I am having crying jags and emotional ups and downs after a diagnosis. I am 69 and was diagnosed 4 days ago. But after 2 1/2 days in the hospital my count went from 4000 to 60000. Put on dexamethasone 40mg/day. I didn't see this steroid in other posts. I did have a platelet transfusion and some other IVs. I am very scared but the red and white cells were normal and so was my spleen, liver & kidneys fine. No bleeding but blood blisters in mouth (disappeared after 2 days treatment) and red dots and unexplained bruising took me to doctor. Just from reading literature and what I went through 4 years post car accident, I am wondering if taking the NSAIDS with my pain killers did this to me. I took for a long time but never more than the daily amount I should. It is very hard to accept . They did a bone marrow biopsy to cover all bases but I am still very nervous since I haven't heard yet. Will get my blood numbers again tomorrow to see if anything went up
Any sharing or encouragement would be appreciated. Thank you
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ShirleyJK
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Dexamethasone is a standard ITP treatment so do not be worried about that. It is just like a high dosage version of Prednisone (about 4 times as strong) and many of us here have had it.
It seems odd though that they would give it to you so early in your treatment as usually they use prednisone first but don't read too much into it.
Do not try and understand how you developed ITP as no one knows - it is just one of those things and hopefully your timeframe to get it under control will not be too long but don't be surprised if it takes many, many months.
Also do not be surprised or discouraged if your counts drop down again after the initial rise as this often happens (spoken from experience) and then you move onto the other treatment options if necessary.
They often do a bone marrow test (I have had 2) as part of the diagnosis to eliminate other factors so also do not be too concerned especially as your have said that your white and red blood cells were normal.
Please keep us informed on your progress and discuss any concerns that you have and all of us here have been through it before.
Thank you so much for this. It is very helpful. I have been on an emotional roller coaster. I never realized that so many people have this - it amazed me. I will definitely keep in touch. Thanks again, Robert.
Wise words from Robert. I am 61 and also suffer from ITP. Don't be worried about the NSAIDs you took. Although you will probably be advised to avoid them now they will not have caused the ITP.
I also had a bone marrow test as a precaution and everything was normal, so don't read too much into that. As Robert said you will probably see your platelets fall back a bit. That is common while they establish the best treatment for you.
I'm guessing you are in the US as you have given your levels in thousands. In the UK we would say 4 rather than 4000 so don't be surprised by the low numbers you see !
There are many different treatments available. My own experience was that it took 2 years to find the best treatment for me but now my levels are very good and I lead a completely normal life with just an occasional hospital visit for a check-up.
So don't despair and do continue to use this forum as it's a great resource when you are feeling worried or unsure. Good luck.
Hi - Yes they did tell me to avoid the NSAIDS now. I'm in Colorado. All my other tests came back normal and I was at 216,000 yesterday so I was very happy but having weekly blood tests for awhile kind of throws me for a loop though because I will keep thinking about it. They took me off the steroids so I'm not on anything - I felt terrible - but was only on them 3 days at home. Doctor said that there are other treatments available. Happy to hear you can lead a normal life....I've been very depressed as I have never been on any drugs for any diseases - except for a car accident 4 years ago that put my back in pain. I am out of pain but dealing with stopping all pain meds. I wish they were more helpful in what amounts to taper off. Again, good luck to you and thanks so much for replying.
Hi Shirley “Snap” I was 69 when I was diagnosed my reading was a bit higher than yours at 12. I had been alerted that something was wrong when bruising appeared in unusual places on my body and I was quickly admitted to hospital. Long story short 3 years on I have 3 weekly blood tests I self administer Romiplostin injections and manage to maintain decent platelet levels the lowest being 60/70. I experience no side effects I am just so relieved I have been diagnosed with this autoimmune disease and receiving appropriate treatment. Shirley try not to worry there are quite a few of us in the same boat as you living “healthy” happy lives lots of love.
Oh my, your attitude seems so good. I thank you for the encouragement. I got good news yesterday. My count went to 261,000 after the hospital stay and 3 days of high dose steroids. But....blood tests will continue. Have any doctors told you you could've gotten a virus you didn't know about that caused this? I need to stop trying to find reasons - they just have theories. Unfortunately, I am now suffering from withdrawal from a pain med I took when in a car accident 4 years ago. They did an ablation that worked and my pain went away but they aren't being very helpful about getting off the extended release oxy (not large dose) I was on for several months. I just don't need this stress right now. Again, thank you for helping my worries.
Hi Shirley there does seem to be a school of thought that a virus may be responsible for triggering the auto-immune illness. For myself I think there are a couple of factors or more ! at the bottom of it. I had a very stressful career and an extremely stressful marriage for 22 years I also think inherited genes may play a part and also age. As we grow older our immune systems weaken. I have other auto immune illnesses the most important one PBC that affects my liver that also is being treated and monitored. On a positive note I remarried 22 years ago to a wonderful man who gives me a very positive attitude to life as well as looking after me. I am sorry to hear about your car accident that must have been awful thank goodness you survived concentrate on getting off your painkillers if you feel you no longer need them. ITP can be controlled its just finding the medication that agrees with you and like me thank God you have been diagnosed it could be a whole lot worse if we hadn't been. Take care.
Yes, not knowing what exactly is wrong or getting treated would be the worst! So happy to hear you are with a wonderful man now. Support from those who love you is critically important. I am going to try and be positive and work on the tapering off...it's miserable because I was not thinking and did one night of cold turkey. Not good.
Hi Shirleyjk, I was diagnosed in early 1990’s but refused standered treatment of the day ( steroids) preferring to wait until AMGEN developed a platelet stimulating factor (Nplate), which was approved in 2008. Unfortunately I was so sick by 2009 I was forced to seek treatment.
I was started on five days of Dexamethasone followed by IVIG and Rituxan all with results. Because I was so I’ll I had not kept up with scientific literature and was unaware that Nplate had been developed an approved the previous year, I almost waited to long. I started Nplate in 2010 with excellent results (platelets between 30 and 80K). The only draw back is weekly blood draws and injections, small price to pay to maintain a fairly active life style. The fluctuation in my is dependent on my physical and emotional health. Minor illness (colds) or uncontrolled pain will negatively effect your immune system and drop your counts so please treat your pain, no more “cold turkey “, just avoid non steroidals ( Motrin, Advil, and aspirin), Tramadol, Tylenol and an occasional Norco are the only drugs I can use.
Welcome to our group and check out the educational section on this site, be well
Thank you Georgia. I was confused because I was hearing different health professionals say that Tylenol was an NSAID and I need something occasionally for pain now but am afraid to take anything! It is distressing to hear even minor illnesses will have negative effect. But if you can have a fairly active lifestyle it seems you are doing the best you can! The best to you and thanks again.
Hi Shirley, Tylenol is acetaminophen an analgesic that can treat minor aches and pains and reduce fever...NOT an NSAID. Tylenol like all drugs have side effects, it can cause liver damage if you take more than 4000mg a day, because many other over the counter contain Tylenol that maximum daily dose has been decreased to 3000mg. To avoid overdose please read the ingredients cold medications. Tylenol is a safe drug for those os us with ITP so please use it as needed because uncontrolled pain has has negative effects on our bodies. For example: increased metabolic rate/ oxygen consumption, hypertension, vasoconstriction, increased heart rate, shallow breathing, nausea/vomiting, decreased cellular immunity, decreased decreased activity, increased anxiety, sleeplessness, helplessness, anger and depression!
Non-steroidal/antiinflammatory (NSAID’s)
Advil, Motrin, aspirin, Aleve, Anaprox DS, Naprosynand Celebrex are NSAID’s and will interfere with platelet function and will cause bleeding....DO NOT use. I have extensive arthritis and must use Tramadol with Tylenol 3 times a day, I limit the Tylenol to 1500 mg per day.
Since your new to ITP let me tell you how I feel when my platelets less than 15K: I have increased fatigue, increased bruising which is bleeding, increased irritability (PMS on steroids) and depression and I am not alone. Unfortunately we can not take antidepressants as they interfere with platelet function; we are left with meditation and CBT ( cognitive behavioral therapy). Six months of CBT is as effective as antidepressants and is covered by insurance.
Feel free to contact any time if you have additional questions, be well Georgia
Thank you. CBT sounds like something I need to try. My body just seems to hate all drugs. I have only recently been taking about 2000 mg of Tylenol a day recently and will stop soon. My back is just sore from the bone marrow biopsy - I heard if you have fibrous bone it can take longer to stop aching? I did not know about the antidepressant interfering with platelet function. I was taking a low dose of valium (2mg) because of a car accident pain I could not get rid of for 4 years but the last treatment they did worked so I have not been taking it . Thanks for so much information.
Hi Shirley I have been on the roller coaster ride for 9 years (9 long years) Ive been in hospital with 1,000 platelets and heavy menstrual bleeding, I’ve had ivig, nplate, rituxan, prednisone almost every day, so take each day as it comes, itp is idiopathic which means unknown cause and limited treatment like the ones above, ultimately I ended up having to remove my spleen, have battle scars to prove it, now my platelet count is higher, let’s hope it stays that way! Keep your chin up hopefully your journey won’t be as bad as mine but I hope things get better for you! Relax w erything would be fine your under good care!
I too have been diagnosed for 9 years. Had all the same ie. ivig (almost killed me from hemolyzing), rituxan and prednisone. Also bone marrow biopsy and scans of my liver and spleen. All normal. They put me on a drug called Promacta and my levels vary between 50k and 80k. The promacta causes a lot of muscle / bone pain so I am on Utram for pain daily. Splenectomy is next but I am a little apprehensive. If there is a side effect..I am the guy and reading on the mortality rates with ITP it shows "complications from splenectomy" close to the top. How long ago did you have your spleen removed? What levels are you maintaining? My l;owest point was 12k.
So sorry you are going through this.. it sounds much worse than mine. My doctor said it's called idiopathic because they are "idiots" and don't know why people get it. She knew I needed a smile 9 years is a long time but it also sounds like you are getting the care you need. I wish you the best.
I've had it for 23 years, triggered by pregnancy. I don't have meds, and my count fluctuates between 19k and 60k, normally settling at about 38k.
I live in Belgium, and they don't treat there until your count is <10k, or you are bleeding or bruising heavily. In the UK, I think it's about 30k.
I forget about it most of the time. I get tired and know that I have to pace myself, and not drink much alcohol, but I lead a normal life. There are worse things to have!!!
Scaryteacher - it's taken me a year but I'm with you - I know I need to slow when I spot the red spots. I find the mental shift harder now than any physical shift. I set myself a limit, with the agreement of my haematologist, that I would not take treatment unless under 10 and even then only if bleeding (or oozing, as she says). I have only got close twice since diagnosis 14 months ago. Then it comes down to mental resilience and holding my nerve a little. As well as very much resting about 80%of the time. But my count only seems to stay below 30 for around 4/14 months of the last year.
So - I've learned it is a long term illness that comes and goes; that I need to write down my game plan for because I forget until next time it comes; that messes with my mind as well as my body; that no one else really understands; but that is very far from the wide spectrum of dangerous most of the time.
Saying that, I only had a week off ill from work (I run a small organisation); and am mother to two small children; I have holidayed and travelled abroad; I have had a wonderful year too. It has not stopped me living, loving, laughing. There are large chunks of time I now forget about it.
It is an illness of risk, and mostly the doctors can mitigate even the riskiest situation (in the U.K.; I am very lucky to have one of the best haemotogists and GPs).
So - Focus on what you can do each day, rather than what you cannot. Write one thing down each day that you enjoyed/ are grateful for. Practice gratitude. Daily. Rest in it. Breathe it in. Give yourself space from the anxiety.
Sorry to sound preachy. There is research to show it works for low mood.
I wish you every ounce of contentedness and joy when your time is right.
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