Newly diagnosed after having spent 10 of the last 16 days in the hospital

So, here I am. A new member of a support group for a condition I did not know even existed a month ago. Brief history. I am 54. I have been relatively healthy all of my life. I can recall only ever spending a single night in a hospital as a child when my tonsils were removed. I rarely go to the Dr because I have never really needed to. The only prescriptions I have had over the past 25 years would have been for pain killers after a couple of dental procedures and I never used those. I am a rural mail carrier. Long days, requiring lots of energy all day. I was full of energy all of the time until a few years ago when I began feeling a bit more fatigued than usual and every day. Accompanied by sore legs and hips. I assumed that was part of getting older.

about 4 weeks ago I and my co workers began noticing bruising on my arms. I had no idea and figured they were from how I do my job, which often involves me throwing my body around. The bruises got worse over a 2 week period and especially on my legs and upper torso. This was accompanied by extreme fatigue. I decided to go to the DR to see what was up. Went in on a Wed morning, July 8 2020. They performed a blood test, looked at the bruises, told me they would have the results the following Monday and made an appointment for me to come in then. Since the Dr was discussing things I needed in the future, colonoscopy, immunizations I figured it must have been some kind of vitamin deficit and wasnt worried. Later that afternoon with an hour remaining on my mail route I get a call from the DR saying that my blood test was complete and that I needed to immediately go to the emergency room because my blood platelets which should have been around 140 was in fact at 2. I had no idea what any of that meant other than I had to go immediately to the emergency room. I finished my route, went home got a quick shower, made a few calls to have my cat taken care of and headed off to the emergency room for what I thought would be a one night affair. I ended up being there for 6 days. I received Prednisone the first 4 days and my count got up to around 15. Then I received 2 days of IVIG( I had a really bad post IVIG reaction 2 days after the final procedure). After that my levels got up to 46. They released me and had me come in to test the friday after I was released(level down to 29 and I was prescriped 60 mg Prednisone a day) and the following Monday where I was devastated to learn that my level was back down to 2 so back in the Hospital for 4 days. They started me off with 3 platelet transfusions but my immune system killed the platelets as soon as they were in my body. The decision was made to go to the next level with the first treatment of Rituximab along with 40 mg of Prednisone. A day after the Rituximab my level was up to 15 and the next day it was down to 12 but the Dr said that my levels should be leveling upward overall so I was released from the hospital today and am to go back in 3 days for my next CBC and another meeting with the hematologist. I am certainly hoping that my levels will continue to trend up with the Rituximab as I understand that it takes a week or so to kick in along with the 3 weekly follow on treatments. I had zero negative effects with the Rituximab and none so far with Prednisone and yes I understand it is early yet. So I am sitting here thinking just out of the hospital will my levels slowly rise until the next blood test on monday or will I find myself plummeted again and back into the hospital. This is not a fun way to spend the weekend. I wasnt able to shield my family and friends and coworkers from any of this because of that original go to the emergency room immediately order and I had to make call to work and to family and friend to be able to take care of things that I did not have any time to plan for. SO now they all know and are all worried. Me? Whatever happens happens, Ive lived a blessed life. I am guessing that because my levels were so low(and Im assuming they had been low for weeks and I had been working 12 hour days the whole time) and not responding the decision to escalate to Rituximab was a no brainer. As low as my count was I never experienced nose bleeds, or bloody urine or bloody stools. Just the ugly bruising and purple dots all over my legs and one black sore on my tongue which vanished as quickly as it appeared. Needless to say, everything has been turned upside down and the more I learn about his condition the less hopeful I am that things will ever be the same again. Joe Walsh sang it best. "Pow..right between the eyes...oh how Nature loves its little surprises" Surprise indeed. Guess I have a lot to learn. This weekend I dont plan on thinking about it too much. Not going to stress over whether my level will be back down to 2 and end up in the hospital again on monday. I will say that the food at Riverside General was much better than I would ever have anticipated. But Id rather not have to dine there again anytime soon

Welcome. Glad you are out of the hospital. It sounds like you have good care and doctors are acting quickly. Bruises and petechiae (red/purple dots) are not fun and can be scary, but it is really good you did not have any internal or wet bleeding (other than the sore on your tongue). Hopefully it stays that way for you. The fatigue is debilitating and can be really discouraging. The good news is, when your counts are better it will go away.

I am assuming you saw the hospital's hematologist, and do not yet have one that you will see regularly. Bring a list of questions when you have an appt. with one and remember, you can always switch to another if needed.

ITP treatment has changed a lot since I was first diagnosed. There are a lot more options available that make it fairly easy to have good quality of life despite ITP. I am surprised they started you with Rituximab so soon, but perhaps that's the protocol these days. If the Rituximab doesn't work there are many other options, so don't lose hope. ITP is not a death sentence. You can get back to the life you had.

i was in the hospital having to learn and absorb as much about this condition as possible as quickly as possible on my iphone lol.. the second stay in hospital i was more prepared and had my iPad so I didnt really know enough to ask great questions of the hematologists that came by to check on me and give their recommendations about what course of action to take. I certainly was in no position to question them. I do have a hematologist and will meet with him for the first time monday and also have my next CBC. I am assembling all kinds of questions in my little notebook and I will be able to have a real conversation with my Dr Monday.


I can only guess that maybe they went to Rituximab so soon because neither Prednisone or IVIG did anything to keep me above 10? and I was down to 2 for multiple days at the beginning of each of the two hospital stays. Perhaps they were doing what they thought had to be done to get the levels up over the bad zone? Also the 3 platelet transfusions they started when I went to the ER on the second visit were total failures because my body destroyed them as soon as they were in my system

Im guessing I have been running low for some time because the fatigue has been there for over a year but i learned to deal with and manage it...i just dont like the stress of knowing or thinking that a level 1 or 2 reading may or may not be serious and when they say I need to be in hospital when under 10 that sounds serious but im not sure...very perplexing

Happy to have this forum
Thank you for your reply

Welcome
I concur with b2h’s comments.
Rituximab can take a while to kick in, so don’t be too disheartened if you do not see an immediate response.
I am surprised at it being used this soon in light of the current Covid 19 global pandemic. I hope you have been advised to shield. Your prednisolone dose is high enough to increase your risk without adding mab therapy into the equation.

Read up as much as you can. Be empowered, question everything, ask the medics for their evidence base. If you are not happy with responses look for a new Haemo. Doctors often worry more about counts than symptoms and do not always know best. You know your own body.

The odd looking link below will take you to the latest, extremely well referenced, international guidelines :- note the section on length of steroid therapy for the newly diagnosed. You are taking a high dose make sure you are tapered off it not just stopped abruptly.
ashpublications.org/bloodadvances/article/3/23/3829/429213/American-Society-of-Hematology-2019-guidelines-for .

thank you so much for the link

gozorakgogo wrote:
...
I received Prednisone the first 4 days and my count got up to around 15. Then I received 2 days of IVIG( I had a really bad post IVIG reaction 2 days after the final procedure). After that my levels got up to 46. They released me and had me come in to test the friday after I was released(level down to 29 and I was prescriped 60 mg Prednisone a day) and the following Monday where I was devastated to learn that my level was back down to 2 so back in the Hospital for 4 days....

Ok. Looks to me like no real steroid response or IVIG response. A 15 count with steroids alone and then 46 for a few days after adding IVIG. While this can seem like hitting a ITP treatment brick wall, not to worry. A number of folks have arrived in this forum with the same sort of treatment responses - and including a sub 5 baseline count.
Read through this thread and see what you think.
"No Response to IVIG, ACK !"
pdsa.org/discussion-group/7-treatment-general/30169-no-response-to-ivig-ack.html#64535

... They started me off with 3 platelet transfusions but my immune system killed the platelets as soon as they were in my body. The decision was made to go to the next level with the first treatment of Rituximab along with 40 mg of Prednisone...

IMHO, adding Pred to Rituxan was a good idea in your case. On the other hand. If someone is a responder to Pred then adding it to Rituxan is probably not a good idea. Normally a steroid responder will almost always respond to Rituxan (alone) and can often have a strong reaction to it during infusion.

Now that you've had more time to think about it, any idea what triggered ITP, the fatigue which started months/years ago? A stressful event, bad flu, or something like that?

I have no idea. I quickly learned that the potential causes or triggers for ITP are tested for in the diagnosis stage. Considering my past and past lifestyle the fact that I never ended up with HIV or any Hepatitis is in itself a miracle but I am negative on both. Havent consumed alcohol or any drug outside of marijuana for over 10 years. No prolonged exposure to chemicals that I know of. I rarely am sick, before this. I am sure that I have had the flu before but It has been decades since I had a sickness bad enough to keep me out of work for instance. No chemo treatments either. As far as stress, I dont know that my stress is any more than anyone elses stress levels. I have my own strategies for dealing with stress and depression and the like that work for me. I have been working incredibly long hours the last 6 months or so and my days leave no room for breaks or time outs. Its go go go from start to finish. I do know that I have not been getting enough sleep. There could potentially be a link to do diet. Mine is horrible and always has been. Ive always been thin and basic things like cholesterol levels, BP etc etc have always been good. But perhaps a cumulative effect of decades of processed food items and not enough real food as in veggies and stuff? I know that I am always on the verge of dehydration because my beverage consumption involves way too many energy drinks. There have been many days that i drink nothing but energy drinks. That may very well have an effect. At no point have any of the questions I have been asked by specialists or physicians included things like diet.

I am intelligent enough to know and understand that ones diet can have and does have an incredible impact on ones general health. Especially in the long run. Because I am a bit shallow when it comes to myself I have only concerned myself with the impact of diet on weight and appearance so have done what I have had to do to maintain a body that fit my self image. That self image has been wrecked in the past month because everything involved in this ordeal, the fear, the uncertainty, the prednisone, the confusion, the stress eating...it has all basically wrecked my appearance. Im so shallow lol. I am going to have to seriously consider implementing a total change in diet from here on out. I personally believe that the majority of long term health afflictions that we experience as we become older could be, if not avoided, at least mitigated by a proper diet from early on in life. We really do have the power to impact our future selves and avoid many serious health and medical conditions by eating well and limiting that which we do eat from an early age. We are human beings however and we are driven as much by emotion as instinct and intellect. Food is abundant, cheap, too easy to come by, with no real physical effort required to obtain and consume(unlike our species in earlier times and the rest of the animal kingdom).

I am pontificating sorry about that lol. There is much for me to think about because I am still not sure if this condition is as serious as it I fear that it is. I do know that I do not feel myself at all physically and still after 3 weeks would not be able to do my job because of the weakness and fatigue I am still experiencing. How much of that is ITP related and how much is treatment related I am not sure. I am hoping that after next week and the final rituximab treatment I will be up to going back in to work instead of staying out until Oct 5 as was mentioned as a possibility by the Hematologist. I am experiencing stress now because being out of work so long. The idea of not working just because I dont feel well has never sat well with me. I apply this to myself not to anyone else. As a result I feel guilt for not being at work doing my part instead of convalescing at home for so long. I think sometimes I should just go in, deal with it and stop worrying about it, however the level of fatigue and weakness I feel at the moment for this length of time is unlike anything ive ever experienced before. Again, hoping this goes away soon, my levels get to where they need to be so I no longer feel this way and I can go back safely without the fear of another bottoming out event that causes another life/work disruption hospital stay. I would so take a platelet level 50 and be happy about it if thats all it took.

One question though. Is it possible or probable that maybe I have had lower than "normal" platelet levels for some time and then the bottom just happened to fall out causing the onset of the massive bruising and extreme fatigue over a 3 week period of time that led me to the hospital and diagnosis of TIP or is this something that would have suddenly plummeted out of normal levels so quickly. In the past although I havent gone to the dr regularly I have gone every couple of years just to have blood work done to check things like cholesterol and such. The last time I went was about 2 years ago. I guess low platelet levels would have shown up then with that blood test?

go zorko go go, if one goes through each item in a typical daily multi-vitamin, one should find that a large number of ingredients are for your immune system. Foods have protein, carbs, and fats but not necessarily much else. It seems to me that if one wants to avoid a deficiency and keep one's immune system in top condition, a multi vitamin is a simple way to do that. LOL, can you find an energy drink with a multi vitamin in there with it?

In the thread I referenced earlier vitamin B9 (and excessive exercise) is scrutinized. Recently, with input from 'nb9094', vitamin B12 might be an issue as well.

I would mention vitamin D to you as well but I expect your level is normal/high. I don't think there is any doubt that outdoor exercise is a big feature of your daily life.

sometimes the most complex of problems requires the simplest of solutions. I have never taken multi vitamins before but I shall begin to do so tomorrow after running to the store.

I would mention vitamin D to you as well but I expect your level is normal/high states Hal.
I disagree. My levels were far too low which amazed me as I spend as much time outdoors as possible and eat plenty of Vit D high foods. After a bit of research I discovered there is a wealth of information linking low Vit D and autoimmune diseases. Whether low Vit D is responsible for autoimmune conditions or caused by them is the subject of many papers. Worth getting your levels tested.

Every time someone posts on the newly diagnosed forum, I remember a scene from the Green Mile movie in which the black guy told the wardens that "I wished we had met somewhere else".
Welcome gozorakgogo. I know first few days/months can be frustrating. I think it's good that you have received rituximab so early. I received it relatively early too.
Anyway, don't worry! Many of us have recovered and forgot most things about platelets and occasionally just check here.
I remember in those miserable days that I was diagnosed, I went on a vacation and also started reading articles.
At that time, I found this article very helpful and promising. It's the most cited article in the ITP world.
pubmed.ncbi.nlm.nih.gov/11313240/
Good luck.

Far better to get your vitamins and minerals from a sensible diet than from tablets, unless you are shown to be deficient. Tablets don't make you healthy. Vitamin D may be the exception to that as we don't get much from food, need the sunshine for that one.

The problem with relying on sunshine for vitamin D is that one is supposed to apply a good sunscreen to exposed parts of the body before going outside and also wear a hat as there is basal cell carcinoma, squamous cell carcinoma and melanoma to be had. Unfortunately I know from experience. So no, if one is doing as they should they probably aren't getting what vitamin D is needed from sunshine.

I was low in D and had to take huge doses of D3 until my level had increased to where the doctor wanted it - since then I take a higher dose than required and to be honest with you I feel better since this was discovered & treated.

Over here in the UK our criteria for Vitamin D3 levels are.... Severe deficiency: <15 nmol/L, Deficiency: 15 to 25 nmol/L, Insufficiency: 25 to 50 nmol/L, Adequate: >50 nmol/L. My levels were 36 when first taken. My haemo put me on a high dose course of D3, sent me for a Dexa scan which showed osteoporosis and referred me to a Metabolic Bone consultant. Lovely chap said if he had his way 80nmol/L would be the lowest level of 'adequate' and prescribed me a daily supplement of 1600 units of D3. This maintained my levels in the high 60s so he increased it to 2400 units a day. They were last checked in May and were 92. In the US I believe levels are measured in ng/ml so my current level would equate to about 30ng/ml.
I agree with Mel. I have generally felt much better since my D3 levels have increased.

You are right about the ng/mL mrsb - this was my result March 2019 - going to ask for another test when I next talk with my doctor.
I take 2000 units daily of D3

Component - VITAMIN D, 25-HYDROXY
Your value - 34 ng/mL
Standard range - 20 - 96 ng/mL

I am sorry to hear about your struggle and I hope you feel better soon.

From your medical history that you typed above I understand that you never really seen doctors for regular blood check ups. Correct me if I misunderstood.
If my assumption is correct then I think you might have always had mild ITP but you never knew about it. Many people with mild ITP rarely develop any symptoms and usually discover it through random blood check ups.

Regardless of my predictions, I would like to confirm that Vit D deficiency levels definitely correlated with the severity of my condition so it’s worth checking. Once I started supplementing my platelet count improved a lot.

Good luck and keep us updated