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19 Sep 2019 18:23
  • JJ
  • JJ
Just one thing about lymphoma. Most who have an indolent lymphoma do not have low platelets. In fact they usually have completely normal blood. I have had lymphoma for a few years so I know a bit about it. I can't imagine any good doctor prescribing a scan when there are no symptoms. It really is not a good idea.
19 Sep 2019 18:51
  • poseymint
  • poseymint
JJ- Thanks for sharing your story and insights, very interesting and helpful. I wonder if your immune system is coming back from the rituxin now? From what I know it usually wears off in 6 mos and the Bcells come back. I agree that rituxin is a risky drug and not to be taken without understanding the risk.

ManifestMe- People can have long remissions from rituxin. Hard to know if it will work for you. Most people have no side effects except a reaction to the infusion. If you get a scratchy throat, swelling in face or throat immediately tell a nurse to stop the infusion. They usually give more benedryl then and start up at a slower rate. It took me 9 hours for my first infusion because I had a scratchy throat reaction. Read about it under "treatments", it works about 60% of the time they say.

Several people on the forum have had serum sickness that was undiagnosed in the ER and dismissed by their own doctors. They had I believe permanent damage from it. (not sure if Janet has completely recovered) Not my doctor, nor anyone said a word to me about serum sickness when I was given rituxin. Good to be aware of the symptoms for anyone taking rituxin.

For me, Rituxin worked a bit, my counts came up to around 20. I was able to taper off of prednisone. I had one unusual side effect- water tasted so good, very refreshing. Then after 6 months my counts came back down to around zero and water tasted like water again. So not a big response. My hematologist didn't want to do it again for such a small response. I went on to Promacta then.
19 Sep 2019 19:49
  • ManifestMe
  • ManifestMe
Thank you for the reply poseymint! I have done research and I’m still a bit nervous about this Rituxan thing because there are so many mixed opinions. I’m hoping that it works as I’m on 80mg prednisone and I’m extremely new to this ITP thing but I know that I don’t want to be on Prednisone for too long due to side effects. It seems steroids work well for me especially when my levels jumped so high within 3 days. But who knows! I know this will be a journey and I’m glad to have found a place with so many knowledgeable folks. Hopefully the Rituxan goes well and thank you for telling me about the serum sickness I looked into it more! I’m trying to find more Rituxan talk but I have searched and searched on here and it’s hard to find a lot of folks who have tried it and shared their experiences. I’m finding a lot of mentions but not in depth experience. I read and someone said promacta was for production problems. I’m pretty sure I have destruction problems so I don’t know if Promacta would help in my case. But I could be wrong I’m not totally knowledgeable in this.
19 Sep 2019 20:25
  • karenr
  • karenr
I'm another person who has never noticed any change in platelets due to flu vaccine. I've had ITP since 2000, and I've had countless flu shots.
19 Sep 2019 21:12
  • karenr
  • karenr
I've not been on the forum much lately because I'm 20 days out of hip replacement. Now that I'm finally feeling almost human again, I'll describe the ITP component in this surgery in case it's useful to anyone contemplating surgery or in case anyone has comments or suggestions. In 2002 and 2012 I had knee replacements without any ITP complications. I was diagnosed in 2000 at age 59 and have treated mostly with prednisone all these years--without real difficulty until the summer of 2018, when my body turned against the pred. (I posted about this and got helpful feedback.) Since then, I've been on a difficult taper. I began Promacta, which upped my platelets to 615K, at the highest. Hema experimented--went from 50 mg Promacta every other day to 25 every other day, meanwhile dropping slowly the prednisone. When platelets dropped to 16K in March, hema raised promacta dose to 50 mg/day. Platelets ranged from low 100s to 200K. Hema hated to drop promacta further while I was dropping pred dose.

Before the surgery, I had, with difficulty got down to 5.5 mg pred/day. I have had the constant dosing advice of my endocrinologist during all this. Just before the surgery, I was given, like other patients, 100 mg hydrocortisone. A few hours after surgery, I took 20 mg of pred, 10 mg next day, 7.5, the next, back to 5.5 the following--but I felt really terrible on the low dose. I didn't want to lose all the effort of getting to 5.5, so I've maintained that, but having both the post-surgery pain and the pred-withdrawal symptoms have made my recovery really grim. I'm having fewer pred-withdrawal symptoms now, so I think I'll be able to eventually drop even lower, but not for at least couple more weeks and then very slowly. Endocrinologist will run adrenal tests once I get to 5.25 or 5. It's pretty clear that my adrenals aren't working right, however.
Surgery has always raised my platelets for 4-8 weeks. For 2 weeks I was on Lovenox, a blood thinner, so I didn't worry much. Expressed my concern to hema when platelets reached 516K two days ago. Hema is worried about lowering Promacta dose too quickly, so I'm now on 25/50/50 mg. I think he'll be agreeable to my lowering the Promacta dose more if my numbers stay high. Weird to have to worry about too-high platelets!
19 Sep 2019 21:38
  • MelA
  • MelA
You have had quite a time of it Karen - hope that you can continue to decrease and eventually get off prednisone! I know nothing about Promacta so can't comment or help you there. I'm glad your hip surgery was successful, hope your pain has decreased if not gone completely and the rest of your recovery goes smoothly!!

Just before the surgery, I was given, like other patients, 100 mg hydrocortisone.

Karen what do you mean by you were given 100mg hydrocortisone "like other patients"?
19 Sep 2019 22:48
  • karenr
  • karenr
I was told all hip replacement patients were given a dose of hydrocortisone before surgery. I don't know if they all get 100 mg, or if it is determined by weight. I've been told I'd receive hydrocortisone before other surgeries too, so I think it's pretty standard practice.
19 Sep 2019 23:17
  • MelA
  • MelA
That is interesting - I had knee replacement this year and I don't believe I had it.

Take care now!
20 Sep 2019 00:32
  • Hal9000
  • Hal9000
ManifestMe, a 125 response from Dex sounds like a pretty good response. A good steroid response is good predictor to Rituxan success, but not great/perfect as you already have discovered. As I recall, one's chances are slightly better too if one hasn't had ITP long. The 2 to 3 baseline response is a little worrisome but I've not collected hard data on that subject. What I do like is your doctor putting on 80mg while receiving Rituxan. I'm pretty sure that concurrent Pred or Dex either one increases ones chances of Rituxan success.

On Promacta/Nplate. Those are good for either platelet destruction or production problems either one. Most everyone responds to them. Those that don't, more and more, it looks like they just need a higher dose than is commonly recommended.

Good luck with treatment tomorrow. Be sure to slow down the administration if you start having a reaction as Posey describes. This is important. Don't be brave. A slower rate can make all the difference.
20 Sep 2019 01:14
  • Hal9000
  • Hal9000
Oh my, hip replacement. Glad 20 days has put you into feeling more normal. My mother broke her hip this past Sunday. Has a plate to rejoin it. Was moved to 'rehab' today. I know from reading on the subject that replacement is a much bigger deal than a break. Hope recovery continues to go well for you.
On the 516 count. Are you thinking it went that high because of the Pred pulse? Or, that an operation on bone has contributed most - like with knee replacement?
Is that hydrocortisone or hydrocodone? AFAIK my mother got hydrocodone (for pain), but don't know for sure.
20 Sep 2019 09:11
  • CindyL
  • CindyL
Manifest, I was diagnosed in 2004 and had Rituxan in 2011. I had success right from the first dose. My counts kept rising and I was actually surprised when I got the last treatment. I had no issues with any of my appointments.
Good luck.
20 Sep 2019 15:39
  • karenr
  • karenr
Hal, it was hydrocortisone, the steroid. I think my endocrinologist said 100 mg of hydrocortisone injected equals about 20 mg of prednisone taken orally.
20 Sep 2019 21:59
  • ManifestMe
  • ManifestMe
All of you I really thank you for your advice. Hal - your “don’t be brave” stuck with me during my experience and I definitely had reactions to the Rituxan. It took me 9 hours and every time I felt something off I said something. I had a scratchy dry throat for my first reaction and my second reaction I got hives. This happened each time about two hours in to the ritux. I got through it though! I ended up having 150/hr so very slow but that’s what worked for me. I feel like my nurse was trying to rush through so she kept bumping up the amount and that’s when I’d have a reaction (pretty sure she wanted to go home as they closed way before I’d be done with my ritux) I ended up having to finish it up in a different part of the hospital. I feel good I got my levels checked as I do weekly and they are at 192!!! From last Friday’s 18! I was so happy but mind you, I’m still on the pred and I know ritux hasn’t kicked in that quick. We shall see how my body responds. Thanks you guys!

Cindy- that is truly amazing! So happy for you! We all wish it were that easy! Haha!
21 Sep 2019 04:29
  • mrsb04
  • mrsb04
Any patient on long term steroids will generally be given hydrocortisone pre major surgery
21 Sep 2019 09:34
  • drbean7218
  • drbean7218
The platelet count was 71 on 17 Sep 2019.

The combination of my treatment:
a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Eltrombopag - 25 mg daily
c. Prednisone - 20 mg daily
d. Folic acid - 5 mg daily
e. Famotidine - 20 mg daily
f. Valaciclovir - 3,000 mg daily

I have shingles on my chest and right-hand arms since last Monday, so that I have to take Valaciclovir.
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