Happy rebirthday, Laura!! I'm so glad you got to take some time out and have a nice day...

It turns out that we made plans to go to a German bier hall with friends on my rebirthday, so it looks as though I'll be celebrating with sausages, haha!

This summer is mostly taken up with boat renovations (we're building our new bedroom and taking it all down to the hull so it's LOTS of work on top of our fulltime jobs), so we're bookending the summer with two short, cheap holidays. So we did an 11 day roadtrip through France at Easter, and in September we're flying to Hungary for a week on my in-laws airmiles for our anniversary. :)

I still don't know. I've still got another month of hormone cold turkey and continuous hot flashes before I see the new (and good!) gynae/endocrine Prof for a barrage of blood tests and scans. So I've got high hopes that they will be able to at least diagnose what's going on from there and start to decide on treatment.

This sounds like a really good solution - a wonderful GP to organise all the bloodwork, and the experts on email to analyse and answer questions. I've got a GREAT post-transplant nurse that I can email at any time with any question (any!!) and it really makes a huge difference.

Oh, and Marlene mentioned B12 and nutrional yeast - see if you can buy some at your local health food store. I'm neither vegan nor B12 deficient but I love the stuff. It looks like fish food but tastes kinda cheesy and it's so tasty! (Honest, even my husband likes it). I sprinkle it on eggs and over pasta like parmesan, but others even cook it up into fake cheese whiz and stuff online...

Hit the little blue button with the "s on each post you want to quote (it'll turn orange). Then at the bottom of the page click the "Post Reply" button and all the marked posts will be waiting for you. ;) (yeah I totally missed this functionality for the first year I was here, too!)

Well that't interesting about your brother.....Celiac does run in families. Thinking was that those with Irish decent were more likely to have problems with Celiac. However, more varied cultural backgrounds seem to affected also. There are lots of false negatives when testing for gluten/Celiac and many go for long time before damage sets in. Here's a link with a pretty good list on Gluten/lactose foods. It's from an Autism site but still applies.

http://www.tacanow.org/family-resour...ces-of-gluten/

Also, you should find compounding pharmacy for your meds. Check with your insurance to see what they pay and if your doc needs to write scrip specific for it. Life Extension has a mail order compounding pharmacy with some pretty good rates. You should be able to find one or two in your area also. Just google compound pharmacies.

I know all of this is a pain in the behind but it can really help you figure out how to get this monster under control.

Here's gluten/lactose free probiotic. Jarrow is very reputable brand. http://www.jarrow.com/product/535/Ja..._Allergen_Free

I'll keep an eye out for other resources.

are there other ways to get platelets? my body isn't accepting single donar platelet transfusions?

You should ask your doctors to request HLA-matched platelets for you. This is the next step up after single donor platelets fail. They're expensive and difficult to get, but they WORK.

You can also find 8 to 10 of your closest friends in the area and see if they'll get tested to find out if they are a match for you. If they are, then you can use them as your source. It takes a bit of coordination....I think they need to donate two days before you'll need platelets. You then can set up a schedule for ongoing donations.

Friends donating platelets......
 

They make the process so difficult here in South New Jersey--the locations to donate are almost 2 hours away, and since we are a resort area, noboby wants to travel in the summer. I've had friends offer to donate just on my behalf, not even directly, and it was a HUGE deal! Never happened...they need a "platelet -mobile" or something!
Then, I have a friend in North Jersey, who donates and gets $25 gas cards!

Oh, and the Phila Red Cross Blood Bank workers are on strike...
I've just been told the platelets I need tomorrow aren't available until Friday, most likely....unreal........

We have been spoiled living in the Washington DC area. Even so, I don't think anyone really wants to do HLA matching for platelets. It's out of the norm and more work is involved. And heaven forbid you request "fresh" blood products because they'll last longer. They look at you like you have a third eye.

We often think of where we'd like live when we retire and now one of the criteria is to be close to a major medical center!!!!!

How can blood bank workers be on strike? Geez. I hope you get your platelets soon!

Deb

I heard from Mayo. They left a message on the phone that I was positive for ITP. That is all I know...don't know a plan or anything. According to Dana Farber, my BMB looked good minus low on mega. I did allow Mayo to do their BMB today...trying not to step on toes...My PLT count today was 93. A week ago it was 95. So at least it is stable....but now what...I am back in Minnesota. Got back late last night. Still waiting to get off narcotics post incision dehiscement so I can get started on that list. Laura

Hi Laura,

Sorry to hear about the ITP but at least it's better than a relapse. Maybe your spleen has been sensitised. My brother was diagnosed as ITP but then it turned out to be very mild Lupus which only plays up occasionally. BTW I think I missed something somewhere and I don't want to be nosey BUT how did you get the wound that reopened?

Regards

ITP ugh...Well the prednisone is taking care of that for now but you'll need to get off of it at some point soon. Maybe they'll give you a course of Rituxan however, before that, I'd like to see them definitively (if it's possible) rule out lupus because if it's a lupus flare, you may not need further treatment and can come of the pred until another flare happens.

It may not be lupus at all, but I did wonder about it earlier as did you with the ssa/ro antibody (highly implicated in lupus) and you'll want to get the right treatment.

The comment before mine was interesting in that her brother's ITP diagnosis was changed to a mild case of lupus.

Talk soon,
Nicole

Hi Nicole,
Thanks for the information. I agree about the lupus thing. I have yet to hear another word in regards to that high level even though I have been told they are checking on it. The first opening is in August for rheumatology so I should call over and work my magic on getting a sooner apt! I agree about that comment as well! I wonder if Lupus could be the cause for my severe fatigue??? That is still the big mystery...

I have no plan outlined for the Prednisone or nothing...So I just continue on labs M/Th and 60 mg Prednisone daily. The past few days I have had severe HA, which I usually get while on Prednisone because my BP usual skyrockets. Also my sugars go crazy. So I got an apt with my primary who hooked me up with Norvasc and insulin today. So I am thankful that I can get these high BP under control to get rid of the nasty HA I have had for about 2 days straight.

In talking with Dana Farber, he agrees with the dx of ITP and thinks I should try weaning off the Prednisone sooner rather than later. He also checks in frequently to see how the diarrhea is going! So nice of him.

Laura

An interesting side note....Mayo claims they tested me for ITP and it came back positive. DF states there is no test and it is just dx by everything else being ruled out....

I agree! SO much better than relapse!!! Very interesting about the ITP turned Lupus. Thanks for the information.

I didn't post too much about the wound. I had a surgery about four weeks ago, a few weeks later it dehisced open and had to get resutured. And then it dehisced again. Doesn't help with the Prednisone! But things are healing much better.

Laura

Thanks for the information Marlene. Mayo has its own compounding pharmacy so I can utilize that if need be. At this point I am willing to do pretty much anything to have my life back!!

Thanks again, Laura

I am having an awful time. I am assuming it is from the Prednisone...

On and off I have a pain/tightness in my jaw/mouth bones, severe bone pain in the lower legs, ankle/hand/wrist joint pain. On and off I feel like I can't catch my breath/SOB/major fluid overloaded. It is more uncomfortable than anything. I still have issues with severe headaches. Basically just uncomfortable.

I also had that red rash tonight for hours...covered my legs, arms, feet...well the good majority of me....

I am sure it is nothing but will be calling in the am...and will be asking for Lasix.

I also have some bruising...not sure if it is because I worked out in the yard today and over did it...or not...so labs tomorrow too...

While I understand the need for Prednisone, I am miserable at the same time and want to stop it soon.

Is it really that common to get ITP post BMT as they claim? Or is it a flux? Any theories out there in regards to this?

Laura

prednisone
 

Hello Laura,
I am so sorry you are having to go through all this. I have followed your story and I appreciate you sharing it. I just wanted to say that tolerating high doses of Prednisone can be very difficult. I tried it at 60mg/day for less than 2 weeks and was so glad that I did not have to continue it. As you know it can elevate your BP, blood sugar, cause insomnia and other mood swings, cause easy bruising, weight gain, etc, etc. I hope that they can begin tapering your dose soon. Before I took a trial of Prednisone, I read a book called "Coping with Prednisone" by Eugenia Zukerman which I thought was quite helpful. If you must stay on Prednisone, I recommend reading it. I think that they will begin tapering it to the lowest dose that will keep your platelets up and that it will be a short course. Good Luck!

The 2007 edition of Coping with Prednisone, by Eugenia Zukerman and Julie Ingelfinger, is available from amazon.com in paperback.

Link to the amazon.com page

My plts yesterday were 118. So today they dropped me off to 40 mg daily of Predniaone. Laura

Glad to read your pred dose can be reduced. I can only imagine how rough you must be feeling. Hopefully the platelets will keep rising and your next dose reduction will be soon.
Curious ~ has the pred helped your gut and/or fatigue?

Go on Laura.
Nice to hear something good

I didn't mean to disapear. I am just very, very sick. And having a hard time figure it out. Not 100 percent sure...but it seems my body is fighting cgvhd in multiple places....and Prednisone isn't cutting it...its a big mess and I feel very sick....

I will update when I know more...

Laura

Oh Laura, I'm so sorry you are having to go through this. It just isn't fair! I'm sending lots of healing thoughts your way. Love and hugs, Karen

Oh geez Laura this is the last thing you need right now!! I'm thinking of you, please keep us updated when you can.

Its horrible. Nick is also fighting cgvhd in eyes, gut, liver, skin and who knows what else. He cant have Pred or immunosupression because of the PML.
I really feel for you.
Starz