New to this forum

Hi all,

I'm new to this forum. I browsed the discussion for a few days before joining in. I just wanna say it is a very informative forum.

I've been an ITP patient since i was a kid and have had ups and downs.

I'm from Malaysia and am wondering if there's any other members from the same country.

Hello. I am new to the forum also, and yes it has been a very informative place to visit. I am new also to ITP and I am sure you have alot of experience you can share here...so don't hesitate to do so, it has been so helpful to me.

I am in Florida.
Denise

Hi Denise,

I've had ups and downs. I joined this discussion to find new treatment, or possible new treatment.

I go for my first doctor appt Friday...since diagnosis in the hosp a few wks ago....I am trying to make me a list of questions for the doctor.....my counts today were 108,000, and I am on 65 mg of prednisone.....

What kinda question you wanna ask?

I would like to ask if there are any foods that would be better or good to eat to help with ITP.
Other questions:
Is it necessary to have a bone marrow biopsy to eliminate other things, or will the blood tests do that? ( my dad and sister both died from blood/bone cancer...multiple myeloma, in the last year, and it haunts me)

If something happens when you are out somewhere and there is an emergency with bleeding , what can be done to stop the bleeding, or is there something to take or carry with you?

What can i do to help eliminate some of the side effects of prednisone?

Can antibiotics that I took for an infection after a tooth extraction have caused any of this?

I have a cold, runny nose etc, is there some over the counter stuff i should avoid? Besides aspirin...
Those are just a few I have written down.......

Hi Denise, I've tried different kind of food, but none help in the platelet count.

I've never had any severe bleeding other than nose bleed.

For the prednisone, I was given calcium to take care of the bone issue, but the other side effects such as moon face, I guess you can't do much about it.

For me, none of the antibiotics has any side effects.

I just take PCM or tylenol. That's about it. This is for cold, flu, etc.

Denise, this site can answer a lot of your questions.

For things to avoid taking, go to top menu item for "About ITP" and select "Warnings".

For foods and diet options, see "Treatments" then select "Complimentary".

As for the bone marrow test, if you're not having symptoms that indicate looking for additional causes and you respond to treatment, most hemos don't put patients through what can be a painful procedure as it probably won't change the treatment course.

If you sign-up as a member you'll recieve monthly e-newsletters will also give some interesting tidbits: www.pdsa.org/itp-products-publications/e-news.html

I'd suggest purchasing the the 2009 Fall Platelet News which highlights Barbara Pruitt who was diagnosed with ITP at age 4, 48 years ago. Other than a brief remission at age 6 following a splenectomy, her platelet counts have run on the extreme low side with frequent bleeding ever since. She provides a couple of pages of tips on living with ITP, plus she gave a list of items she always keeps with her, an ITP Care Kit:
• Mesh “filet glove”, it prevents cuts when using a knife
• “Blood stop” from CVS
• NasalCEASE, also from CVS- this is to stop a persistent nosebleed
• Her doctor’s business card with address and phone number
• Ziploc, or similar zip-up bags to make quick ice packs
• Sensi-wrap gauze to hold ice packs in place
• Handle wraps; these can prevent bruises from plastic grocery bags
• A Medical ID, either bracelet, necklace or similar, available through a link on the PDSA Web site
• ICE in your cell phone; EMS workers will know to look for ICE — In Case of Emergency — so put this in your phone with the number of your emergency contact
• Ayr Nasal Gel, a saline gel to lubricate inside the nose and prevent nosebleeds (Ocean is another brand
• Traumeel – analgesic, antiinflammatory gel/lotion heals bruises
• Cortisone gel/cream for itches, so scratching won’t leave bruises
• Band-Aids or other adhesive bandages

wow, thanks for the wealth of information you just posted!!!!!! I really appreciate you taking the time to do that!
Denise

Is it necessary to have a bone marrow biopsy to eliminate other things, or will the blood tests do that? ( my dad and sister both died from blood/bone cancer...multiple myeloma, in the last year, and it haunts me)

No, a bone marrow biopsy is not necessary to diagnose ITP. It is recommended for those over 60 and those considering splenectomy. If you'd prefer it for peace of mind, ask your doctor.

If something happens when you are out somewhere and there is an emergency with bleeding , what can be done to stop the bleeding, or is there something to take or carry with you?

Very few people have emergency bleeding other than noses. A serious bleed would be a brain bleed or GI bleed and if that happens (very rare), there in nothing you could do except get to the hospital. If you'd get a cut or something, apply pressure.

What can i do to help eliminate some of the side effects of prednisone?

I wish! You can eliminate salt and sugar to help weight gain and water retention.

Can antibiotics that I took for an infection after a tooth extraction have caused any of this?

Yes. Any drug has the potential to trigger ITP. No way to know for sure, and nothing you can do about it.

I have a cold, runny nose etc, is there some over the counter stuff i should avoid? Besides aspirin...

Some people avoid ibuprofen, others don't feel it's necessary.

Whoa...lots of info. I sure do benefit from the reply as well.

yes, arent these boards great??????????????????

empty"/\n\nhi everyone

New here, hope im made welcome

The welcome wagon is here! Welcome!