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  • MelA
27 Aug 2023 15:45 - 27 Aug 2023 15:46
Always appreciate your opinions & expertise mrsb!

I think we all need to realize that covid is not gone either - 4 friends just got it, believe a booster which will include the newest covid variant comes out next month.  

Nick I've only had prednisone and WinRho as treatment so I can't help you - but as mrsb said:  Good luck and keep us updated!
  • mrsb04
27 Aug 2023 04:58 - 27 Aug 2023 15:42
 Nick,

A small number of patients only in the study but interesting all the same.
Have you read this?  link.springer.com/article/10.1007/s00277-022-04786-y#Sec5   
If you cannot access it I have a pdf copy I could e mail if you wanted. 

As a retired renal  nurse I would err on the side of caution and if you do choose cyclophosphamide please ensure you have your kidney function checked prior to treatment then, assuming it is ok, monthly thereafter. Over the years I nursed several patients who developed a degree of kidney failure as a result of taking it, some of whom ended up on dialysis. It also has many more horrendous side effects. 

I too am refractory to many  treatments (Azathioprine, MMF, Romiplostim, Eltrombopag, Fostamatinib, Rilzabrutinib, IVIg).  
High dose steroids  work but obviously that  is not a long term answer.

Admittedly I have yet to try Rituximab. When I was diagnosed 9 years ago I had 2 young grand kids (i.e. germ factories) I would have had  to stay away from.   I could not do so as I provided child care for their working parents.  They are older now so I may well have to try it sometime.

I notice you haven't mentioned Avatrombopag (Doptelet). It might be worth a try. I have  been taking it since March this year with no noticeable side effects.  It has taken a while to sort the dose out but am now on 20mg 3 times a week,  my last platelet count was 64. 
 
Good luck with whatever you choose and please update us as and when.
  • mrsb04
27 Aug 2023 04:20
Replied by mrsb04 on topic Blood clot in Jugular with infection
Sounds dreadful. I hope you are feeling better now 
  • ncanaday
26 Aug 2023 19:07
Hi All,

I have been doing my own research because of the severity of my ITP case. Just a reference I have previously been on Steroids, IVIG, Rituxan, NPlate, Promacta, and now back to NPlate. Rituxan gave me a year of remission the first year and about 6-8 months the second time. I also have a very small therapeutic window according to my doctors with NPlate I have to get shots every three weeks because I overly respond or under-respond. My last injection was at 12, and my numbers every three days after that were 12 (again), 12, and then 501. The shot dose is 2mc and when we have reduced it, I go down to single digits. This has been the cycle for at least three months or so and it is really starting to concern me, be of the effects of the roller coaster.  Because of my response to treatment, the doctors have told me I have refractory ITP and called me brittle with a small therapeutic window while sharing with me that I am one of the most complicated patients they have ever treated. I know you all can relate to these complications of ITP so I'm not trying to be extra special, but I am trying to find some kind of treatment that may work for me. Today I came across this study and it showed a great response, so I thought I would check and see if anyone has done these together as a combined treatment. I have attached a copy of the link and the outcome data just for easy reference, but I am also curious if anyone has just had cyclophosphamide and I am curious how that went.

Feel Free to share your thoughts.
- Nick

Here is the link to the study:  www.ncbi.nlm.nih.gov/pmc/articles/PMC6395969/
Here is a clip of the outcomes:
GroupsCompletely effectivePartially effectiveMinimal effectiveIneffectiveTotal effective rateaP<0.05, compared with rituximab groupbP<0.05, compared with cyclophosphamide group.
  • amberyard
23 Aug 2023 20:24
Blood clot in Jugular with infection was created by amberyard
Back in January I went to the hospital for pain in my ear and neck. Was sent home on antibiotics. The following week went back and had a ct done and was admitted for a week heparin drip, removed my port and three antibiotics. I went on the day before my birthday and had to go to infusion daily for iv antibiotics 
  • MelA
23 Aug 2023 00:34
Fantastic news mrsb!!   
  • CindyL
21 Aug 2023 08:56
That is great news!  So happy for you mrsb!
  • mrsb04
21 Aug 2023 08:22
Count is 64....Avatrombopag 20mg 3 times a week, Pred 2mg a day.
Promoted to fortnightly bloods. 
  • Geri
20 Aug 2023 15:36
Cytoxan was created by Geri
Anyone have experience with cyclophosphamide (cytoxan)?
  • MelA
19 Aug 2023 00:21
Replied by MelA on topic Here we go again!!!!!!
YES !!
  • CindyL
17 Aug 2023 09:00
Replied by CindyL on topic Here we go again!!!!!!
Mel, so far, so good!  I think it's been a month since I've had this issue.  So we shall see what happens in the next little while!
  • Vancouver40
16 Aug 2023 15:35
Recently, I've come across discussions on Oxalate poisoning from foods, such as Spinach, Rhubarb, Swiss Chard, and a host of other seemingly healthy vegetables. My onset of ITP did come around a time coincidently when I also ate raw spinach daily. I don't know if this was the exact cause but as I'm learning now, oxalates are plant toxins that can accumulate in your bones and bone marrow, where blood is produced, including platelets, and can interfere with their production. They are difficult to eliminate from the body. I read above that while pregnant you were consuming green smoothies daily. Wondering if oxalate poisoning from the daily spinach and kale was a potential factor in your platelets being consistently low, despite you adjusting your diet several times? 
  • MelA
16 Aug 2023 14:19
Replied by MelA on topic Here we go again!!!!!!
Cindy how are things going with getting on here??
  • MelA
16 Aug 2023 14:14 - 16 Aug 2023 14:17
Replied by MelA on topic Tamiflu
Oseltamivir was well tolerated with a good overall response rate and was useful for treating chronic ITP. We observed an initial increase in the number of platelets; however, this response was not maintained
Apr 26, 2022
National Institutes of Health (.gov) pubmed.ncbi.nlm.nih.gov  › ...
  • MelA
16 Aug 2023 00:16
I would go with what my RA doctor advises!!

I know ITPers shouldn't take echinacea.

www.mountsinai.org/health-library/herb/elderberry
"If you have an autoimmune disease, such as rheumatoid arthritis or lupus, ask your doctor before taking elderberry, as it may stimulate the immune system."
  • Lhjohns48
15 Aug 2023 10:45
I want to take elderberry for my platelet count to go up, but if I do, will it adversely affect my RA??
  • Lhjohns48
15 Aug 2023 10:44
Tamiflu was created by Lhjohns48
Has anyone had a positive increase in platelets from having the Tamiflu series of drugs when you’ve gotten the flu type a?   My platelets were down to 70,000 and I got the flu and took the Tamiflu medication for seven days or whatever it was and my platelets jumped up to 400,000 and they’re still just gradually coming down; I’m at 200 now about three months later. Interesting …..makes me wonder what’s in the Tamiflu and if any research has been done.
  • MelA
13 Aug 2023 00:29
Replied by MelA on topic Surgery - blood thinners
As I said - my former hematologist said a count of 50,000 for platelets would be good for brain surgery.
I don't even know what my count was for each knee replacement, my surgeon was quite knowledgeable about ITP and aware I had it.   
But you need to have or be near the count the surgeon says he/she wants.  

What is your count now wildhag?
  • 1wildhag13
12 Aug 2023 02:00
Replied by 1wildhag13 on topic Surgery - blood thinners
Hello,
I think the 'standard' for major surgery is 100k. My orthopedic surgeon wants 100k. Yes, there will be blood thinners for a month. I don't know the name yet, but whatever it will be, it has to be at the lowest dose, says my hematologist. I don't quite understand why with ITP the platelet life span is less than 5 days.
  • AnnaM
03 Aug 2023 06:25
Hi RinJin,
My case is a little similar to yours although my platelets are falling slower. I was around 120K at 20, and now my counts are around 40K at 38 (so about a 4K decrease per year). 
Do you have bleeding symptoms or not ? If you don’t, a 48K count is usually not a problem and doctors probably won’t want to treat you for now. 
The important thing is to have a competent doctor following your case. 
In my case, when my counts dropped too low during pregnancies, they tried prednisone and IVIG and my count didn’t go up. Combined with a few other factors, they thought in might be genetic and I’m now waiting for some genetic test results. Preliminary findings seem to indicate it really is a genetic disorder. 
ITP is a diagnosis of exclusion, if you’re having doubts, you should discuss them with your doctor(s). 
Could you provide a few more details about your condition? I’ve been trying to find other people with steadily dropping platelet counts but I haven’t had much luck. Have your platelet counts always been under 150K? Do other people in your family have low platelets, or bleeding symptoms? 
  • CindyL
02 Aug 2023 08:45
Wow, mrsb, talk about a yo-yo count!  Hopefully they can find the right dosage for you soon.
  • mrsb04
02 Aug 2023 04:16
Count now 131 so Avatrombopag is working but  finding the appropriate dose is proving difficult 
  • mrsb04
02 Aug 2023 04:13 - 02 Aug 2023 14:13
Replied by mrsb04 on topic Surgery - blood thinners
Gerlinde
Average lifespan of platelets in ITP is generally less than 5 days as opposed to 7-10 days in none ITPers.  
Newer platelets are larger and more sticky than mature ones thus risk of thrombosis is increased. This is why treatments are supposed to be at the lowest dose possible to keep counts above 50. 
My haematologist told me at diagnosis (9 years ago) that should  I need surgery with a count above 50 I would require subcutaneous Heparin injections whilst activity was reduced. 
  • Juliandrea85
31 Jul 2023 17:42
Replied by Juliandrea85 on topic Relapse of ITP after 22 years
Hello!!
Yes and it helps a lot during heavy periods. In spain is called amchafibrim.
  • MelA
31 Jul 2023 13:43
Replied by MelA on topic Surgery - blood thinners
Gerlinde I had both knees totally replaced in 2019 about 10 months apart.  There was no question about my platelets, my surgeon knows about ITP and didn't question my count, however he did have a count done a week before.  I can't recall now what it was.          After each surgery I was put on baby aspirin for a certain length of time - and my hematologist had a count done 2 weeks later and you know what, my count went UP while I was on the baby aspirin both times!   I am not on a treatment for ITP so can't tell you about having an increase in dosage - do know an oral surgeon wanted me to have a certain count before he would do surgery to cut the gum to get to a root, but my count ended up being ok with him.

Late last year I was put on a daily baby aspirin forever - again, my count has gone UP.   Crazy huh? 
I'm no spring chicken and have had ITP since mid-1989.

I'll tell you - a former hematologist told me she would be happy with a count of 50,000 for brain surgery.   I wanted a closer hematologist as I didn't like driving downtown so that's why I don't have her any longer.  

What is your count doing now?   Are you still on Nplate?
  • 1wildhag13
31 Jul 2023 09:57
Surgery - blood thinners was created by 1wildhag13
For later this month I have a total left hip replacement scheduled. Since I have been mostly on Nplate, my hematologist will use that to calibrate my plt count. My orthopedic surgeon wants a count of 100k which is ok, but I would like 100+. The surgeon, he tells me, will need to use a blood thinner after surgery to reduce the chances of getting something like deep vein thrombosis. How does that work?
I would like to hear from others who had a thr, and dealing with the blood thinner issue. As for platelet management, did your doctor increase the medication to account for fluctuations? For example, if the goal is 100, did your hematologist raise the plt count to 150 prior to surgery to make sure the 100k will be there on the day of the surgery? Anything else related to this?
Thanks!  Gerlinde
  • MelA
29 Jul 2023 00:12
Replied by MelA on topic My Remission Story......
Toby do let me know if you try the 600mg of Alpha Lipoic Acid (capsules, so easy to swallow) - if going to work you won't get an immediate response.  Wish I could recall how long it took, I'd give it a few weeks just to be sure.

Good Luck!!!
  • Toby-Wan-Kenoby
28 Jul 2023 15:09 - 28 Jul 2023 15:10
Replied by Toby-Wan-Kenoby on topic Rituximab
Can highly recommend nPlate. A TPO argonist. Once a week injection. In Europe at least I was able to inject myself after being shown just once. Makes travel easy. In. my case it stoped working after a while. Then tried all the other TPO stuff and after getting on cortisone we tried nPlate again and in combination it worked really well for me. 
  • Toby-Wan-Kenoby
28 Jul 2023 15:02
Replied by Toby-Wan-Kenoby on topic My Remission Story......
MeIA, I have neither got diabetes nor any cancer history. So seems autoimmune as well with me.
Stated like 10 years ago with just a slight tingling in my toes but since then it is full on numbness also from the knee down. Will try the 600mg and see how it goes. 

ONE THINGH AT A TIME. For me it was ITP at the center of things. Now that that has retreated I can focus on the next thing.
  • mrsb04
27 Jul 2023 04:32 - 28 Jul 2023 04:53
Replied by mrsb04 on topic Relapse of ITP after 22 years
Juliandrea85
Have you tried Tranexamic Acid during your periods? 
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