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  • Sandi
14 Feb 2010 17:50
Melinda:

Well, I can't take it on a work day. It makes my mind race and I speak without thinking and fly through my work without thinking - ha, sort of like Prednisone. It makes me feel like I'm on a triple espresso high and if I take it two days in a row, you can double those side effects. It does the same to others that I know, so it's not just me. I take it on weekends if I don't have to do anything but housework.
  • CindyL
14 Feb 2010 17:33
Replied by CindyL on topic Steve a/k/a Gort (moved from old Forum)
Thanks, Sandi. Just finished up a card for him.
  • tamar
14 Feb 2010 17:14
DRT, if you go to the PDSA home page, you'll see a link that says "Now Available: New International Consensus Report on the diagnosis and treatment of ITP". If you navigate to that article, in the introduction you'll see that a diagnosis of ITP is now NOT recommended when platelets are above 100K (not the 150K that lab reports say is "normal"). That was my point in my post above...not being "normal" should not necessarily be a cause for concern.

As with many things that can be measured numerically, platelet counts happen to have a normal distribution and create a bell curve when graphed. The scientific community has chosen 2 std deviations from the mean as "normal", but by doing that, they are guaranteeing that there will be some people at either end of the curve that will be labeled "abnormal" even though there's no cause for alarm. Just some food for thought, which I hope will be helpful.
14 Feb 2010 16:36
"If I am lucky, it will come back up above 100k again......that case it would shift from an ITP dx. to one of Pseudothrombocytopenia. And that I can certainly live with, and we'll just monitor things with CBC's as we have been every 2-3 months or so."

The thing is DRT you can live with an ITP diagnosis - I've done it for almost 21 years :) There are others here who have lived with it longer than I have - you do what you have to do.

For your sake I hope the smear looks good and your count is up there!
14 Feb 2010 16:31
Sandi what side effect of guiafenesin?
  • Sandi
14 Feb 2010 15:23
Oh, I should mention that automated counts are not perfect....you are right about that. They are set to count platelets that are a specific size, and do not count platelets that are larger or smaller than normal.
  • Sandi
14 Feb 2010 14:20
DRT:

It seems to me that you do have some autoimmune issues and can add mild thrombocytopenia to the list. Honestly, I wouldn't worry about it as long as your counts are staying above 50 and wouldn't expect you to have many symtpoms, if any, with those counts. You may have a small amount of antibodies, not enough to cause havoc but enough to cause a slight drop. Have you ever had an antibody test? It wouldn't confirm or rule out ITP, but would add some weight to the diagnosis.

I have myalgia due to Lupus and can agree the muscle pain is no picnic. It's hard to control. I have found that Magnesium helps as well as Guaifenesin, although I do have to limit the Guaifenesin because of side effects. Have you tried either of those?
  • julia
14 Feb 2010 13:08
Replied by julia on topic Infertility & ITP
Hi Gilly, Sorry about that, You had said the Doc was afraid incase you could die if the ovaries were hyperstimulated. Eptopic can kill anyone when the featus is implanted and grows in the tubes but from what i understand Hyperstimulating the ovaries is extra hormones and chemials making the ovaries make and release more eggs than normal so they can collect them and do the ivf bit.
Good luck in your quest
Julia
  • circawdm
14 Feb 2010 13:02
Hi Melinda,

Thanks. I forgot to mention, in my reading and also from what my GP has said and we have found, that with people who have below normal or even normal (especially low normal) pt. counts that the in office automated lab equipment often undercounts as a result of clumping, poor calibration or problems in collection.

Ten days ago I had a test and my pt. count was 112k...lowest I had been to that point in time. My doc sent it to the hospital to be manually counted and looked at, and they came back with 152k! :blink: We have sent this last 94k count sample to the hospital path lab also, not trusting the in house machine on platelets so much (although my doc says it is only with the platelets it seems to have problems - often with people on the lower end of the norm scales). We also asked for a peripheral smear to be done again.

If I am lucky, it will come back up above 100k again, and if the smear looks normal, we will just continue to monitor it. Between having IBS (similar to IBD) and fibromyalgia, and considerable stress, I think the doctor will say some suppression of the platelets is to be expected. In that case it would shift from an ITP dx. to one of Pseudothrombocytopenia. And that I can certainly live with, and we'll just monitor things with CBC's as we have been every 2-3 months or so.

Thanks for your comment :)

PS: How does one create a post "signature" here? I have looked at profile editing and cannot seem to find where to do that. :blush:

DRT
14 Feb 2010 12:59
It just does my heart good to hear he is doing a lot better! This is a long road for him and I hope there aren't many pot holes in it!

Thank you for keeping us updated Sandi!
14 Feb 2010 12:12
DRT I don't think you have to apologize for anything. You have a legitimate concern/questions.

From what I gather your count has been 150-170K and then you had a 94K - right? Was that one time? Was a count done after that 94K one, if so what was it?

When I was in "remission" for 8+ years with a count that went between 85K and 125K I only had a blood test once a year.

What I'd do is keep an eye on it. Maybe this has been normal for you all along and you just didn't know it. Also a platelet count is going to flucutate - ITP or no ITP.
  • circawdm
14 Feb 2010 11:49
It wasn't my intention to come here and sound so miserable and afraid of what my up and down platelet count is when so many of you have much more serious and diagnosed ITP and other things and are on medications, transfusions, etc. to prevent internal bleeding and much more serious medical emergencies.

Thanks for your reply. I was hoping someone (patient, doctor, or perhaps someone with a very similar clinical picture as mine) might suggest something else then, given all the exclusions of other causes for "lower than the normal range" platelet count, even though even I know at this point the only thing it has in common with ITP is the up and down platelet count. And of course the < 150k count thrombocytopenia diagnosis.

PDSA I thought, represents people with all kinds of issues that can cause an up and down (or simply up or simply down) platelet count, whether it is from the 120-150k range I have stayed in for the past year or so until recently when I dropped to 94k, or perhaps someone else with what had been diagnosed with simply idiopathic thrombocytopenia, without purpura or very low counts or the other common symptoms or blood test values that present with ITP.

If I should have put this under a broader section here in the discussion boards, I am sorry. It is my first time here. I'm just looking for possible answers, feedback, suggestions and support like alot of others here. Having had fibromyalgia for 15+ years has been no picnic (on disability in fact for it) and I am hoping that whatever is causing the platelet counts to be up and down, even in the very mildly low range, is associated with that and high stress, versus something very rare or undiscovered which would make my life have less quality than it does at this point.

Thanks for your reply.

DRT
  • tamar
14 Feb 2010 11:44
Welcome to the board and to PDSA. I think your doc is right that you have mild ITP, which typically is only treated if it causes symptoms. I think the occasional monitoring that you are doing is the appropriate response.

Keep in mind that there is a difference between a normal platelet count and a safe platelet count. Your count has stayed safe, so don't fret too much that it's not in the normal range.
  • freckles
14 Feb 2010 10:58
i would say that you seem to have some issues, but given that 94k is your lowest count, itp is not one of them.
  • gilly
14 Feb 2010 09:13
Replied by gilly on topic Infertility & ITP
Thank you Sandy.
As far as I know we don't have a problem with antibodies regarding fertility..

Thanks for replying :)
  • gilly
14 Feb 2010 09:11
Replied by gilly on topic Infertility & ITP
Thanks Julia, lovely to hear you have a adopted son. We have looked into adopting but they seem to only want to consider us if we are not currently on any IVF treatment as they say we cant focus properly on both.. we are considering starting IVF soon.

I feel that is a bit annoying because we are both 31 now and if we go through with IVF and it fails.., to then start the adoption process will mean its going to be quite a few years down the line before we have the possibility of having a child.

We had a positive PCT (post coital test) which (I think) indicates that I don't have a problem with antibodies attacking my husbands sperm..

My count this week was 16,000 - it usually ranges between 6-20,000 although sometimes it can go below 6,000.

I wasn't quite sure what your last sentence meant do you think you could explain it to me? "Im sure you could from an eptopic pregnancy but im not so sure if its just hyper stimulating the ovaries."

Thanks so much for replying, and I hope your ITP is under control at the moment :)

Gilly
  • CindyL
14 Feb 2010 08:44
Replied by CindyL on topic Steve a/k/a Gort (moved from old Forum)
Thanks for the update, Sandi! I'm glad to hear Steve's doing better. Could you please send me an address so that I can send him a card?
  • athos45
14 Feb 2010 07:04
Replied by athos45 on topic child age 5yrs with chronic i.t.p
What are your daughter's counts? Does she bleed or bruise easily?
14 Feb 2010 01:04
Replied by on topic No. of replies per page
Melinda wrote:

Yes it would be nice if it was wider - there is a lot of wasted gray space to the left.


Edited to add:

This is what is taking up the left side of the screen - really those 4 things are duplicates and can be found elsewhere.

Web Site Member Menu
Your Profile
Discussion Groups
List of Web Site Members
Logout


Ann wrote:

It's much better now it's wider too. Getting rid of that side menu makes all the difference.


We have the side menu again only there is more to it - why??

All of those main topics in purple on the left and the PDSA logo are at the top of the page - why must they take up 1/4 of the width of the page too?? :(


Another thing I noticed - there is a lot of wasted space on the right side of the page too, under the posters name. It says the poster's name, what type of boarder they are, then 5 cute little blocks that change color the more you post, thennumber of posts, that cute little line that fills up with green as you post more, then whether you are online or offline and Profile box to click on to see the profile of the poster [which you can already do by clicking on the poster's name] - then under all that, blank [wasted] space.
  • circawdm
14 Feb 2010 00:38
Hello,

I'm new here. Here's my situation as briefly as I can make it: I am 60 yr. old while male. Have had fibromyalgia 15+ yrs. and also general anxiety disorder for about 40 yrs. I have studied medicine 45 yrs. although did not become a doctor. No diseases other than the fibromyalgia. I don't have any symptoms of thrombocytopenia other than my platelet count, the past year or so has bounced monthly up and down form normal (150-170,000 range to as low recently of 94,000. My doctor and a hematologist have done all the possible blood studies including peripheral smear, cytometric flow study, RH panels, and auto immune tests, etc. Also an abdominal ultrasound to check spleen & liver. I take no meds that are known to cause a platelet drop in some people. No family history of it. The fibromyalgia and anxiety disorder are my main issues.

The very experienced and respected hospital pathologist who did the manual cytometric blood flow testing and report came back and implied the only thing he could think of, given all my other blood cells and sub-cell types are normal in size, number, color and count, was that I could have "idiopathic mild thrombocytopenia, due to chronic illness." Of course most people consider fibromyalgia an autoimmune disease or close to it anyhow. And the anxiety and high stress for 40+ years of course suppresses my immune system I know.

So without ANY symptoms of ITP like easy bruising, easy bleeding, prupura, etc., I and my doctor are just monitoring things monthly. I have NO fatigue or other symptoms of anemia or ITP. I have aches and pains I have had 15+ yrs. due to the fibromyalgia, and am very sedentary due to it. I am very deconditioned, but my heart is healthy and has been tested. I know being sedentary can cause some issues with ITP. I have mild venous insufficiency in my right leg, but the vascular surgeon said "No big deal for a sedentary 60 yr. old" and has me wearing 15-20 mild compression socks. That's it except for rosacea on my nose (mild and in remission now) and and also dental problems due to age and lazy about flossing etc. over time. Root canals! Anxiety producing for sure for me. Also money worries.

No family history of any blood disorders. Except for the off and on mildly below normal platelet count, all my lab work ups have been 100% normal, from reticulocyte studies to double stranded DNA antibody tests. I've had everything but a bone marrow biopsy, which both my GP of 25 yrs. and the hematologist said would be "overkill" given all my other tests and lacking other symptoms as well as probably normal and painful.

Any comments, questions, suggestions at all? :S I personally think stress and the fibromyalgia are causing this, as they have caused other things to be abnormal off and on over the years - the combination can give a person some very odd symptoms and affect their entire body, including muscles, organs, eyesight, blood and urine tests, etc.

I joined PDSA because even though I don't have this technically even all the time, I think it is a very worthwhile organization, and I want to help others, even if there is not much more than support and reassurance for me here. That can mean a great deal!! I am open to any questions or comments.

Happy Valentine's Day to all the women and men here, by the way. :)

Thanks very much for reading.

circawdm
  • Sandi
13 Feb 2010 16:58
Replied by Sandi on topic Promacta
Fran:

The drug is doing exactly what it is supposed to do. Counts do seem to bounce around for those who use Promacta.
  • FranL
13 Feb 2010 16:10
Replied by FranL on topic Promacta
Short term I LOVE Promacta. Absolutely no side effects to speak of. NONE! Which is a big switch from the dex pulse I used to do. Long term I'm not sure it will work for me...my counts are up and down a bit. 82.000 two weeks ago and 40,000 now. But I'm cautiously optimistic.
13 Feb 2010 15:56
Replied by on topic Painful bones
You mean how I'm feeling isn't normal?!
13 Feb 2010 15:53
Replied by on topic Record snow in Dallas-Ft Worth!
We moved up here from Texas in springtime - the boys got their taste of a "real" snow on Christmas Eve, when we had a blizzard [had to cook Christmas dinner in the fireplace, hot dogs] and we couldn't get out of our neighborhood for at least 7 days, can't remember how long it took us to shovel so we could just get out the door.

My family knows when you come in the door shoes/boots come off - no walking around with wet shoes :)

Enjoy it - I'm sure the girls have put away some good memories!
  • DebbieC
13 Feb 2010 11:58
Replied by DebbieC on topic child age 5yrs with chronic i.t.p
Good for you to keep looking for what can help your daughter. There is a list somewhere here of ITP doctors. Also a warning list of foods and drugs to avoid. A few people have been helped by the celiac diet. Have you read people's stories here? I am sure there is a local support group in Florida just not up to date on where. That might be a good support group for you. Also PDSA has booklets about different subjects that you might ask for. You are doing a good job in getting educated about this frustrating disorder. I teach preschool and one of my students got ITP before she started her three year old year and sill has it in Kindergarten now. It's hard to deal with in kids so young. She was doing pretty well but all these winter illnesses have caused her to go low again. Hopefully with the spring she will do better and your daughter too. Take care and good luck on your move. Have you thought about flying with low counts? People have some ideas about that and it probably would be good to ask your doctor too. Debbie
  • tacmom
13 Feb 2010 11:29
Replied by tacmom on topic Record snow in Dallas-Ft Worth!
40 inches! I can't even imagine!! We still have snow on the ground, surprisingly! Someone just drove by to take a picture of our snowman, lol! It will be a puddle by the end of the day, I'm sure. We're supposed to get up to 54 degrees today. But they're predicting maybe more snow tomorrow or later in the week! So bizarre! I do think I would get sick of "too much snow" though. It's no fun trying to keep our hardwood floors dry when the kids keep going in and out all day!
  • tacmom
13 Feb 2010 11:24
Replied by tacmom on topic Timothy-26K!!!
Glad to hear his count went up just a little bit from his first injection! :) Hope his 2nd injection brings him up even more! I know our dr kept going up until Caitlin was at 50 and then kept her at that dose until she dropped. It took her a full year and a half to get to get to the maximum dose. Timothy's max dose will probably be at the adult level of .10 mcg where Caitlin's was only .07 mcg. Even happier to hear that he isn't experiencing any side effects :)
  • Sandi
13 Feb 2010 10:30
Replied by Sandi on topic Steve a/k/a Gort (moved from old Forum)
I miss him too.
  • Sandi
13 Feb 2010 10:27
Replied by Sandi on topic Promacta ups and downs
Fran:

You seem to have come a long way from a few weeks ago. That is saying something! I'd consider this a success.
  • FranL
13 Feb 2010 08:06
Promacta ups and downs was created by FranL
Counts done every two weeks. Pre treatment with Promacta 20,000
then 98,000
then 72,000
then 68,000
then 82,000
now 40,000

So I'm not sure what to think. I am feeling absolutely fabulous. No side effects at all and great energy and sleeping fine and good attitude. Just anxious to see where this drug goes...up and down....settling...failing... will see I guess.
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