Looking for new plan

Most of you know my story and everything I've been though.

Well went for CBC yesterday and still waiting on counts. Last week 14k, back on Pred 25mg was on 20mg and still on Promacta 75mg.

Nurse called first thing this morning and my doctor is on leave and wants me to see her fill in next week. She has been going over my labs for the last couple of months. Nurse said she wants to come up with a new plan???????

Well since I've tried most of everything in the book.....

LOST!!!!!

Well hey...it must be 14k month! Me too.
I hereby decree that 14k is the new normal!

My new plan (since a couple of years ago) is to not sweat low numbers, relax, and enjoy life.
Hang in there.


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Amber, you are often in my thoughts and prayers. You have been through so much, for so little gain.

I especially thought of you when I replied to Sandi's most recent post on "New Articles Posted Here".
pdsa.org/forum-sp-534/6-general-itp-discussion/16141-new-articles-posted-here-update-10-10-14.html?start=80#44343
It is a longshot, but it appears to be virtually risk-free: there is a nutritional supplement called n-acetylglucosamine - N-A-G for short - that MAY be helpful with some cases of ITP that do not respond to splenectomy. I cannot find it in stores in Atlanta, but it is readily available online, such as this:
www.luckyvitamin.com/p-17272-jarrow-formulas-nag-n-acetyl-glucosamine-700-mg-120-capsules
(also on Amazon, and Vitamin Shoppe carries it only online). Note that it is shellfish-based, in case you have allergies.

Have you been tested for everything you can be tested for? H-pylori, Lymes, etc.?

Have you tried a strict gluten-free diet?

With all that your body has been put through, I would exhaust all of the gentler remedies before moving on to the next high-powered drug.

Yes I have been tested for everything under the sun.....

Just got back from getting another CBC (since the one from yesterday, the lab said it is clumping, which it has done before) either way did it in blue top. The last time they did it in blue top numbers came out higher.

Almost everything I am in taking into my body is organic now.

Don't want anymore RX's want to get off all of it. I can tell my counts are higher than last week since the bruise came and left really fast from cbc last week.

The part about clumping is interesting because the study Sandi posted referred to a certain antibody AN51, that caused platelets to aggregate and later be removed by the liver (not by the spleen!). Your situation sounds consistent with this phenomenon.

The supplement I mentioned specifically reduces that kind of clumping. In fact, it is used routinely to reduce clumping in donated platelets to improve shelf life. It is a specific form of glucosamine, and has no known side effects.

I've had two CBC in the last two days ($74 for the CBC's and 80 miles round trip). Yet still no numbers?????????? I feel fine just mad!!! I AM SO OVER ITP (DONE)!!!

No numbers because clumping?

The first one yes, the second one was taken in blue top (they ordered that way). And yes still no numbers, nurse called twice (first time to make sure I went and second one to tell me still no labs in).

Then I have to see the other doctor on Thursday (more $$$$ $150-$200) plus they said for me to go back to Labcorp to get a CBC on Wednesday????

I am thinking of just making them do it when I get there but yet more $$$$........

I don't have a money tree and just want to cry.... damn! too late.....

Amber I know I've asked this many times.

At 14 are you actively bleeding? because if not I would tell them no. Literally say unless your going to pay for it I'm taking a week off!


I was so hoping that you would find that one treatment that would at least bring your counts up to a point of giving you a break!

They are supposed to use the purple top (EDTA).

I used to have clumping really bad and couldn't get readings even with the EDTA. I finally stopped having labs sent out and got the instant counts in the doctor's office. That solved the problem. I had to have special approval by my insurance company because they wanted me to use their lab. It just sat too long and clumped.

I'm with Julia on this one.

I took this week off, nurse called Monday to say the blue to came back 70k.

I have an appointment with the PA next Thursday just don't know if I should go to lab day before or get charged more for in house. Plus I have to pay the PA also.

I wasn't bleeding other than my normal I do when counts drop (period starts up even though I'm on non stop BC).

Hi Amber,

I haven't been on for a while (still wrestling with therapy and my shoulder), but I agree with Jack and Winnifred. Sometimes we have to tell the doctor's "NO" and do what we think is right. Jack has been doing just fine. The doctors do not pay out bills!

Good luck to you,
Dee Dee

It's possible that your counts could show up lower than they actually are due to clumping.

I think I'd pay the extra and get it done in office, but try to switch to bi-monthly counts.

www.priory.com/med/Case%20Presentation.htm

107k dropping Pred by 2.5mg (22.5mg total dose now). Since I've had breathing issues and get winded very easy, sent for x-ray. She said I sounded fine but since my medications can cause URI better be safe than sorry. Also added some labs on with the other issues I'm having. The x-ray was done STAT so if I don't hear from her by tomorrow (good news) but she should already have it in hand. The new labs will take some time, so tomorrow or Monday I'm thinking.

(I went ahead and did everything today since charity care runs out tomorrow but did get the last thing I needed and will fax in AM).

Still trying to catch my breath from today.... But glad to be home and cooling off...

HELLO AMBER,

my sister has a very similar case to yours, i think we can help each other out.

not sure if you remember but she got her spleen taken out around the same time you did, and still having multiple problems arise.

Please contact me Licata24@aol.com

thank you

vincenzo

120k no change in medications, pred 22.5mg and Promacta. Doing a very slow taper and re check two - three weeks.

Amber,

I'm glad that your platelets are starting to stabilize. Hopefully, this will be for a long
time! Good luck to you.

Dee Dee

First count 12k then second 14k??? ( last count before thanksgiving was 120k) Could be coming down with something since its that time of year and everyone seems sick. IVIG's for the next 3days at the hospital infusion center and I have enough vacation time to cover it at work with a little leftover. Been dealing with the same headache from earlier, now my left arm/hand is bruised. I will have them leave my I.V in since my veins are horrible, so I'll take my last real shower soon.

Doctor really doesn't know what else to do. We don't want to up the steroids since I'm having lots of side effects. But we did talk about upping the Promacta to 100mg (I think it was 100mg or 125mg) either way it is the top dose you can give to a person. We are but nervous about tappering the steroids, since last time that didn't go so well.

Amber, sorry to hear that your platelets are back down. Sure hope you get your symptoms under control (remember, the symptoms are what's really important). Like you mentioned, you could be coming down with something. Try to get some rest when you can. It sucks when those veins get so bad. I will pray that you will feel better soon.

Dee Dee

Feeling better now earlier today not so much. Last treatment yesterday and still bruising some and sore. Tylenol has become by bff these days. How long does it take to kick in? I've read days to weeks?

Amber, sometimes I've had IVIG and it didn't seem to kick in. Then my Hemo doctor, Dr. David Park, gave me a "slow drip" IVIG--over 24 hours (he learned this from Dr. Howard Liebman). It really did kick in with just one time done with the slow drip. Maybe your doctor can talk to some other hematologists to find out.

Good luck to you and hope you feel better soon. Also, if you can get your symptoms down, that would help a lot and you wouldn't have to worry so much. Remember, Jack gets by with his platelets between 14 to 20.

Dee Dee

Last week 134k and this week 54k, still on 22.5mg pred/Promacta 75 Mg. Re check New Years Eve

Are you still clumping? That could account for the numbers changing so much.

Something as simple as the tech not shaking the vial enough? or getting it into the centrifuge on time?

Also they need to start counting for you manually and never use a machine! Manual count can pick up clumping where as the machine doesn't always.

The following link is of the different collection tubes and which is best for which.

www.austincc.edu/mlt/phb_tubes

No not clumping, they run in house while I wait, blue and purple top. Bruising started Christmas day and more popping up, gums bleed this morning. So I know I'm back down some just don't know where. She talked about upping Promacta, I was going to ask about Cellcept, Imuran? Wanted to know what she thought but I just want to get off this pred hair falling out worse than every and I'm getting aggressive (had to take 2mg of Xanax at work then other day, I've been having to do a job of two people) .

I know what you mean, Amber. Prednisone isn't for everyone. I couldn't sleep the whole time I was on Prednisone and my hair was falling out, too. I'd be careful about Imuran unless you have really strong lungs. I've heard a lot of people who have had lung damage from this medication. Do you think you were stressed from the holidays and this started bringing down your platelets? Sometimes this is what happens.

Try to stay strong and positive and take one day at a time. And, try to watch what you are eating and drinking to see if this will help. I will say some prays for you and hopefully, you will start feeling better soon.

Dee Dee

Imuran and CellCept can both cause hair loss. I've been on both and did have problems with my hair. I've been on Prednisone for many years and have not lost any hair from it. Sometimes the problem is that the hair breaks close to the scalp and does not actually fall out. There are vitamins and shampoos that can help with that.

Everyone is different.

I am age 61.5, take a gram of generic Cellcept daily, and have had no hair loss at all.
Heck, two weeks ago I had 13 inches of my hair cut off....long hair just got to be a hassle again.

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Jack, you are lucky with all that hair!! I've had problems for years. But, it did get worse for me with Prednisone. Now I just wear a really pretty real hair wig (very nice style and didn't cost a lot)--except when I go to the gym or go riding. Then, I wear a baseball cap or something similar. Our health is more important than the amount of hair we have; and, there are ways to deal with it.

Amber, your main concern should be about your health first. But I do agree with Sandy regarding some of the meds--especially Immuran (my girlfriend didn't do very well on this--caused some lung damage).

Hope you are doing well starting the New Year!

Dee Dee

Personally, I actually think Imuran and CellCept are pretty much the same. They are both strong immunosuppressants that can cause damage to the body. They both scare me more than long-term Prednisone does due to the risk of cancer, etc. I didn't take either one for a very long time, but for the time I did take it, neither one did anything helpful that I could notice.

My situation is different though. I didn't take them for ITP. I took them for Lupus inflammation that is destroying my joints and muscles. They didn't control the inflammation anyway. Prednisone is causing bone damage so it doesn't matter...damned if I do and damned if I don't. I also used Methotrexate for a year and a half which did cause lung damage, so taking another med with the same possible side effect scares me. My Rheumatologist keeps pushing them anyway.

My point is: it's a hard decision to make when deciding whether or not to take these drugs. For many years, I blew off the long-term side effects because I needed to function NOW. I wanted to be at my best NOW. Nine years later it has all caught up to me and I think I'm worse off than I would have been without them, but I can't know that for sure. I've had doctors push these drugs on me for years, many times I say no, but when I did agree to them, I was sorry that I did. Lung damage doesn't sound so bad until you try to carry a basket of laundry, take a short walk or just go shopping. You can't stay fit because you can barely walk on a treadmill or do anything to strengthen muscles.

My advice: Go with the least invasive treatment and use the smallest possible dose. Over time, they do get you. Don't forget to look at the big picture.

Sandy, I know what you mean. My friend took most of the same drugs that you did for her RA. Now they say that she has emphysema. And, they are still pushing the drugs for her RA. She is in a dilemma at times because if she does what the doctor's want, she ends up with her lungs getting worse. I've tried to steer in our direction (our forum) so that she can she what is happening with some of these drugs. She is not the type of person to do research--and I'm trying to push her to do so. She cannot exercise or walk too far. She tries to watch her grandkids for her daughter, but sometimes it is too much for her. Sometimes she is afraid to go in public where there are a lot of people because she might get sick again.

I, too, think the drugs have made her worse. She also had breast implants at one time until they started leaking. I think this might have brought on her RA.