Excellent Advice for newly diagnosed

Welcome to you both.

Hello everyone, it is such a relief to know there is this forum of people with the same condition that I have, thank you. I was diagnosed with ITP 3 weeks ago after I noticed a lot of unexplained bruising, petechia and ecchymoses and my platelets were at 5. I was started on 60 mg of prednisone, platelets rose to 50, then 87, then dropped to 27 within 2 weeks. I was given an IVIG infusion over 1 day (was supposed to be over 2) because I was leaving town the next day and was short on time. 4 days later I am at 40. I was a bit disappointed with that result. I go back next week to have my platelets checked, I have stopped drinking wine (only drank a few glasses a week at dinner) to see if any effect. Anyone have any success with higher levels of pred? I know this is a very individual response to treatment. I was thinking if I'm hanging at 40 and doing ok that I'd like to wean off prednisone slowly and save the other treatments (Rituximab, etc.) for if I drop very low again. I also enjoy jogging and was wondering if others run as well, really helps me decompress. Also, since I am a newly diagnosed person, should I pursue trying other treatments now or save them for later? Didn't know if I should put myself through more trials of other drugs if being acute rather than chronic would see a better response?
Thanks for your time and opinions.

Hi Sheri. I'm glad you found us. You should copy and paste your post in the Newly Diagnosed section. More people would see it and you'd have your own thread to follow. You would get more responses.

Hi Sheri,

Two of the most common mistakes in treating ITP are (1)overtreating and (2)making too many changes too quickly, before getting a clear result of the previous treatment. I can really sympathise with your wanting to use as little prednisone as possible, and long term that is very important, but my unprofessional opinion is that it would be better to see where you stabilize with your current dosage before making any changes.

So far, your responses to IVIG and prednisone have been very weak at best. Only time will tell, but it is possible that all of the ups and downs in your counts since you began treatment could be due to something other than the treatments you have received, and could even be natural variation. If so, there will be other causes to look for besides ITP to account for your low platelets, such as aplastic anemia or a systemic infection such as CMV.

Btw, I think what Sandi meant was that you should start your own thread under the category of "Newly Diagnosed". You can do this by going to the tab near the top of the page and choosing the one that says "New Topic". You will have to choose the appropriate category (Newly Diagnosed in this case) then create your own subject name for the new thread. Before starting the new topic, you could first "copy" your previous post and "paste" it into the new thread to save retyping.

www.bloodjournal.org/content/106/7/2244
How I treat idiopathic thrombocytopenic purpura (ITP)
...There is no consensus concerning the optimal duration of corticosteroid treatment. Our practice is to continue full doses for 3 to 4 weeks, until a response is seen or side effects become intolerable. Response rates vary from 50% to 90% depending on intensity and duration of therapy, but only 10% to 30% of patients enter stable remission once therapy is tapered or stopped; even those who enter remission often require additional or alternative therapy, at least initially. We taper prednisone slowly, especially once doses of 10 mg/d are reached, to avoid adrenal insufficiency. Failure to respond to prednisone, IV anti-D, and/or IVIG should prompt the diagnosis to be reconsidered and a bone marrow evaluation, including cytogenetics and flow cytometry, to be performed.

You have no idea how much I needed to hear that right now. I am still in the first 3 months of this and regularly have counts under 20. We're trying to figure out what is going to work for me but this journey is hard at the moment. Thank you for your awesome words!

My son, 19, was diagnosed November, 2015...platelets continue to decline, now at 75...he also has hyperprolactinoma, pit tumor .6 non secreting, cushings disease, low T, hematuria RBC 20-50 in urine (cause not yet known platelets not low enough for blood clots, abdominal ultrasound showed nothing)...hypogonadism, macrocytic anemia...my question is, if they cant treat his cushings/hyperprolatinoma (dopamine antagonist lower platelets, Dexamethasone raises cortisol...its a catch 22...any advice is welcome! 2013 blood tests were fairly normal...he quit football and powerlifting in 2014 and within a year he gained 100 lbs...still confirming cushings...4 tests in 1 month, first 2 administered at wrong time, 24 hr urine inconclusive, saliva test negative so ENDO ruled out cushings but his new Internal Dr said he was sure he has it so he took him off meds and in 2 weeks will test again...

Are you asking if there are other ways to treat ITP other than steroids? If so, then yes. Have his counts been low enough to treat? Please start a new thread so everyone can see and address your questions.

Just wanted to say Hi and thank you for the add.
I'm not sure why my platelet counts started dropping. They gradually decreased and decreased and are now at 99. Most of you would be doing back hand flips for a 99 count. But this is really disconcerting and a bit scary for me. I found the info in this thread very helpful and reassuring. Thanks.

I know it's scary, but you do really have good counts. ITP is really considered to be a count consistently below 100k. Hopefully, they don't go any lower.

Hi there

your advise is ass kicking...now i wanna lay it down from my end ...i reside in South Africa where Hopitals are not as advanced as yours we getting there....i dont wanna take up too much time so here goes...my "so called doctor" after attending the clinic for almost a year now finally decides that best would be for me to have my Spline removed this was in May...i swayed and tossed and turned over this and didnt confirm in May i advised they have to give me time....and as i attended my monthly appointments i spent time on benches with patients who had the Same Blood disorder "ITP".....and when i asked "DID YOU REMOVE YOUR SPLINE" they would say "YES" then i ask "AND THE RESULT" same problem but the SPLINE IS gone....so how does removing your spline help and why do doctors recommend it after i sat on benches discovering "REMOVING YOUR SPLINE DOES NOT SERVE THE INTENDED PURPOSE"......so after all this and reading the stories here on PDSA i am keeping my Spline and living with my ITP.....i am researching my own meds and herbal what nots to try and cope with the Low platelets because if i dont consume 60mg's of Pred then my platelets reach lows as little as 2%...and here in SA they will only do an IV if you are scheduled for an opp...not just because it is low....so Pred and Aziotripine seems to be their answer to this story and chopping your spline....next step INDIAN GOOSEBERRYS AND PAPAYA LEAVE EXTRACT ! anyone had used/consumed on these and what was the result ??????????????

Rashieda, welcome to the forum. I am glad you are learning and taking charge of your own treatment.

All treatments have side effects (some more than others), and different people react differently to the various treatments, both positively and negatively.

The reason splenectomy is so widely used is that it does have an excellent success rate, although many people will relapse over time. For those for whom it works, it is the closest thing to a "cure", where you might never need further treatment. The biggest problem is that the side effects, especially increased risk of infection, are permanent, and people do die of these infections. So, if the splenectomy stops working, you are stuck with the side effects for the rest of your life.

Long term use of prednisone is not advisable. You need to find a better alternative that works for you, and then VERY GRADUALLY taper off of the prednisone.

I don't know anything about gooseberries, but some members of this forum have used papaya leaf extract and swear by it, and there is good evidence that it is effective in treating thrombocytopenia that accompanies dengue fever. Anything you try, make an effort to change only one treatment at a time, and give that treatment time to work before moving on to the next. Some treatments work fairly quickly while others may take up to 12 weeks to take effect.

I hope you will keep reading and checking in with questions.

Hi Rashieda! I'm glad that you are questioning things and making your own decisions. Splenectomy was the first ITP treatment that was used more than 50 years ago. Since then, many other treatments have become available but many doctors still resort to the old school methods. Splenectomy is a coin toss, sometimes it works and sometimes it does not. When it doesn't, patients are left with the same choices that they had prior to having the spleen out and they are immunocompromised for life.

Do you have any choices other than IVIG or Prednisone? How are your symptoms when counts are low?

Sandi,
This probably isn't the way to go about this, but I am unable to find the appropriate means by which to post a question. I am newly diagnosed and so my first concern is to find a hematologist I can partner with through this "journey" - love the phrase I have seen throughout this site. I live in the Portland Maine area but am willing to travel to Boston to do this right. Could you possible point me in the right direction. I tried using the site's "find a doctor" - but none of the physicians listed from the office my PCP referred me are listed. Thanks!
Den

David J Kuter, MD is a leader in the field and is on the PDSA board of medical advisors.

www.massgeneral.org/doctors/doctor.aspx?id=16606

I hope you can find someone closer to you! Perhaps Dr. Kuter's office can recommend someone.

Sorry, just saw this message. Thanks, Rob!

Thanks so much, Sandi and Steve, for all your help and inspiring words of wisdom. I was recently diagnosed and this website has been very helpful. I am currently under my oncologist's care (previous breast cancer) because my rheumatologist (for Lupus) suggested prednisone which I did not want to take it. So, as you say, some doctors are more understanding and conservative. My count has "stabilized" at 32, when it was first noticed, it was in the 50's. This is such a strange disorder, because physically, I feel fine, (except for loss of taste of food) but my emotions are another story. I actually stayed away from the sight for a day or two just to take a break from it all. I count my blessings every night I sleep well and can get up and move the next day.

If your counts stay above 30k, you may not have to treat. If you do, please know that ITP is usually manageable. Keep reding when you're up to it. Knowledge is power.

Hi Sandi: I have just been diagnosed with ITP. I am still trying to wrap my head around this.
Dr. put me on prednisone, although it brought my count up to 330 from 16, it made me crazy!!!! my poor kid, I am a single mom of 13 year old. He asked if I was on drugs!!! yes!!!! crazy drugs. I could not take them. I did not take anything for a few weeks. I went in Friday and they were at 43. Dr. put me on promacta. I just got it threw the "special CVS" . since there are so many stipulations on how to take it, empty stomach, no antacid meds etc. I took it at 5 pm. first one. My son was freaked at all the side effects, pages and pages. I am as well. Since my dr. appointment I have been afraid to move off the sofa. reading that 20 is your good count, gives me hope that maybe 40 would be ok? I have been afraid to start back at the gym, (usually there every morning) because I had some dizzy spells, and loss of breath, also some in my
gurgling lungs? like fluid? I have also had a twitch in my left eye for over a week. Plus, my legs, feet, and hands ache so badly. I told the dr. he listened to my lungs, looked in my mouth. That was it said nothing. I think I need a new dr. this one does not talk, and does not act like he cares. He never looks at me when I am talking to him. I have a case worker, which helped a little to communicate my fears and needs to dr. but feel there is more to tell him. Like I had lymes in 2000, I have a rare dental issue as I was missing 11 teeth after losing my baby teeth which caused me to have bridges from age 12-13 on. Last October I decided to get implants, 5 of them. It was a long process. After 5 tries I do not have the final fit for my permanent teeth. I am in SC and although I love my dentist and have been going to him a long time, I do not feel confident that he will ever get the lab to make a proper fit. I have already paid him. He says he feels he has finally gotten the right one, and knows it will be right, however the blood dr. said "no" to going to dentist with count at 43.
I am worried about the side effects of this medicine. I cannot take steroids. Is this considered a steroid? and how many folks have lost their hair???? Do you think it is ok to go back to working out? Should I get another dr? thank you for any help.

hi sheri, my name is Lynn. I newly diagnosed about 6 weeks. Totally freaked about this entire thing.
I like my wine, as I am a single mom of a 13 year old, and at the end of a long day... well you know. No one has said anything about not drinking? last count I was at 43. I started taking promacta yesterday. all the side effects!!! losing hair, sick, aches, itching. I too work out every day. I started getting dizzy, and winded. I stopped after going to dr. Friday and him telling me not even to go to the dentist! I cannot be out of commission as there is no one else but me for my boy. oh I also have had a eye twitch for over a week. every little thing that is not normal I freak.

Waterbug - I know it seems scary, but take a breath and calm down. It's going to be okay. The worst part about ITP is the treatments, especially Prednisone. Prednisone makes everyone feel that way; you just have to try to stay calm and get through it. It can make you feel achy when you taper off of the drug and that will go away in time. It could also be the cause of the eye twitch, I had that too. That will also go away.

Promacta is not a steroid and most people don't have any side effects and if they do, it's tolerable.

Usually, anything over 30k is considered to be a safe count. Counts do not have to be normal. Most people can go about their normal lives above 30k, and you could probably go to the gym as long as you don't do any heavy weight lifting. As far as the dentist, you need to know what a safe count for that would be and with treatment, you could work towards that and get the dental work done.

I think Prednisone may have caused the hair loss but it should stop soon and will grow back.

Stress isn't good for you and will make you feel worse. We've all been where you are and got through it....you will too. Once you start to learn about ITP you'll realize that it can be managed and you can live a normal life.

Hi Lynn,
Welcome to the forum. I know things can sound scary in the beginning, but take a deep breath, you will be okay
I take 50mg of Promacta daily and am lucky to have essentially no bad side effects. I feel pretty normal and my counts are staying around 50, which is the target count for the medication. I haven't heard of anyone here who takes Promacta (we have quite a few) with hair loss, itching, or perpetual sickness, so those are not common side effects of the drug. If you have been on steroids (Prednisone), that can definitely cause hair loss and joint pain and lots of other bad side effects. Lots of people start taking Promacta because it is so much better than Prednisone in terms of side effects.
Since you just started taking Promacta yesterday, you won't know about your side effects until you give it some time. Headaches can happen for some people as well as nausea (those are the more common ones). I had a little bit of nausea (very mild) when I first started the medicine, but that only lasted for a week or so and then I felt just fine after I got more used to taking it.
Try not to stress out too much and do your research so that things seem less scary when you understand them.
Good luck.

Waterbug
Read this; it is written (in plain english) by nurses for nurses with no ITP knowledge, which was me until 3 years ago.
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Hi Sandi:
My count went up to 60 from 53 in three weeks. My dr. said that if it continues to go up while on 25 mg of Promacta then we can start taking the pills every other day. If the count stays up then maybe not have to take them at all.
The side effects are tired in the day, aches in my muscles, and joints and no sleep at night without more medication. I don't feel like working out because it just makes the aches and pains worse. I still try to get up and go to the gym anyway.
I go back to dr. Nov. 6 hopefully I can get off these pills.
The doctor was very confident in saying "people do not usually stay on the medication longer than 6 mths" Almost like he was saying people will have ITP forever but only take medication for 6 months?

Good news on the counts! I'm not sure what your doctor meant by that six month comment. People stay on medication as long as it takes. People do not necessarily have ITP forever and if you find a medication that works, stick with it.

Hi

I was diagnosed with a low count 5 weeks ago. It's been as low as 11 - and up to 24 today. They are not sure if it's a side effect of chronic depression medication or ITP.

I have read all the dietary/lifestyle advice and am starting to follow it.

Are there any supplements that anyone can suggest in terms of vitamins?

Thanks

Hawk:
There really aren't any vitamins that will raise platelet counts, but people with ITP sometimes have deficiencies with certain vitamins. The usual ones are Vitamin D and B-12. Vitamin C can help with the symptoms (bruising and petechiae).

Sometimes when platelets drop due to a medication side effect, stopping the medication does not always cause ITP to go away.

Are you treating?

Thank you.

I am on 120mg Prednisone which makes me feral. Fat. Sweaty. Pimply.

I've looked at dietary changes and have started to implement them. I feel the change in meds is because they don't know what to do.

Thanks

I am one day past diagnosis. Extreme fear and little information. Thank you. All this helps to reduce the feeling of panic.

Newly diagnosed in Nov 2019. I've been in and out of hospitals ever since. Just found this group/forum. Thank you!

If you have any questions or comments why not start your own thread.
Most of us love to give our opinions

What has your count been - why were you in/out of hospitals the past 2 months?

Welcome to the forum!