8 hours just before surgery. To maintain level @above 50. Also, took Xanax 0.5 mg last night to help sleep and relax. Steroid isn’t really my cup of tea.

Good luck, Allie. I hope it works for you.

Good luck Allie. I will think of you tomorrow with healthy thoughts and prayers. Keep us posted.

When I had my appendicitis I found out that morphine helps one get to sleep.

Good luck...

Allie
How are you?

Hope you are doing well. Make sure you get up and walk as much as possible, it will help get the CO2 out after surgery. Roam the halls as much as you can stand, it really does help.

Scope recovery healing well. Thank God!
I had Retuxan before and found out not working anymore last November2016. I had them before with 8-10years remission in 2008.
Now I had plenectomy. I wonder if there’s treatment out there that can have potetial remission.
1.Day of surgery platelet 64 K
2. Day 1st post splenectomy my platelet went 250.
Treatment : Was given heparin SQ x 2 days
3. Day 3 dropped to 60 k platelet
4. Day 4 8k platelet I was so sad and burst into tears.
I hope there’s out there that I still can take to get to safe platelet count.
Or I heard another statement “people who Splenectomy losses 5 years of their life” is there proof or research on this?

I'm so sorry, Allie. Try not to lose hope. I have seen late responders in the past. It's also possible that you might respond better to a treatment now than you did before.

I've never read that splenectomy takes five years from a person's life. As long as you are able to stay healthy, you should be able to have a normal life span. There are many things that can cut life short for all of us. Just do the best you can and live a healthy lifestyle.

It's way to early to decide if the surgery worked or not. My hemo said it can take several months for the body to adjust to the loss of the spleen. Just take it slow and don't overdo it. You may have a couple of ups and downs in the next few weeks. Just let your body get back in rhythm.

Been doing that and it’s really helping. Thank you!

Yes you’re absolutely right. Patience is the the name of the game!

8 days after splenectomy. Wound healing well. Walking around the house.
Second dose of Nplate My count yesterday was 134. Next appointment next Tuesday. I’m hoping this will be the right treatment. Thank you all for being there!

apantoj1 wrote: 8 days after splenectomy. Wound healing well. Walking around the house.
Second dose of Nplate My count yesterday was 134. Next appointment next Tuesday. I’m hoping this will be the right treatment. Thank you all for being there!

Glad to hear that you are feeling better. A count of 134 sounds great! Congratulations. Don't worry about splenectomy success or lack thereof for at least a month. Your body is still figuring out what is going on and adjusting. As long as you are feeling good and don't have bleeding, then roll with it. Even if over time the splenectomy doesn't help much, it gives you a new "drawing board" from which to try all sorts of treatments again. Something that didn't work before may work for you now. Or maybe NPlate will be the ticket. Lots of options I have a failed splenectomy, and I don't worry about it taking years off of my life at all. Just take each day as it comes and live as healthy as you can.

Thank you for all these positive thoughts! I am grateful to all of you!

Had a Hema Dr appointment today and my 275k. Nplate reduced and CBC next week. I continue to be grateful and praying I’m on the right track.
Post splenectomy recovery is doing wonderful. Increasing my walking time everyday.
Thank you all for being there with me!

Great news! Glad your feeling good.

Platelet and treatment after Splenectomy
1. 1st day after splenectomy- platelet 200K, Nplate 250mcg, heparin sub cu
2. 2nd day after splenectomy- platelet 160K, heparin sc
2. 3rd day after splenectomy- platelet 60K, heparin discontinued
3. 4th day after splenectomy- platelet 8K, ivig x 2 days
4. 5th day after splenectomy- Discharged home after 2 dose of ivig was infused
5. Week 1 after splenectomy- platelet 134K, second dose of Nplate
6. Week 2 after splenectomy- platelet 275K, NPlate reduced to 180mcg
7. Week 3 after splenectomy- platelet 154K, Nplate 180mcg
8. Week 4 after splenectomy- platelet 9K * Nplate increased 250mcg. Follow up CBC in 2 days.

Have not been posting for awhile cuz I’ve not been well since February. My platelet has been responding well with Nplate. Had colitis flare up. Treated with anbiotic medrol pack. Continued to fatigue, feeling of being unwell and headache especially after Nplate. Decided to visit my primary Dr and she ordered several labs including ANA/DNA and they were so elevated. I was then referred to a Rheumatologist and was diagnosed with Lupus. After all added labs and 24 hour urine. This past Monday Dr decided to put me on Cellcept starting @250 mg for 1 week then 500mg twice daily. Apparently my urine has very high protein and he thinks I have lupus nephritis . Also Dr ordered kidney biopsy to determine acuity or index of my lupus nephritis.
Getting a little better everyday. This week I can say, I have an average of 4 hours of feeling good compared to few weeks ago. But I’m kind of scared to how much damage it has to my kidney. Anyone's input regarding this would be greatly appreciated.

I'm so sorry to hear that, Allie. I also have Lupus, but have never had nephritis. I hope you do well on CellCept.

I know an ITPer who is going through her kidneys dumping protein too - she was put on prednisone and cellcept. She had a biopsy & was told lupus nephritis - but evidently no other labs showed lupus. Good luck to you!

I hope she is doing ok and the medication is working

Thank you Allie I'll let her know what you said. She can't wait to get off prednisone, as all of us do who have to be on it - she has a urinalysis again I believe this coming weekend. Besides prednisone her main complaint is this has caused edema pretty bad. You take care & keep us posted.

I wish her luck on her follow up appointment!

I would like to thank you all for the support all this time I've been through.
I felt so Blessed and Appreciate you all so much.
- Nplate has been working great for my ITP. My Nplate treatment has tapered down with positive response and thanks God No more platelet count crash. My Hematologist was right that its easier to manage post splenectomy.
- But unfortunately another autoimmune kicked in May 2018. Biopsy confirmed kidney Membranous nephropathy and discussed with my Rheumatologist apparently its a “non aggressive type” (continue on Cellcept for Lupus Nephritis).
- Been on Cellcept 1gm twice a day for 16 weeks now. My lupus biomarker and symptoms has great improved. This time I got another problem Anemia secondary to cellcept. had 2 PRBC transfusion in a month now. My latest was yesterday.
- Today, my hematologist is planning to put me on either procrit or aranesp. This is to prevent blood transfusion. I'm just waiting for insurance approval.
- Although I'm frustrated but I nonetheless continue to be hopeful and hold on my faith more stronger in this new challenge.
- Anyone had experience with either procrit or aranesp? Or is there any other approach to anemia secondary to cellcept?

that lupus should have been diagnosed a long time ago. once you have ITP not testing that person for lupus is crazy to me.
then you were on so many different drugs for ITP it was so confusing. then they go to the spleen.
IMO they really don't know what they are doing. i hope things workout for you...but from everything you have said i'd get new doctors
even if things are looking up.

Yes I've been tested with Lupus several times the last time Sept of 2015. All were negative until this May 2018.

John, I was tested for Lupus once or twice after my ITP diagnosis and it came back fine. I didn't have any Lupus symptoms then. Eight years later, I did start having Lupus symptoms and still didn't meet the criteria for Lupus as far as labs go. It took another year and a half until I did. People can test negative upon ITP diagnosis but develop Lupus years later. It's not really worth testing for it unless physical symptoms are present. Labs can show anything but if a person feels fine, that's what counts. When you have Lupus symptoms, you know it.

Thank you Sandy for that reply. It’s what happen to mine.

Good morning. I hope everyone is well.
I was wondering anyone treated with Cellcept and facing Anemia or any side effect. Any intervention input?