I have no idea about weight lifting - however if you have asked the doctor [hematologist?] and he/she said it was fine then I'd assume it is fine.  As you know since you used to weight lift you must start off gradually.

mrsb I am so sorry about your hamstring injury, that must be painful and miserable!  So glad you have good friends who are happy to get some exercise with your dog!    I sure do like what the registrar said to you yesterday about your 30k and that if need be you can "gently" tweak the dose!  Sending you good thoughts!!

Thank you Cindy it is frustrating. I am normally very active but am now restricted to pottering around the house with one 15 minute walk a day. Fortunately for the dog a lifelong friend and her hubby are happy to take him out for walks.
An exercise programme  to follow  and back at the therapist in another 9 days. 

Oh, no, mrsb, I hope the injury isn't too severe!  And I also hope your count doesn't drop any more!

It was 30 Mel but I'm not worried. I have recently sustained a hamstring injury which has thrown me out of kilter completely. Spoke to a lovely registrar yesterday who said "30 is fine by me, you have no symptoms so let's not chase the count. Carry on as you are and retest in a week. Hopefully it is just the shock and stress of the injury causing it. If not then we will think about about gently tweeking your Avatrombopag dose." 

Hi!
I used to do some weightlifting before I encountered ITP. I need to get back in shape a little. I once asked the doctor here and he told me it was fine and I could lift weights. I am worried about stretching veins and bleeding. Any ideas?

Oh mrsb that is a great count !!    Let us know what this next test shows!

That's a good number for you.  I forgot you were getting tests every fortnight now.
Fingers crossed you're not under 10!

ITP Guy
My haemo told me she has a patient who only takes one tablet a week, I don't know the dose though.
 

Cindy 
Last count was 60, getting another test on Friday but won't get results until Monday unless count is under 10.

Hello Mel,
Thank you for your reply. When I was first diagnosed, my hematologist put me through the usual tests including bone marrow biopsy (hip), spleen ultrasound (normal size), and 4 or 5 days of high dose of oral dexamethasone. The steroids did nothing for my platelets, so he told me if my platelets go under 30, he would discuss Rituxan treatment. I was very much against it because of the side effects and possible brain infection. My hematologist allowed me to make the decision to hold off on Promacta for two weeks to see if the pomegranate juice works. However, 2 weeks ago while going over my medication history with my new gynecologist, M.B., she asked me how long have I been taking Promacta? I said what? I’m not taking that! Not yet at least. She said it just came up on her computer screen that I was. Oh boy, was I not happy! M.B. remarked “Hmm…that’s a “cluster”!” So, you see, my hematologist is very gung-ho on me being on some kind of medication or treatment whereas I am NOT. He didn’t even wait the 2 weeks he said he’d give me to see if the pomegranate juice works! I’m not feeling very confident with him at this point, but all the other hematologists in my city are in the same health system so I’m doubtful a new doctor would be any different. They all push for these obscenely expensive drugs and treatments without discussing diet changes. My diet changes have worked so far.

i’m sorry your platelets went down after your tetanus shot. I learned that happens to most people after a vaccine of any kind, even in people who don’t have ITP. Good thing you put your foot down against Predisone! I’m very happy for you that Win Rho has worked for you! My doctor has never discussed Win Rho with me. Maybe my other autoimmune conditions exclude me from benefiting from it and that’s why he’s not mentioned it? I don’t know. Ugh. It’s all been so overwhelming…these past 3 years. 

Just a quick reply, will read this thoroughly later.
Wanted to say that Rituxan is not usually the 1st line of treatment - I'd question that too.  

Is your hematologist letting you help make the decisions on treatments?
I remember when a tetanus booster dropped my count to the gutter and my hematologist took out her pad to write a prescription for prednisone, which I had taken before - told her I would not take it because my son was getting married in a few weeks and my bruises matched the color of my dress.   She then had her people call my insurance to see if they would cover Win-Rho, they did and I had one IV and haven't had to treat since.   

I know nothing about promacta but I'm sure someone who does will see your post!
Just wanted to say congratulations and I really hope that your count stays up there!
Keep us posted!

Hello all,
I am a mid 30 year old that was diagnosed with ITP about 9 months ago, when I had a CBC with a platelet count of 1. I was completely refractory to steroids (dex and pred) and IVIG only had marginal effects. I got on promacta about 8 months ago and had immediate success. My platelets have stayed pretty stagnant, around 150, even with reduction of dosage from 50 mg, to 25 mg, to 12.5 mg every few days. 
I am now off the medication completely. Has anyone experienced long term remission due to promacta, and is it possible it is permanent? 

Hello All, 
I’m new to this forum but have been perusing the PDSA website since my ITP diagnosis in September of 2020. This is my first post. 
When I learned I had ITP, my platelets were 30. My hematologist said if I get below 20, he would want me to start treatment, namely Rituxan infusion. I read up on that and the side effects greatly concern me as I already have other autoimmune diseases. I switched my diet to mostly vegetarian, eating a lot of sprouted pumpkin seeds, walnuts, peanuts, and kale. Aside from the benefit of losing weight, my platelets rose into the 50s. Then, in my research into foods that raise platelets, I discovered pomegranate juice. I drank 8 ounces daily for about 8 months and my platelets rose to 75. Very encouraging, and my hematologist said he doesn’t know how the juice works, but to keep drinking it because it obviously raised my platelets. Unfortunately, I developed high blood pressure (not from the pomegranate juice) and was put on Amlodipine. Through my own research reading scholarly articles and abstracts (which I can’t remember, sorry), I learned that pomegranates adversely affect most blood pressure meds (and antibiotics) the same way grapefruit juice/products do, so I had to stop drinking the juice. My hematologist never once mentioned this interaction. I stopped the juice and my platelets gradually fell down to 23 over the course if a year. Again, I adjusted my diet to drastically reduce my sodium intake to the point I no longer need to be on blood pressure medication. So, in August of 2023, I started back on the juice (I drink one 8.4 oz. bottle of POMONA 100% pomegranate juice a day on empty stomach) and my platelets are going up again (to 27 as of two weeks ago). If they continue to rise, I can confirm the pomegranate juice is highly effective. If my numbers go down again, my doctor will insist on putting me on Promacta. I took to heart the diet changes suggested by the PDSA website as well as from other well being sites related to ITP, and they’ve all made a positive impact not only in raising my platelets, but also slow yet significant weight loss the past 3 years. I’ll post here again with more news in a week or two with an update after a blood draw this Friday and another next week along with a consult with my hematologist.
From the beginning, he has really pushed for me to begin Rituxan and now Promacta if my platelets fall to 20. I’ve resisted. My doctor is relatively young and has never discussed dietary changes to increase my platelets. I feel if there’s a drug-free way to raise my platelets, that’s what I’m going to try. As patients, sometimes we must be the researchers; we must be our own advocate. At least for me, I’ve learned that my hematologist isn’t interested in diet changes. He has never even suggested it. He’s all about the expensive infusions and pills. Please understand I realize many people need infusions and drugs to control their ITP. I may be in that number one day, but until that day comes, if dietary changes can raise my platelets, I’ll continue my ITP journey with pomegranate juice, a low sodium vegetarian diet, and continued personal research. 

How are your counts, mrsb?

I've decided to not let it bother me, Mel.  It actually kept me logged in from yesterday.  I shut my computer down at night, so was expecting to have to log in today, but it came up as already logged in.  I'm not going to look a gift horse in the mouth.  Yeah, it can be annoying, but if it only happens every couple of months, so be it.
I don't know what else Jeff can do about it anymore.
I'm glad to hear your issues have seemed to straighten out too, mrsb.

Mel. It’s only happened the once to me. I have just logged on with no problems but will contact Jeff with screen shots if it happens again. 

 Have you 2 let Jeff know what is happening?

Hmm, that's weird, mrsb. Can you see your profile? Sometimes I can and other times I can't.  I can today.
I'll have to log in for a few days, then suddenly, I'll bring up the page and I will already be logged in.  I don't understand it at all.  I think it'll go for a couple of months before it happens again, once I get back to normal.

Happening to me too now  Cindy am told I am logged in on this page, but if I go to the recent topics tab it will show me as logged out and does not show I have posted this message. 

Thank you for replying MeIA! 
That is the conclusion I’m coming to: that every patient with itp is unique… what makes it frustrating for me is that I’d like to know if my symptoms and lab results are weird because I have atypical itp or because i don’t have itp at all. I know I'm not likely to find a definitive answer in a forum, but the scientific literature is frustrating. I feel like every time I try to dig for information, scientific papers fall short: “we don’t have enough data on pregnant itp patients” “we haven’t tested this on enough patients” “here is this algorithm because we don’t have the tests to determine who has itp” etc. etc. 
I even had the opportunity to see a professor who specialise in rare genetic platelet disorders and at first she said she thought I did have itp, but now she’s saying it might be genetic after all? It all seems very murky to me. 
I know it’s nobody’s fault, it’s simply where the science is as of today, but I can’t help trying to find if some people have a disease that looks like mine. 
(PS: 40G simply means 40,000, or 40 as we’d say as patients. 40G is just the way it’s written on my labs. Maybe it’s a french thing?)
But thanks again for confirming that bleeding symptoms don’t really correlate with platelet counts for you either! <3

It just started again this morning!  I can log in, but can't see my profile and can't stay logged in!  But I've been expecting this!

Sorry no one has been able to respond to you AnnaM.   I've had ITP for many years and have found all of us are different in symptoms.   I am not sure what a count of 30-50G means.   When I was diagnosed I looked like I'd been beaten with at 2x4 there were so many bruises on my body along with petechiae - when my count went way down after a tetanus booster I had no symptoms at all - when I was put on a baby aspirin a day to prevent blood clots after knee replacement my count went up in the normal range.   I do have many very dark red/brown bruises on my arms from bumping them - usually they don't bleed unless the skin rips open.  

I think I'd say there is nothing typical about ITP.

Hello everyone, I was wondering about bleeding symptoms in relation to platelet counts. When I was younger I hovered around 80G and I had menorrhagia, even though it’s not a particularly low count (it’s under control now, thanks to an hormonal IUD–I was resistant for years, but I have to admit it’s life-changing). Nowadays my count is between 30-50G, and I often have very dark bruises (almost solid black) and scattered petechiae on my legs. 
Would you say that is typical? What’s your experience with bleeding symptoms wrt platelet counts? 

Thank you for the article and I am going to submit both of them to my provider. He honestly has probably read them but hey, why not make sure?  

As far as Doptelet, I have not tried it but I think that was the next option after this next round of Rituxan. I think both my doctors are still not sure about it and so they want to give it more time before just prescribing it to me. Also, I can't remember and I can look it up, but is Doptelet another platelet stimulant? I don't have an issue with the production of platelets, it's the destruction I have an issue with so I know that is also a reason I haven't taken or been on certain medications. 

Anyway, I see the doctor on Tuesday, so I will for sure be sharing what I find out.

Are your numbers holding? Or are you having fluctuations? I was told, for me, the goal is to stay between 30 and 100 weekly, but as I shared I am bouncing consistently from 12, 28, 5, to 400, 500, 600, and even at one point up to1600 (this was after my first initial shot at a much higher dose) however since then, and the dose reduction, I have received the same dose every time. They are starting to get really concerned though about me clotting because of the spikes. 

Thank you again for the information, Talk Soon!

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!

 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.

Sounds dreadful. I hope you are feeling better now 

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.