TOPIC:

SO finally good news. After hovering between a count of 2 -12 over these last 4 weeks since this all began, the CBC today showed me at a count of 260 right before I received my 3rd Rituximab infusion and Nplate injection. This sounds good to me. Will have the final Rituximab treatment a week from now. Also my prednisone has been dropped to 10 mg a day for a week then will drop to 5 mg and finally I will be off of that.

SO that is a one week jump from 12 to 260. Hoping that it will stabilize and last but from what I read in hear about ITP there are no guarantees

Pleased for you that something is working, the big question is which of the two is increasing your count?
Unfortunately no there aren't any guarantees with ITP. Viruses and medications can cause relapses. After being stable for best part of a year my count was in the gutter last week (12) after taking the 1st dose of an antibiotic called Clarithromycin; 3 horrendous half hour nose bleeds (the first within 6 hours of taking the tablet) and bruises all over. Hb dropped by 5 as a result . I will never take that medication again.
I am now on a short sharp course of Prednisolone having just got off the wretched stuff in May after 6 years of it.

Steroid withdrawal symptoms are absolutely awful believe me I have been there and got the T shirt.
You will have been on Pred longer than 4 weeks and could well have a degree of temporary adrenal insufficiency. Possibly try 10mg one day and 5mg the next for a few days, that is the equivalent of the physiological dose of 7.5mg/day. Then when you get to 5mg/day have a couple of weeks at that before going any lower maybe alternating 5mg/0mg or 2.5 mg a day for a fortnight. You may need to taper even more slowly. Please have a look at this link pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/30450-advice-for-anyone-new-to-steroid-tapering.html#67676

I should have mentioned that my hematologist is weaning me off of Prednisone. I began at 60 mg a day for 5 days then brought down to 40 for around 5 days then down to 20 for 5 days(give or take a day I cant recall) now at 10 mg for 7 days and then 5 mg for 7 days and then off of it. That is the plan.

Even though my levels are good I still feel really crappy. Big time. I am assuming it is as much the medications and treatments as anything. It would have to be considering how high my levels are. I see also that my red blood cell count is still slightly under "normal" so that may account for some of this fatigue.

Apart from mild bleeding along my gums when I was at a sub 10 count I have not experienced nose bleeds or blood in urine or stools. I am grateful for that.

As someone who never really needed and never did go to the dr for decades before this all went down, I do not look forward to having to go regularly.

You are a trooper and real inspiration. So many of you here are. Thank you as always for the kind advice

Glad to see you have a plan. My concern is you feel crappy and have fatigue now so you may not be able to distinguish between this and adrenal insufficiency.
I have just discovered the link to secondary adrenal insufficiency has been changed to www.nadf.us/secondary-adrenal-insufficiency.html
I have amended it in the topic I linked to in my previous post earlier today.
Please read the links so you are aware just in case. Adrenal insufficiency can be very dangerous.

Wow 260! Something(s) is working, which is great. Now, onto figuring out what it is.

Glad you are getting of the prednisone. I don’t think it should be used nearly as much as it is, but I do understand why it was given to you.

As for your old postings:

It takes time to find a medication that will keep your counts stable. You try one, then wait a few weeks or more, then try another if needed and repeat. October isn’t that far away when you take that into consideration.

Also, it sounds like you need some time to heal and adjust. Since you can, I would take the time. I know it’s difficult to change gears in life. Sudden ITP is a shock on many levels.

Here are some articles that may be of interest to you:

www.hematologyandoncology.net/archives/august-2020/updated-recommendations-for-the-treatment-of-immune-thrombocytopenia/

www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(20)30270-8/fulltext

Enjoy some time at home with Sparky.

so I guess I learned a big ITP lesson today. I have been humbled and brought down to earth for the 4th time over the past 5 weeks since I joined the community of ITP sufferers. After being super stoked and exited with my count of 260 last week and gearing up and preparing to go back to work this coming Tuesday, when I went in for my final Rituximab treatment today my count is back down to 14. From 12 to 260 back down to 14 in less than 2 weeks. Terrible blow and shock. Optimism and ITP I think are incompatible things me thinks.

Try not to become despondent crashes happen.
You may just have a slight, asymptomatic, viral infection. That could drop count which should come back up again. It may be that a quick boost of pred will bring it back up, it may come back up on its own. From a personal point of view stress always knocks my count off too. Romiplostim made my counts swing all over the place which is why I changed to Eltrombopag. Slower to work but more stability.
It could be that you are a slow Rituximab responder.

im being weened off of Prednisone. Down to 5mg a day for 7 days and then off of it. The weight i have gained in just 5 weeks lol my body is wrecked. It wasnt really working for me to begin with. As far as stress, I had zero for the past week because my count was 260 lase Wednesday. I was on top of the world ready to go back to work. Im not going to be cleared to do so now until I am able to hold and maintain over 50. Good thing i have 10 months of leave remaining.


I dont mean to come off as whining because many if not most in here have been through this much worse and for much longer. Im just a newbie learning the ropes and having to adjust to the new, forever, reality.

Who clears you for work? When I was first diagnosed. My GP said I could not go back to work with a count under 50 where as my haemo said 30. I fact she relented on that and I went back to work with a count of 25.

my hematologist. They have to sign paperwork in order to clear me to go back. Perhaps the nature of my job where Im very physically active, lots of having to run, jump, potential dog bites, 6 hours of driving on roads and always a chance of being in an accident as a rural mail carrier. I dont know

considering my bodies response or lack of response so far the possibility of spleen removal was mentioned as a possible consideration. Not yet but potentially

Wow
How do you feel?
I got a bit wiped out with both of those drugs individually.

yeah, I just woke up about an hour ago lol I have noticed that the day after rituximab infusion I am wiped out as well but the benydril they give me for the treatment is probably part of the reason as well. It takes me a couple days to get over. Thankfully I just had the fourth and final treatment. Now if only it would kick in and do what its supposed to do lol

Too soon to consider Splenectomy. I know this link looks broken but it works ...here are the latest guidelines ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

thats what I thought. I had read they prefer to wait 6 months to a year before they make that call. But what is the alternative if nothing else is working to keep my levels above 30? Very confusing for someone who is not used to going to the Dr or being treated.

gozorakgogo
The article onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2141.2004.04889.x examines Rituximab for ITP and states "Twenty‐nine of the 31 responders (94%) had a platelet increase to >50 within 8 weeks of the initial infusion. The median time to achieve this count was 3·5 weeks (range 1–19 weeks)" so you must not give up hope yet.
If Rituximab does not work there are several more medical options you can try before you do anything so drastic as considering having your spleen
removed. There absolutely no guarantee a splenectomy will work & it is not without risks which become higher the older one is.

Thank you. From what I read here and from other sources I know that to be the case. That its not going to be an overnight everything back to normal. Perhaps that is why the estimated get back to normal date that the Dr gave me of Oct 8 was more realistic than my "Ill be fine and good to go" in a matter of a few weeks. Lol Im restless and taking so much time off from work while not being able to enjoy or rest isnt the ideal. Cant complain actually. I have a ton of sick leave and I have insurance. The cost of just the Rituximab and Nplate along with the care and procedures that go along with yesterday alone was $40,000. Thats $160,000 just in Rituximab and Nplate not including everything else over the last month and a half.

I cant say that I am worried or afraid or concerned about ITP. The only time I felt concern was as I was driving myself to the ER after been having been told by the DR in a surprise phone call to get to the ER immediately. I was at work with an hour left to go on my mail route. I finished the route anyway and got a shower and fed the cat and made a few phone calls first. All I knew was that I felt physically off, weak and fatigued in a way that made me feel that it was something serious, as in serious serious, the bruising which was unlike any bruising I had ever had, being told to go to the ER and the way in which I was dealt with, as if I was in a serious state, and the CAT scan, and the 6 days and nights in the hospital, and the not being able to leave the bed, which had an alarm on it to alert the nurses when/if I got out of bed along with a FALL RISK yellow band around my wrist. Then there was the second time in the hospital only 5 days after getting out from that first visit. I have been told that anytime under a level 10 I have to go to the ER to be admitted into hospital. So obviously that is very disruptive to ones schedule and being able to plan anything or do anything so long as my levels are hovering around that mark. I take an overnight bag with me everytime i go for a blood test because one never knows..

So the sense I am getting here is that ITP is a major nuisance and can be disruptive but not really that serious considering that no one really dies from it or at least its so rare that its not a real concern. Is it just a matter of learning to deal with it and how crappy it makes you feel? These treatments are fairly significant in what they do to the body. Destroys body image, causes insomnia, causes one to gain weight, wrecks your immune system, runs up massive bills even with insurance. Is it even worth it and necessary in the end? Is it an overreaction by Dr's? Why not just stop going and worrying about and running up bills if theres a chance that your not really going to be guaranteed a positive result and even with a positive result isnt the risks from the treatments potentially more dangerous that ITP? Its too late in the game for me anyway as far as that goes since ive gotten the 4 retuximab treatments so guess ill be living and dealing with whatever that brings. I feel guilty even being out of work for this long as I have never missed more than 3 days in a row. Im at almost 6 weeks in a row and now it will probably be much longer than I had anticipated.

ITP is a nuisance but should not rule your life. I have never been to ER in the 6 years I've had ITP. I was off sick initially because my GP knew noting about ITP and panicked at my low count. After returning to work I never had a day off sick because of ITP working on the NHS front line with a counts as low as 2.
When I went for a holiday in Australia in 2017 I asked my haemo what was a safe count to fly. She said anything above 0.
If my count drops I just take a good dollop of Pred and get my count done as soon as possible.
Do you know much Pred were you given initially? You can take 2mg/kg of body weight to get your count up.

gozorakgogo I drove myself to the ED also, in the dark & a doozie of a thunder storm. This was 1989 and my count was 11k & dropping. I spent a couple days in the hospital, had a BMB and was put on prednisone - a few weeks later we moved to Tokyo.

One thing you need to remember is that the decision is yours - it is your body! I was given the choice of prednisone or splenectomy, the 2 treatments back then - well when I asked the hematologist if a splenectomy would cure me the answer was no so I said I'll take prednisone. I was not going to remove a perfectly good spleen if it wasn't going to be the cure! My ex-brother-in-law, a surgeon, said I needed to have my spleen removed - the head of hematology at the teaching hospital here told me back in 1990 "you WILL have your spleen removed", well I still have it.

There used to be about 10+ of us w/ITP who would get together monthly or every other month - one lady had a count of around 5,000 all the time, she went to England & found out her spleen was where platelets were being destroyed, came back here and had a splenectomy which didn't work. There was a man who kept a count near 5k - he and his wife adopted a daughter, their other children were grown. Neither could get their count up to where we think we would want it - neither of them spent days in the hospital, neither stopped living because of ITP.

When my count hit the gutter in 2002 I think it was I refused prednisone so I wouldn't look like the Pillsbury Dough Boy for our son's wedding - I had 1 IV of WinRho which brought count to a decent level. So for me it was prednsione & then WinRho which did the trick - not normal range counts but decent counts. I'm a stubborn person, I'm from Missouri so things need to be proven to me

As mrsb said, ITP is a nuisance - some of us have it better than others but we all still live our lives keep moving on.

You sound like you are doing your homework and reading and checking things out. Hope the rituxan works for you and brings you decent counts for a long time to come!!

im confused by it all. I suppose the lesson is that Dr's and specialists dont really know what they are dealing with or talking about. This is why I never go to the DR to begin with. Hopefully whatever my count is this coming week I can convince the DR to sign my release

Specialists know about their particular field of expertise where as GPs know a bit about a lot of things especially the correct way to taper steroids for example.

this is where I am confused because it has been my Hematologist and all the other Hematologists in the Hospital who have stated that I shouldnt think about getting back to "normal" life until I am plus 30, ideally 50 levels.

Ask them how many of them have got/had ITP. You know your body and your limitations better than anyone else . Unless there are laws in the USA about not working with low platelets I would say go back to work when you feel ready. Have you got understanding employers who will let you ease yourself back in?
I was very lucky and well supported on my return to work. I phased in gradually over about 6 weeks with support from Occupational Health.

gozorakgogo - I have a fantastic hematologist [well, as of Sept 1 I'll be starting with a new one since mine has taken a position where he will be head of oncology] - I trust him more than anything, the one I had before him [died suddenly] was also fantastic. Both knew what they were doing and why and what was best for me - and believe me I have "fired" a few doctors because I didn't like what they told me!! All doctors cannot be lumped into a pile - there are wonderful ones out there!

But to tell you that you can't live a normal life until your count reaches 30k is unreal! What about those people I mentioned above -I was never told I couldn't do this or that, and had I been told I couldn't move overseas I would have ignored them. I did quit skiing after diagnosis, not because of ITP but because it was too expensive in Japan and also I liked my bones as God gave them to me not broken as they could have been since I wasn't the best skier.

I actually do respect Dr's and specialists and all of the nurses and assistants. Having never been in hospital a single night let alone 10 days and nights they were all so wonderful and helpful and kind. Their work load and the pressures of their job in this day and age are immense. I have nothing but respect.

I think I may have inadvertently put words into my Hematologists mouth. He, nor anyone else for that matter, stated that I couldnt have a normal life until I was at or above a level of 30. What he did say is that since my levels have not yet stabilized, having been at 260 last week and then now back down to 14, that he would like for me to wait a bit longer than I was anticipating before I go back to work. When I got that good reading last week I was like Here we go, its over. Clearly that was not the case. I work so many hours a week that basically that when I say getting back to normal and my life that is what I am referring to. Im still feeling not quite as well as I normally do and am hoping its as much the treatments I have been receiving as of late. My last Rituximab treatment was last wed so hopefully as the days go on I will feel less fatigued than I am at the moment. As I have stated I think in the past, I have never missed more than 3 consecutive days because of illness from work ever and here I am in week 6. When I read how many of you have gone on with life with levels in single digits I begin to doubt that any of this was necessary and that maybe an overreaction and I should just get over it and get on with it. In other words Im doubting things My prides and sense of responsibility vs what my Hematologist is recommending. A conundrum lol

I think our message is that most of us are quite able to go on with our normal lives despite having periodic low counts. I for one think your hema is being overly cautious. I would certainly go to a lesser-risk job no matter my count, unless I was actively bleeding. In all my time in this forum, I haven't even seen more than five people who had crippling fatigue with ITP. Very low counts can indeed cause it, but anything around 50 and above shouldn't. That number can vary, everyone's different. But there isn't any overwhelming reason why you shouldn't return to work when YOU feel like you can.

Make sure there isn't another reason for your fatigue. Lots of things can be responsible. If you were fatigued with a count of 260, check out other causes; it's not very likely to be your ITP. ITP by itself doesn't usually have symptoms; it's only very low counts that cause "bleeding signs" of bruising, petechiae, oozing gums and/or nose, etc... and of course fatigue for some. No one gets all the signs/symptoms, and a few will have none at all. They only discover a low count during a random CBC for something else. Out of all the autoimmune diseases a person could have, I feel pretty lucky to have this one. Yes, you heard right.
Now... The treatments are a whole other story. That's what we have to be careful about.

I hope the Rituxan works well for you.
Take care of yourself, please. We need all the able-bodied mail carriers we can find in the weeks ahead! I consider you a national treasure, for real.

latest result from yesterdays cbc is that my platelet level is back up to 220. From 260 to 12 back up to 220 in a 2 week period. I got the clearance to go back to work this Tuesday...YAY me. Now to get over this unbelievable fatigue which I am guessing is from the Prednisone withdrawl. I stopped taking the 5 mg daily 2 days early. That was 3 days ago. I have 5 days to ride this out and get back to semi normal by tuesday. But feeling better overall

It may be worth having your cortisol levels checked to make sure your adrenals have recovered from the Pred.

that will eventually clear up on its own though right? My next mission. my primary mission will be to rid myself of the 15 lbs I have literally gained this past month and a half. A good deal is not doubt water but I have a layer of belly fat on my midsection now that will not do. So I will have something more important on my mind for a few months than ITP lol