Welcome, Guest
Username: Password: Remember me

TOPIC: March 2015, life changed.

March 2015, life changed. 3 years 10 months ago #51220

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
There are no tried and true supplements for ITP. You could have Vitamin levels tested because many of us have low levels of some of them. If you are deficient, you would have to take that particular Vitamin.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51222

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
that's why i said, might work.

because everything i've been reading has been contradictory.
this works. no, this doesn't work.
this treatment is good. no, it's not good, it makes things worse.
some people say this three day fast resets the immune system. others say it does no good.
one source says root veggies are good. another source says nope.

everything is contradictory.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51224

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
It's all trial and error, Rhoda. What might work for one person may not work for another. I'm sure some claims of success can be chalked up to coincidence. You just have to try different things and see what happens.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51225

  • Melinda
  • Melinda's Avatar
Rhoda the only thing certain about ITP is that there is nothing certain about ITP.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51404

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
i've been 130, 131 for the past 4 or 5 weeks. on prednisone 5 mg. i was hoping that i'd be able to drop down today after lab work.
no, today, the counts are 86. stay on 5. redraw in 2 wks.

so i've been trying to think what i've done differently the past 2 weeks.
i've started taking cinnamon capsules.
i've had more mountain dew in the past 2 wks than i've had in quite awhile. like 20 ounces nearly every day.
and this weekend, i've also eaten more junk food again. (but that goes hand in hand with all the sugar in the mountain dew.

also, the cycle is coming around again.

time to cut back on the soda.
i guess i'll cut out the cinnamon capsules too.
see what happens in 2 wks time.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51405

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
Rhoda:

It could just be that counts are falling as the Prednisone is tapered. It happens all the time. Sometimes counts will also rise when you don't expect them to. That's just part of ITP and not necessarily anything that you are doing or not doing.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51406

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
that's just it.
the prednisone has not been tapered. i've been on 5 mg for about 5 weeks now.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51408

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
That doesn't matter. There is no guarantee that counts will hold at a certain dose. If it will make you fell better, cut out the Mt. Dew. It's not good for you anyway. :)

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51410

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5

Sandi wrote: If it will make you fell better, cut out the Mt. Dew. It's not good for you anyway. :)

snort.

yeah, i know. craving all that sugar is a side effect of the prednisone. but like i told the sleep dr, i can't blame everything on the prednisone. it's what i've got to live with, and it's not likely to change any time soon, so there comes a point in time that i have to quit blaming weight gain on prednisone, and just do something about it.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 10 months ago #51411

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
Rhoda:

Salt and sugar should be avoided while on Prednisone. Salt can add to water retention and sugar can cause blood sugar to rise. Some people even get steroid-induced diabetes. There is a legitimate reason to stop the Mt. Dew.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 6 months ago #53046

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
i am freaking tired of this seesaw chasing numbers.
numbers go down, prednisone goes up. numbers go up, prednisone goes down.


last week they were 35, he wanted me to go back up to 10 mg prednisone. i asked if i couldn't ride it out one more week at 2.5 mg. ok, he left me do that.

so today, they are 30. i was tickled. that's the slowest they've dropped in a long time. normally they drop like a lead brick. i was so hoping to be able to continue to ride it out another week on 2.5 mg. nope. not an option this week. go back up to 20 mg.

we're doing nothing but chasing numbers. i really really want to ride it out one more week, but i can't. i guess he knows what he's doing, and i'll listen, but i'm just irritated.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 6 months ago #53050

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
I spent 6 months on prednisone chasing counts and then I got a new doctor. I am on promacta and after 4 days I reacted and have been reducing my dose since then. I am really angry that I wasted the first few months on horrid prednisone going up and down. Get a new doctor.
Diagnosed Jan 2015 at age 50 with 13,000.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 6 months ago #53056

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
Rhoda - when you get to a point when you are not happy with your current method of treatment, it's okay to question it and ask to try something else. If your doctor will not work with you, get a new one. Many doctors would not have forced you to raise your Prednisone dose with a count of 30k. You do have options here and the choices are yours.
The following user(s) said Thank You: Melinda

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 6 months ago #53057

  • Melinda
  • Melinda's Avatar
I always tell myself it is my body.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53187

  • cindyfrye
  • Offline
  • Posts: 62
  • Thank you received: 5
I had count of 186 Jan 7 but Feb 18 I had 7. Started Pred. Yesterday but count today after 80 mg was 3. Am hoping it starts working. Last instance of ITP was 2006.

Had ivig. Winrho, and ratuxin. No Prednisone since I am dibetic.

This is a disease with a lot of questions and few answers.

Side effects are nasty. Life gets back to normal but some days are.like a cat on a ceiling. Just got a toe or two hanging on.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53190

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5

cindyfrye wrote: some days are.like a cat on a ceiling. Just got a toe or two hanging on.

ok, that's just funny.
i've got to remember that. i can use it!

thanks B)

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53304

  • cindyfrye
  • Offline
  • Posts: 62
  • Thank you received: 5
Calmness is the traight I most admire about my Hemo. Very close second is his listening skills and his ability to explain (what can be explained) about this disease. He recommends treatments but is open to my comments about my tolerances or lack there of.


I also have a good GP to help when side effects and secondary infections arrise.

These life changing out of the blue incidents are hard to take. I hope you have good stress relief plans and use them. My best one ar my two Rescued ShihTzu's. Many a say I know they rescued me a hundredfold for what I did for them.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53498

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
does anybody have any experience with lasix and itp?
googling makes me think that it could be a cause of thrombocytopenia for some people.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53499

  • mrsb04
  • Offline
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1247
  • Karma: 7
  • Thank you received: 304
Rhoda..according to medicines.org.uk there is a 0.001% chance

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 5 months ago #53500

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
Any drug has the potential to cause thrombocytopenia. Some of the ITP treatments even list it.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 4 months ago #53685

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
i think maybe i made the dr a bit upset. not that i really care.
i more or less took matters into my own hands. i'm deciding how much prednisone i'm going to be taking.

96- 2.5 mg
42- 2.5 mg
35- agreed to let me stay on 2.5 mg
30- increase to 20 for 7 days
30- office visit, i understood him to say i could manage my own pred more, and to go ahead and start tapering down. might not be what he meant, but that's how i took it. so i decreased to 15 mg
45- 10 mg x 1 wk (first real period in a year's time)
16- no response from office, so i put myself up to 20 mg. it actually made me glad that he didn't call because he'd have tried to put me up to 40 or 60, and i had no desire to do it. i stayed on the 20 for 1 wk which brought my numbers up to 103. i also started Vit d3 5000 units daily, vit c 1000 mg daily, as well as probiotics. mom also got me on a kick of lemon water.
103- 15 mg x 2 days, then 10 mg for 5 days
100- today. started 5 mg, and i think that i'll stay on it for a few days, then go down to 2.5 mg for at least a week before redrawing. and then if all goes well, i'm off the pred. i've not been off pred since aug of 2015.

here's my thoughts right now.
i need to time the lab draws to be 5-7 days after pred dosage changes.
definitely continue the supplementation routine.

i'm actually feeling a bit hopeful right now.
its right at the year mark that i was dx. i'm feeling better, (minus the weight gain and prednisone). last year i'd finish the morning's work and sit down for lunch and i'd say, "i'm exhausted."
maybe i've turned the corner.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 3 years 4 months ago #53686

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
I hope so, Rhoda. If not, I'd say that you gave Prednisone a very fair chance and it will be time to move on to option 2, whatever that may be.

Good luck and keep us updated!

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55863

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
numbers have been ok for quite some time. up and down, but ok.

yesterday i decided i needed to have labs done, before my scheduled time. so i stopped on my way upstairs to work today. signed the records release so that i could go in and pull them off the system myself.

and about 45 min later, went in and checked.
and started laughing.
wasn't anything else to do, but laugh.
i knew they were going to be low, but i was expecting low in the teens.
3. a measly three!!! i laughed. here we go again!
and to think that i had been debating if i wanted to put myself up to 10, not do labs, and see if the petechia went away, or if i wanted to do labs and let him tell me what to do. (i've done it before, he doesn't know about it yet. and it has worked for me in the past)
i laughed.

at my last office visit, i had told him i didn't want to go above 20 in pred.
but he wanted 40 today, and i agreed. after all, 3 is just a bit lower than i'm wanting it to be.

i still say the universe is trying to kill me.
currently on doxycycline and flagyl for lymes. (i'd venture to say thats what dropped the numbers)
and my cat bit me about 2 days after i started the doxy and flagyl.
(wonder if i had increased my pred to 5 mg at that time, if maybe i'd have prevented the drop? guess we won't ever know. it makes sense to me, increased stress dt possible infection, adrenals not able to keep up...)

anyways,
i just had to laugh.
now i gotta work myself back down to a manageable pred level. that tapering nearly drives me insane until i get myself situated back at 2.5.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55866

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1386
  • Karma: 10
  • Thank you received: 190
Yea, with a record low number, I would have laughed too.

Let me see if I understand. You are sticking with Pred as a treatment because you do well with it? Can taper down to a low dose and maintain good quality of life with it?

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55871

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
i do ok on 2.5 and 5. mostly.
the 2.5 tends to let me go lower, quicker, so i might try 2 wks on 2.5 and 1 wk on 5.
i just want the lowest dosage i can go, all the time. and it shows.

but i guess the biggest reason that i haven't moved on to anything else is because then i have to admit to myself that i really do have an issue. and the doc hasn't pushed it at all. but, when i got the orders to go up again this time, he also said that he's going to be sending me info on nplate. so i'll do some more googling, and see what i can find.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55872

  • Sandi
  • Away
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2335
I basically stuck with Prednisone until I couldn't do it any more. On and off over an eight year period. There's nothing wrong with that if you can tolerate it. You'll know when you can't.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55883

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1386
  • Karma: 10
  • Thank you received: 190
Ok, thanks.

On a related note, when I took dexamethasone followed by PrevPac antibiotics the antibiotics apparently blocked the dex (by liver?) from working. According to drugs.com, antibiotics blocks the clearance of dex. When the PrevPac 10 day treatment was done, the dex seemed to start up where it left off.

You mentioned doxycycline antibiotic. Is it possible the doxycycline was blocking the Prednisone and that is how you got such a low count?

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 10 months ago #55884

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
prob the flagyl would be the more likely culprit.
i just spent some time googling side effects of both doxycycline and flagyl
thrombocytopenia apparently is a known side effect of flagyl.

labs get redrawn in the morning.
i'll see what happens.

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 9 months ago #56655

  • rhoda
  • Offline
  • Posts: 47
  • Thank you received: 5
i found an absolutely brilliant parody today.

www.facebook.com/ZDoggMD/videos/10154624753742095/
The following user(s) said Thank You: poseymint

Please Log in or Create an account to join the conversation.

March 2015, life changed. 2 years 9 months ago #56658

  • poseymint
  • Offline
  • Posts: 540
  • Karma: 1
  • Thank you received: 138
Thanks Rhoda for the video-- hilarious!! love it!

I stayed on prednisone tooo long when I was first diagnosed. That was the first year- tried then Rituxin Promacta etc. The third or fourth year I thought it wouldn't harm me if I stayed on 7.5mg and no higher. But my side effects got worse and worse the longer that I was on it, even at that lowish dose. Also it was foolish because prednisone can "silently" cause some very serious problems. After a year I found I had bone loss- I went from normal bone density to osteopenia. It can be hard to build that bone back once its gone. Doctors suggested I go on Fosamax but that stuff can cause bone death- it happened to a friend. Soooo... my point is prednisone or any of the treatments can cause more problems than just ITP- so please be careful with it.

I am on Nplate and it is my favorite treatment so far. I have almost no side effects and it keeps my counts in a safe range around 50K. I have to go into the clinic every week which takes about an hour to do labs and injection. But compared to the weight gain, high blood pressure, hair loss, anxiety, sugar/food cravings, and general insanity of prednisone- its so easy!

ps.I gained 30 lbs on prednisone- lost it all when I finally switched to Nplate. yay I feel so much better! good luck whatever you decide. Sounds like you're learning a lot about how your body responds to dose changes, diet changes, etc. Good for you! I think getting to know our immune system/body is an important part of the journey.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo