New article new diagnosed one month

This has been all to much to digest for me.
I am a single mom, recently lost both parents, and bought a home.
I found I could not get over losing my folks as I am an only child.
i had a heavy menstrual cycle and ended up in the hospital for a DNC, however they could not do the operation because my platelets were at 16. I did not even know what platelets were! after several transfusions and 4 days later they went up to 52. The operation was successful, and recovered. However the "blood" dr. was called in, and with a brief stay said I had ITP. WHAT??? I have always been healthy, do not smoke, drink some, work out every day, very active with my son 13 yrs young. I went to the dr for the check up and my count was 330. Oh I am better!!!! No you have ITP, you have to where this bracelet and take Prednisone. I took it 3 days and thought I was going out of my mind.
I went back to working out, and doing normal stuff. But my legs, hands, back, and feet hurt all the time. I found my circulation was not good as well. 4 weeks back to blood dr. Wednesday, count was 46, Friday 32, now he says I have to take Promacta. The side effects??? bad. How many people have lost their hair? stayed sick? and does it help? The doctor, has very little to say, but says nothing i do will get rid or help ITP.
I have not had any bruises, no bleeding, nose or otherwise. I have not worked out in 3 days, because someone said I may pass out with the low count. you seem to know a lot about this ITP. What is the real truth? Dr. said the aching pains in legs etc. have nothing to do with ITP, then why did it start after I was diagnosed with the stuff???? He says there is no way to tell if they drop down to zero unless I have a nose bleed or bruise. Scary to think of picking my son up from school with zero platelets. I am supposed to get the meds today in the mail, a "specialty drug" , I have stayed home now for 3 days, only taking my son to and from school. I am scared. thanks for any help.

It's all very scary to start with, try not to panic.
Click on the red link below, it should help. It is written by nurses for nurses who know nothing about ITP (me 3 years ago). It's written in plain English not 'nurses speak'.
Booklet

It helps when you have a doctor that doesn't scare you. It seems as though yours is a bit pessimistic.

ITP does not cause aching pains, but Prednisone can. I don't know why you'd be losing your hair. Prednisone can cause some hair loss, but not that fast. Most of us think that the side effects of Prednisone are much worse than the side effects of Promacta. You just might do better on that drug than you did on the steroids.

Most people do not know what their counts are on any given day unless they have a count. Unless you have symptoms, most people assume they are fine and just go about their normal lives. If you don't have symptoms, that is a good thing. Symptoms are more important than the actual count. Many people can handle low counts without something serious happening.

Did anyone look into the fact that your heavy menstrual bleeding could have been caused by the low platelets? Was there another reason that you know of? The D&C may not have been necessary.

ITP is scary at first. Please know that very few people ever die from it as long as they are managing it well. Read about the different treatments and you'll be a pro in no time. It really helps to know your options so you can discuss them with your doctor.

waterbug, is it possible that you've had ITP, perhaps less severe, for many years? Several years since last known good platelet count?

I ask because it seems like in cases of those with mild symptoms (like myself too) one's body has compensated over time for the lack of platelets by making much better platelets. Better in the sense that a fewer number are required to function properly.

see that is what I am thinking. I have always been healthy, no bruises, or nose bleeds, I am thinking this dr. is just hell bent on making his diagnoses right, and will not consider I may be just fine.
I am going to take the promacta till the next visit on the 8th, if my count is good then I am good.

Yea, putting things in perspective helps. I thought things were fine before my diagnoses. A bruise here or there. What's the big deal?

And then when I go to my hematologist. She is the hematologist in an office full of oncologists. One can only feel lucky to have ITP in a waiting room full of cancer patients. It's really quite humbling.

Waterbug - it doesn't quite work that way. If you have a low platelet count, then his diagnosis is correct and you are not fine. A low count is proof that something is wrong and it is more than likely ITP. I was healthy and fine too until my ITP diagnosis, then I wasn't fine. I never really thought of myself as sick when dealing with ITP, but I did know that I had to do what I had to do to manage it.

As far as Promacta, it's not wise to just stop taking it. One of the listed side effects is that once you stop the drug, counts might drop very low. Getting off of it can be tricky and you need the help of your doctor. Your counts very well might be good, but Promacta is a maintenance drug which means that you have to keep taking it to keep counts up. A good count one day does not mean that ITP is done and gone. Promacta should be dosed to keep the count around 50k, not normal ranges. A risk of blood clots exists when the count is above 100k and it does happen.

Getting an ITP diagnosis does not mean that it will last forever. Many people go into remissions that can last months or years. You just have to manage it until that happens and if it doesn't, you just keep managing it then. It gets easier in time.

Hi waterbug,
My heart goes out to you. I was just diagnosed on 5/9/17 and was like you healthy with a 16 year old. I am even now still having a hard time believing I have ITP. I even went to Mayo Clinic so they could find something else but they did not. I started Promacta 50mg on 8/6. I am waiting to see if it works. I am glad you found this group because it is sooooo helpful to be able to get feedback from people who really understand the disease as well as what the appropriate treatments are.
I hope your platelets stabilize on Promacta!
Be well,
Cindy

Hal9000 : You are so right about feeling lucky and being humbled when you get treated at a cancer center. Since I started in early May I have encountered 5 people I knew receiving chemo or radiation and 3 of them have passed away already. There are never less than 20 people in the waiting room waiting to be processed and taken to their reclining chair for 4 to 6 hours of IV. There are 36 chairs! I am always the healthiest person in the room. I quickly made peace with my ITP diagnosis and treatment after seeing what so many others are struggling with.

yes your are right. The Cancer center I go to is grey, a lot of glass doors, waiting room full of sick people, then waiting to get blood taken, then waiting to see the doctor. It is hard to stay positive
I am taking Promacta. It causes a list of side effects of course, however the worse one is tired during the day and no sleep at night. Night after night after night.
It also says causes "hair loss" i have only been on it for a week. Have you or anyone had hair loss with this medicine. I am hoping and praying this Friday my count will be up and then again, hopefully I will not have to take this med forever. I want to be back normal.

Hey Cindy:
Have you have tired during the day and no sleep at night??? and have you lost any hair???
I have had NO sleep at night and exhausted during day. I have not lost any hair, but it was one of many of the side effects.
I go this Friday, I am praying that they go up. I want to be normal again.
I am also going to therapy at the Cancer Center, I have gone once, I go again this Thursday,
I just can not believe this is happening.
I feel like I want to say to everyone "I am sick" and that is why I cannot run, hike, bike, and all the things I used to do. My body aches. Have you had body aches???? my legs, shoulders, back. And night is worse.
I am glad not to have cancer, however they have not done any tests on me to find out WHY my body is confused.
Have you had any tests done?
Lynn

Thank you for info. I am probably in denial.
I have never been "sick" or had anything before.
I am seeing the therapist at the C. center. I have gone once and go again this Thursday. Doing all I can to deal.

Your aches and pains are probably due to Prednisone. That is very common after the drug is tapered or stopped..
There really aren't any tests to determine why ITP occurred. None of us really know why it happened.
ITP can be temporary, so stay hopeful. I certainly didn't think of myself as 'sick'...I just had low platelets. If anything, the treatments can make you feel sick, but life can be fairly normal. It will get better.

Hi Lynn,
I have slept OK on the promacta 50mg. Last night I upped it to 75 since I had a platelet count of 1,000 yesterday. Really 1,000 is ridiculous! I agree with you what is going on in our bodies? I am still fighting the ITP diagnosis since I was in Costa Rica the week before this all started happening. I am taking the drugs but it is all ineffective anyway so far. Every 2 weeks I crash to 7,6,5,4,2,1. Crazy!
Have not lost hair. Hope I don't given it is already so thin! I did have leg aches last night just when getting to bed maybe from upping to the 75mg. (or the IVIG or dexamethasone I got yeasterday) Definite body stiffness getting in and out of bed.
I don't recommend this but by mistake I hiked 2 hours some uphill Saturday with very low platelets that I discovered to be 1,000 the next morning. I did have mouth blood blisters but when I started to get a slight headache I turned back.

I think exercise is so important. Are you in too much pain to walk?
I have had to beg for a infectious disease tests like for ticks and hpylori. I want to get fungus and yeast and parasite stool tests but have not talked anyone into it yet. I am considering an endoscopy to see if they can find something that way. Have you been out of the country?
It is so hard Lynn. I don't want to be sick either! I get frustrated as i'm sure you do at how much time this takes away from your time with your child. I am trying to keep a good attitude and believe that I will be healed or go into remission and I hope that for you and all of us!
I am going to get some medical marijuana too but have not figured which one to get yet. I need to check out the thread that is on that topic.
Keep us posted and good luck Friday!
Cindy

hi cindy
Your count got up to 1000? wow. how did you know? why did that happen?
did your dr. tell you why it went up and then down to such a low level? was it something you did? ate?
It makes me so anxious and depressed not knowing what the count is one day to another.
I did work out yesterday, but was careful and did not feel I put 100% in. Today I am sore today.
who told you not to work out or go on hike when your count was low?
I did decide to get a 2nd opinion for dr. one I could talk to at least. I go back friday to see what the count is I have been on the promacta one week. hope it is good.
Hope you feel better as well.
lynn

I am in SC don't think I can get mary jane here. If you do get some and it helps let me know!!! Id much rather do that then take all these pills !!!
lynn

Guys, before this becomes a rumor....marijuana is not a treatment for ITP. One woman stated that CBD oil has helped her and that is something totally different. Most places that sell medical marijuana require a script and some states have strict guidelines about which illnesses it can be prescribed for. It's mostly used for pain management or Parkinson's and epilepsy....things like that. There is no proof that marijuana raises platelets.

I know that marijuana is not for ITP, I was just trying to have a little fun. it is easy to get bogged down with all this stuff.

I know that marijuana is not for ITP, I was just trying to have a little fun. it is easy to get bogged down with all this stuff.

I got blood blisters in my mouth and bruises on my body which are the two things that happen at 2,000 or less for me. I need to be a lot smarter and not let myself drop that low but I was trying to get less frequent blood tests and it was the weekend and it came back to bite me. We have no idea why it happened but I was taking selenium liquid last week for the first time so that could have contributed. I am not taking it anymore. Maybe so much exercise 6 miles one day and 2 days later a big strenuous hike. Maybe it burned up the IVIG faster? Who knows???? I am upping my current TPO Promacta to 75 mg and we will give it 3 weeks to see if that helps. If no success, I move onto Nplate and cross my fingers. I do want to try the CBD for improving immunity levels. Nothing else has been working so why not try it. I just have to figure out what one to get. I think CBDs are legal in all states.
It is tricky dealing with doctors. I have recruited my husband to be in on meetings and be my advocate. It has helped so much. I highly recommend that you bring someone with you if you can. Good luck with your platelets and dr appointment.
Keep us posted
Cindy

Wow. It hurts my heart tonhear your story. I am feeling sorry and pissed about this entire ITP. But you have had it tuff.
My prayers gonout to you.
Take one minute at a time to get through. Dont overwhelm with days.
Keep in mind that doctors are not "know it alls" and they sometimes may not hear us as individuals. Take charge and if it does not feel right dont go that way.
❤️

Yes! Insane stuff and you are right, the mainsteam drs don't know it all. I started a CBD today which I hope helps. My girlfriend gave me an idea to do Rife which is a light treatment to get rid of parasites, which I will do. Also, I am going to go to a natropath dr..
I got reinspired and looked up foods to eat again and I got carrot juice, pomegrantin juice, nuts and will get more whole grains, milk, cheese, lean protein, kale, rice and beans. I write all this in case it is helpful for you. I am still thinking coffee is bad and probably tea too but don't have data to know for sure. I hope your numbers are good and you have a good dr appointment.
Be Well,
Cindy

Sandi: I have been on 25 mg promacta for 3 weeks. I started with platelets at 16 had the DNC. I had transfusions in hos. my count went up to 330. then dropped to 43 then to 23. Started promacta, last Friday they were up to 53. My hematologist said the aches and pains were side effect of the medicine.
I am telling you it is awful. The pains are muscular, in my shoulders, back, hamstrings, calves, feet and hands.
They are worse towards the end of the day. My energy level has dropped too. All aches are on the back of my body.
The side effects I read go on and on. Do you think the longer I am on this med. my body will get used to it and the aches and fatigue will go away?
Also, my vision seems off. I had my eyes checked although I wear glasses to read the dr said my eyes look good.
Another side effect is my temper!!! could be this entire ordeal, however, I get so short fused and can not let go. Things seems to stick with me and bother me to death.
I am seeing a therapist every week, and meditating, music, breathing. Could this be the meds as well?
How long do you have to have a consistent count before they let you off the meds?

I am starting to think I have had ITP for a while. I had a cyst on the arch of my foot. The dr. did surgery and said I would be up and walking in a few days. Well it never would heal. I was in pain, ended up in a cast for almost a year. finally did MRI, nothing but some cartledge around ankle. The finally did another surgery to remove that, however it was a year 1/2 recovery for the entire ordeal. I pulled a anterior tendon in my lower leg in spin class, and it was 5 mths before it healed and the most awful pain. I had to ace a ice pack to my leg. It was awful. I had some dental work done last october, and I am still in the works with getting this done, although I did heal, seems my teeth are shifting, strange stuff.
I do think I have had this for a while. Plus I had lymes in 2000, a miscarriage shortly after, then peta rias rosea, some rare skin thing. Who knows I could have had this stuff for all my life!!!! They did not check platelets to my knowledge for foot operations.

I would be extremely surprised if you didn't have an FBC prior to surgery. Over here in the U.K. pre op bloods are routinely performed

Waterbug - ITP wouldn't have caused all of that. If you had low platelets, it would have caused unusual bleeding and bruising. CBC's are usually done before any surgery as a precaution for just this kind of thing.

When a person it on Promacta, they usually have to keep taking it until a remission occurs or they decide to use another treatment. It can take months or years. Your counts of 53k are perfect.

How long have you been off of Prednisone?

july 24th after I got out of hospital. I could not take it.
started the other 3 weeks ago.
thanks for saying 53 is perfect first positive thing since being told I could go to the dentist!!!!!
If they stay there for a while am I in remission?

No. You would show possible signs of remission if your counts went into normal ranges and stayed there even after lowering the Promacta dose to nothing. 53k is perfect for Promacta since the dose should be adjusted so that counts stay in the 50k range.

Happy to say yesterday was the first day since I started taking Promacta I have not felt like I had been run over by a car. No aches like before. some in my hamstring and back but nothing like before.
I guess it takes about 4 weeks for your body to get used to the stuff.
yay

That is so great to hear! How are your platelets doing?
Be well!