Doctors Discrepancies and lack of information

Dear all,

I am glad to pdsa.org exist and glad to read all of you. I just joined it. I was diagnosed with PTI in September through a routine health check up. Chances are that several vaccinations that I took at the same last year in November before being sent to the jungle 3 months were responsible for the craziness of my platelets. Either the many antibiotics I took from March to August this year for different small illness have. God knows. I am 50. After reading and talking to at least 4 specialists my conclusions are the followings:

There is an amazing systematic and endemic doctor discrepancy on the matter plus almost no statistic available.

1 - Spontaneous or treated remissions looks like the Holy Grail.
It is incredible that in the 21st century there is no statistics available to say how many adults in the segment over 30 got an spontaneous remission, didn't manage to recover or had relapses during a period of years. If chances of remission is 1% or 90% is something I want to know. The vague answer received is always the same: "in children it occurs very often in adults much less". Sorry is not good enough. If my chances are just 1% I want to know.

2 - What can trigger a Remission? This question often has no answer. Does Prednisone (corticoids) help to trigger or to increase a chance of Remission? or it is simply a tool to survive until a potential circle of remission starts? What can trigger a chance of remission?

3 - Use of Prednisone (Corticoids). With different doctors I have been up and down on the dose. From a 100mg a day and a "please return in 3 weeks" to a current 20 mg a day to keep the count around 50.000 platelets . Incredible! Obviously quality of life is different with lower dose.

4 - The DO's and DONT's from doctors varies as the monthly horoscope does.
- Gym? for some is a don't for other is ok
- Sauna? for some is a don't for other is ok
- Massage? for some is a don't for other is ok
- Flying? As I read here, with 0 platelets is ok. My last doctor only allows me above 50.000 and with 4 days of Dexametasona prior to travel. That's crazy!
- Sport. If they all agree that contact sports are off the menu, there is a discrepancy on the rest. Tennis? Soccer? Basket? Soccer? Jogging?

I almost feeling like I am in the Middle ages. Please do you have any answer or we are all on the same boat?
Thank you in advance

The only thing for certain about ITP is there is nothing certain about ITP.

I've been in "remission" for many years - but my counts are not in the normal range. Prednisone 1st did it, when a tetanus booster took my count to the gutter 1 IV of WinRho did it. But again, I am not in the normal range.

We moved to Japan shortly after diagnosis & I was on 60mg of prednisone - that's a plane ride for sure, then flew here & there [Singapore, Thailand, China, Egypt, Italy, England and more] on vacations and to the US on home leave. Never did ask a doctor if I could fly, never did have a count done before flying - but that is me. The only thing I was told was by my hematologist in Tokyo [he knew my US hematologist it turns out] was to wear compression socks or stockings when flying & to get up and walk around often.

As for Do's and Dont's my hematologists never told me not to do anything [personally I wouldn't want a massage anyway, same with sauna and hot tub]. Only reason I gave up skiing when we returned from overseas was because I decided I liked my bones in the shape God made them.

Find a hematologist you trust and respect, that is important. Good luck!

Sorry you find yourself in this situation, but glad you found this place. I am not an ITP patient. My daughter had ITP as a teenager. She's an adult now, in remission for nearly ten years. If you are not seeing a hematologist, please find one. Look at a teaching hospital if you do not know one. I find most other doctors do not understand ITP. We never found any firm answers on those questions, and we found patient experience is quite varied. Because my daughter was a female teen, we were told her chances of spontaneous remission were probably not as good as in a younger child. She was told no contact sports. Not even volleyball until counts were steadily above 50. She could play "mild tennis" above 30, but no aggressive playing to the corners. No skiing. Preferably no bicycling, at least not without a helmet. Nothing that could result in a blow or a crush injury. She was given IVIG as a rescue treatment on three occasions, and it worked to bring platelets up quickly. They fell after, but the decrease was gradual and she settled at a better number than before treatment. She used prednisone to bring the count higher for a dental procedure in which bleeding was expected. (That was done in the OR with the hematologist just a quick walk away, in case of bleeding issues.) Before prednisone was used, she had a bone marrow aspiration to rule out other causes of the platelet drop. We once tried a dexamethosone pulse treatment, but after the pulse, she dropped quickly to a count she previously tolerated, developed a nonstop nosebleed, and was admitted to hospital for IVIG. So we never again tried a dexamethosone pulse. For some reason, soon after that, her counts gradually rose to a safe, but not normal level, and stayed there. She resumed volleyball and other activities previously forbidden. A little over a year after the dexamethosone pulse (which I consider a failure with her), she developed a prolonged strange illness that was very troubling and involved lots of medical visits. It seemed consistent with a tick-borne illness, and she'd been in a setting to get one, but all the tests were negative for that. She was given doxycycline, and it eventually cleared. Soon after the doxycycline, her counts were normal, and activities were no longer restricted. Since then, every CBC has shown a normal or slightly lower than normal count. I can't say it was the doxycycline, but I've read accounts of other similar results. Still, I'm not sure you'd find a published study that would support it. Just like the patient accounts of ITP, the studies on ITP seem to be quite varied and can be confusing. Sorry for the long post. Just wanted you to know you're not the only confused ITP patient out there. The very best thing you could do is to find a hematologist knowledgeable on ITP. We were blessed to have a great team of them, and we always knew they were giving us the best guidance they could. Praying for your spontaneous remission,
Norma

Thank you. I appreciate the information it is useful. lets see how it goes with me:)

Hi, Juliannesmom Would you mind I am asking what kind of symptoms your daughter had? My 12 years old son suddenly got ITP 2 months ago with a count below 5K. He is not responding to IVIG or Prednisone along. But when they put IVIG and Prednisone together, he had an excellent response which bought his count up to 500K+. But it only lasts for about 3 weeks. One week after his ITP diagnosis. I found some strange red circles on his leg and he tested positive for Lyme disease (11 out of 13 bands positive on Western Blot test). We never noticed any tick bites and he also had no any other Lyme symptoms. He received a 21 days course of Doxycycline, which made no impact on his ITP. Since I read some other posts about co-infection, we also tested him for Babesia and Ehrlichia. But both of PCR tests are negative. Infectious disease specialist said he may have coinfection but it is already cured by Doxycycline. She told us we are done with Lyme and just forgot about it. However, my son's platelets are still under 10K.

Hi Th889,
I dont want to sound too bitter against doctors because I am sure they are doing their best in good faith. However in my experience there is a systemic lack of information that is probably due to the lack of research. People with ITP are not so many after all and therefore less potential consumers of the products of investigation. Returning to the topic of linking ITP with an infection, my guess is that some ITP considered primary might be in fact be secondary and be caused by an infection. Bacteria can in fact live in our bodies without giving symptoms. They even discovered recently there are bacteria in the brain and they didnt know it was possible.
My experience with Helicopbacter Pylari in the stomach is the following: First of all, only my 4th hematologist mentioned a link between ITP and Helicobacter. So I have been treated for it last month. No statistics how many people have been cured forever by removing this bacteria. There are 2 small research in Italy and Japan that no doctor believes in. So, there is no statistics and we are in the 21st century. Once you finish the treatment to eradicate Helicobacter the result shown improvement will come out after some weeks. This is due to the fact that what the bacteria does is to pump its protein into the bloodstream. This protein gets attached to the platelets and the antibodies eat the platelets together with the protein. The proteins in the blood need several weeks to be cleaned out even if the Helicobacter stops pumping it in. Any other bacteria behaving the same? God knows.
My doctor told me last week when my count was 45000 with a 20 mg that we ruled out now for sure Helicobacter because you finalized the treatment over a month ago and it should have been by now well over 60.000. Funny enough, today, one week after that I got 73.000 with the same 20mg......Is it Helicopbacter? You see in the world we live?

GrouchoMarx, I totally agree with you. Our hematologist only focuses on ITP and dismissed any other possible links. He refused to test for Lyme coinfection and feel it is just coincident Lyme and ITP happen at the exact same time.

th8899, I sent you a private message.
Norma

Not intending to exclude useful info from anyone. Some of what I sent th8899 may be an overshare for an online forum. The brief answer to the symptoms inquired of: presented with itchy eyes and sore throat, with hiving a few days in, which became much worse seven days along, with swollen joints and weakness adding on by the tenth day. Treatment went from allergy stuff, to adding prednisone (which I forgot to mention in pm), to azithromycin for suspected mycoplasma, to doxycycline for unknown bacterial infection (everything cultured was negative but WBC showed left shift). For comfort and hiving, they also added another short course of prednisone and ativan. The severe stuff cleared quickly with the doxycycline, but the hiving was intermittent and decreasing over about three months before it was finally gone. Mystery illness, with some but not all features of Lyme and rickettsial illnesses, for which she tested negative. She had recently been in a setting which might be tick-friendly, but had also gone to DC with a class trip and been in crowded environs and could have picked up a germ. We'll never know, but we were glad it passed.

Thanks for sharing. I will pray for the best outcome.

juliannesmom
Maybe the Pred was the cause of your left shift not a bacterial infection.

Maybe the pred but 5 weeks on 20 mg Pred and stable on 44.000 to 50.000 and all the sudden 73.000? Maybe

I'm not a health professional, but the doc ruled that out as the cause for some reason. Perhaps because she was only on pred a few days (with no help for the hiving), and had been off it for some number of days before the blood draw. My public post didn't include the number of days between things, but the pred was started on day five for only a few (5 I think) days, and the blood draws with the left shift were about 14 and 20 days in. The second course of pred was added after the 20 day mark, when she finally got to see a ped rheumatologist, who also added the doxycline which seemed to be the solution for the illness.

It's hard to know the 'cause' because it can be difficult to find. In my case, ITP was the first symptom of Lupus, but all labs for Lupus were normal for the first 9 years. Many things can trigger ITP; I'm sure you've researched Molecular Mimicry. Anything can activate abnormal cell responses and you actually named a few in your first post.

Unfortunately with ITP, doctors do tend to have different ideas about treatments and activities. In time, you will begin to have your own ideas about what YOU want and need. At that point, you have to find a doctor who will support your decisions. That is the key to success in living with ITP.

Hey . I was diagnosed 9 month ago . at first days , I was reading articles and all mentioned "In adults , spontaneous remission is rare " . What the .... ?!
but those were mostly old articles . The fact is they have been doing splenectomy since 1916 and two third will get rid of itp and will not need treatment (there may be slightly different statistics in different studies )
But , I came to two interesting articles . I suggest you read both :
www.haematologica.org/content/91/8/1041 . Here , more than two third or patients reached above 30k during time (30k was their borderline for remission status ) And also studied their relapses . one third relapsed during 10 years , but only half of them underwent treatment again (maybe they said : ok , we will live with 10k and off pred ! ) . And they finally suggest that 3 years waiting time is good , If one wants to do splenectomy . I mailed one of them and she said "2 years after diagnosis , If you are still below 20k" . I read it "2 years after diagnosis , If you are above 10k with less than 7.5 mg of prednisone " !

And the second one :
www.ncbi.nlm.nih.gov/pubmed/11877261
She managed them with Anti D infusions . 43% remained above 30k after several months of this treatment . Others , who were still on treatment , received it much less frequent . (and those who remained above 30k off treatments , mostly did it between 1 year and 2 year after diagnosis ) And she finally comes with the conclusion :
"It suggests that most adults with
ITP have a tendency for their platelet counts to improve over time."

So , Spontaneous remission is not rare , and usually happens within 2 years after diagnosis . There's another one that suggests 2 years as a good borderline : A very famous study about itp :
www.ncbi.nlm.nih.gov/pubmed/11313240

"Long-term outcomes were determined relative to the response 2 years after diagnosis, because most (93%) patients who ultimately attained platelet counts above 30.0 x 10(9)/L (30 000/microL) did so within this time frame"
But there remains a question . Do we have drug induced remission ? (except for rituximab) Or does different maintenance treatment (or even no treatment) have different remission rates ? that's not yet known well ...

Thank you Lman for the articles and the encouragement. I strongly believe something will make a breakthru in the coming years. Treating ITP with pred seems very backward and makes our live miserable. I just finished DEX puls on Monday and i will see how low i get in the next few weeks before taking any decision. If platelets are above 25k without medications I will go for it and wait for a remission as you said. Doctors has their view and influence also and some want us over 50.000.

Dex usually results in a quick spike in counts followed by a major drop. Hopefully, that will not happen to you but it is pretty common.

I battled ITP ups and downs for 8 years, but I did go into remission and have been there since 2005. It happens. I did NOT have a splenectomy.

I know Sandi.
There are also encouraging studies one DEX like this one.
www.ncbi.nlm.nih.gov/pmc/articles/PMC4962720/

At the end we need to try everything and wait. Proceed by exclusion. I still don't rule out Pylori or that my hair transplant might have slowed down my marrow bone production. Anyways, all will be known this month:)

Sandi
As you were diagnosed with itp on 1998 , And there weren't many treatment options at that time , What was your treatments (and doses if possible ) .
Did you underwent any immunosuppression before you were diagnosed with lupus ?
And finally you achieved your remission after rituximab infusions ? It's interesting that rituximab effects vanish after 6 months , but some people still remain in remission (some who have been diagnosed years ago , so spontaneous remission is less likely )

Groucho - I've read the studies on Dex. The problem is that they always state that the treatment is 'well tolerated' and I can tell you from listening to this group for many years that it is not. Each subsequent pulse seems to get worse and some drop out before they hit the six months of monthly treatment. I've rarely seen remissions from Dex even from those who complete it. Please keep us updated!

Lman - My doctor first prescribed Danazol when I was diagnosed. Odd first choice, I know. I only took it for a week because I broke out in hives. He then decided to try Win-Rho. I say 'he' because I was uninformed at the time and did whatever he said. Big mistake. I had a treatment every week for five weeks and my counts never budged. I didn't realize that if it didn't work after the first one, it wouldn't work with more. He should have known that though. We then went to Prednisone, which I continued to use on and off for years. It was cheap and there wasn't anything else until Rituxan came along. I knew IVIG was short-lived and not worth my time and money, so I never tried it.

I had a bad reaction to Rituxan (serum sickness) which threw my immune system into a tailspin. I believe that is what triggered Lupus for me since the symptoms began immediately after the reaction. I don't know why I ended up with ITP remission, it's odd, but I have been on Prednisone since 2005 when I had serum sickness, so maybe that helped. I don't know....my immune system went on to battle something else.

My case might be more or less common but worth to mention.
I never had peteccia, hematomas, lack of energy etc... I went to a check up just because a work colleague told me our insurance pays a thorough examination. To To my surprise my platelets were 9000. Was I on low platelets for weeks, months or years? I will never know. The last check up was 6 months and I had 90.000. It still qualifies as trombocithopenia for my doctor. I had a vaccination one year earlier. Was it the cause? or I had earlier, even from childhood with years of remissions. Did I broke a remission by having so many non recommended drugs during this year (Iboprufen, Diklofenac aspirins, antibiotics of all kind). I guess I will never know.

From being completely asymptomatic and having a full life (gym, soccer, travelling by planes as much as I needed) I started to have a very miserable life cos of corticoids effects (i put on weight, i look uglier with my round face, corticoids makes me negative, i stopped sports at doctor order, and people look at me as if I have cancer etc....)

4 days DEX Pulse wase much better than prednisona. The physical effects was even milder than the 100/80 mg dose i had but the psychological effect was much better (Paranoias, negativity, moods etc...) The problem with DEX is that after a week of stopping the treatment my count dropped to 39.000. It would be worth if it keeps my count high for at least a month but not just for one week.

The only positive move so far is that my insurance will authorize me to use PROMACTA with basically a co-payment out of pocket of 4% of the value. What is not too bad. I am asking my doctor to consider to start with it. I understand that if i would enter in a remission one day, it will happen being on PROMACTA as well as being on Corticoids.

GrouchoMarx wrote: I understand that if i would enter in a remission one day, it will happen being on PROMACTA as well as being on Corticoids.

Eh....remissions are different for everyone. It's possible, but not guaranteed.

We have all said at one time or another that the treatment is worse than the disorder.