Diagnosed one month ago.

You did not list one major benefit. In the two weeks I was in the hospital, aside from the bone marrow aspiration, nobody looked at anything naked except my arm. I was really happy about that. At this age and weight, I have no desire to be naked. It's hard enough for my husband to look at this.
I hope I become as positive about this stuff as you are down the line. Surely you weren't this positive 40 days in, right? Or maybe you were. I don't know.
When I talked about the trip with doctor#2, he seemed fairly positive about it, but I don't know how he can look that far ahead. he's not a fortuneteller. The other doctor was noncommital. I see him this coming Thursday. I will bring it up with him as in "How can I make sure I get to go?"

Roberta,

For your trip, just go! If you are breathing and walking, go! If not, don't go. Enjoy those grand children!

Jeffrey

Roberta,

I agree both with Sandy and Jeffrey. Knowing what I know today, I would find a way to go--even if it meant slowing my taper. I don't always 100% agree with my doctors. I do the research and decide for myself what I think is best. And, my hemo respects me for that. It took a while, but he does. I may panic for a while if my platelets drop--but that is mainly because I have a lot of symptoms when they first drop. After a couple of weeks, the symptoms start doing better and I feel better. I do watch what I eat when they are low. You need to checkout the list of foods that can lower your platelets and make you bleed more.

I've been through the worst-case drop before and came out of it okay. I'm hoping that if they drop again, I can get things under control.

Good luck to you, and try not to worry too much.

You lost me. Why are we talking about nakedness?

I wouldn't say there are benefits to having ITP, but it can be a learning experience with some positive experiences. I just finished reading a group of PDSA Scholarship essays written by teenagers. All of them explained how ITP had affected their lives and how they put a positive spin on it for the better. Most of them had to quit playing sports which had been a very important part of their lives. Many of them were crushed. So they turned to music or volunteer work and found that they were excelling at things they never imagined they would or could. They had to go to school with puffy faces and bruises and side effects that other kids their age didn't understand. Many of them changed their dreams and career paths because of ITP, but they realized that they were stronger for it and they pushed harder because of it.

Okay, ha, I'll tell you where I was at 40 days in. I was a complete basket case. I'd had a few weekly Win-Rho treatments that were not working. Never gained a platelet. Counts were bouncing around between 8 and 20. I'd run to the Drs. office on my lunch hour, get the Win-Rho by IV push (they did it that way back then) and then fly back to work. I'd spend the rest of the day feeling like I had the flu and take a Tylenol.

After that, we moved to 60 mg's of Prednisone. My job was very fast paced with deadlines, so shaking was a common event anyway. But on Prednisone, I was sped up even faster. I couldn't speak a coherent sentence to save my life and had phone call after phone call all day. My vision was blurred and I couldn't see faxes. I became frustrated with the inability to do the job properly and my employer wasn't happy. I had piles of files and documents on my desk that had to be dealt with. I made mistakes that cost the company money. The stress level was through the roof. After work, I had three kids to come home to and my husband travels during the week. They all had activities to get to so I ran them around for hours. My goal was to keep life as normal as possible for everyone, even at my own expense, so I did. My head was spinning all the time.

Anyway, I would come here and vent and cry. I was barely hanging on. The people that were here at the time got me through it all and were more supportive than my own family who didn't get it. It wasn't their fault. If it hadn't been for those people, I don't know what I would have done because I was feeling quite useless and inadequate. It wasn't the ITP that was getting to me, it was the treatment that I couldn't cope with. I was taking myself far too seriously and in time, decided to spin myself around and try to find the humor. When I did, I saw that I had quite a few funny Pred Head stories and we still laugh about them today. We've had threads here before where people tell their Prednisone stories and they are good for a laugh.

I am forever grateful for the old timers that were here back then. Most of them do not come here anymore, but I do still keep in touch with some of them. When I actually looked around and saw what some people were struggling with, I was thankful that I was able to obtain normal counts and not have to go through some of the things that they were. One woman constantly had counts below 20 but also had serious blood clots and was on blood thinners. She managed that for years. Another woman (in her 60's) could never get counts above 30k and it's been that way for her for the past 12 years. Just recently, she started Promacta and for the first time in many, many years, has been able to maintain normal counts and finally have some medical procedures which had been impossible before this. Things have come a long way. Many refractory people are now using the TPO's and maintaining safe counts. I do see that as a benefit.

ITP does not have to stop your life and you are exactly on track with what to say to your doctor. "How can I make sure I get to go" is a very good way to state that. Ask him what count would be acceptable and just worry about that number. I don't know if you plan to ride anything, but just walking should be fine with at least 30k (unless he says a different number). As long as you feel fine, it shouldn't be much of a problem. Hopefully, he will be positive about it and he should be.

The nakedness-- you were listing the positive things about ITP.

Ah ha! So you were as bad as I was!! Only you seem to have been having a harder time than I because I am retired and don't have the same obligations. I am sure that added much to your difficulties.

Sandy,
In 2006, I was a member of the old ITP board and use to read all their stories, too. I will always remember the prednisone stories and how people had to start back over on Prednisone and their tapers.

And, I remember the beautiful picture you posted of you and your husband on your wedding day!! A really beautiful picture!! You were always an inspiration and the board was so comforting to come to. I didn't post back then, but I always came to read the stories

RHofm, your trip is easy to manage. You simply take a bottle of Prednisone with you and if petechiae appear you up the dose and carry on. When you start playing this game you think the treatments are hard and fast and you have to follow the rules but as you get more experienced you realise that there aren't any real rules (except don't stop pred suddenly as that can be dangerous) and you can up the dose and taper again as you like.

There are lots of treatment available. I've tried 7 different treatments. The last, Nplate, is working the best. And there's lots I didn't try, like rituxan, promacta, cyclosporine, danazol etc. Plenty for you to try if the count doesn't hold after prednisone.

Thanks very much for your input, Ann. I appreciate it very much that you took the time to help me. I know doctor #1 wants to go directly to promacta. I have it in my drawer as I did not take it because after two weeks I suddenly responded to whatever big time. Of course, I have dropped from a high of 342,000 to 233,000 in the past two weeks. Not encouraging. Doctor #2 prefers splenectomies but I see that as a last resort. I don't want two serious problems to deal with.

Great advice from Ann, if you have something that works like prednisone, you have rescue treatment in your pocket. Also Disney would be a good place to have a medical problem, you'd be taken care of before you hit the ground. And I don't remember if you have had any bleeding problems? If not, and no other major medical problems, then yes you could and many of us do walk around with 10k platelets.
Erica

I had the rash and blood in my nose, though not draining down. Major bruising where they put the blood pressure cuff on 10 times a day. Finally, a nurse told everyone to take it on my lower arm which did not bruise. That is the bleeding I had. '

On the Predisone bit-- I did not respond for two weeks. Most of the time I was below 4. So I don't see how predisone would rescue me. Likely it wouldn't do a damn thing for two weeks again! God, if I bled to death at Disney, my family could never go again!

Roberta, I agree with the other people encouraging you to just plan to go on your trip. I have always found a way to do the things I really want to. With my doctor we always have a plan B. predniisone has always been plan A for me and when my counts get below 50 we start talking about plan B. I have done rituxan and IVIG. Both work for me. Even though your counts are dropping and it initially took you a while to resond, you did respond to prednisone. A lot of people get no response. I agree with Ann, if your counts are low 2 weeks before the trip you can up your prednisone then and take some with you as well.

I hope you can work on your anxiety.. I feel like that would help you. Plus focus on your trip, imagine the fun you will have. at this point you are much more likely to have an anxiety attack there than have a bleeding problem.


My counts just went down from too high 434k to 198k. I'm not worried and will just wait and see what happens with the counts next week. I am planning a train trip to DC June 25 to see my daughter, I will find a way to go even with low counts. I once drove down there to pick up her cat with count of 17k and my dr was okay with it.

Keep coming here and talk about your fears... It is okay we have been through it too.

Okay, best thing about ITP is that no one has to see us naked. I'll second that.

Yes, I had a hard time for sure. But not because I was afraid that I couldn't do things because of counts or that I would bleed to death. That didn't bother me because nothing was going to stop me from doing what I wanted. I'm very stubborn that way. :evil: And I knew ITP wasn't going to kill me because I was able to get counts up. If counts can go up, there is no risk of bleeding or dying. I just hated the treatments. I was one of those people who said "I will never take Prednisone again." Famous last words. Now I fight my doctors to keep giving it to me. They do.

Anyway, the point is, people were here to help me with words of wisdom. I needed that. They kept reminding me that there was a light at the end of the tunnel and that I would eventually get off of the high doses. You learn to live one day at a time and stop worrying about tomorrow. ITP will control your life only if you let it.

Roberta,

You will be fine at Disney! My doctor at Cleveland agreed this week to not make me have IVGs at 4. He said if you have any bleeding seek urgent care and no motor cycles or contact sports. He then said have a great long weekend....so taking his advice I'm going to a BBQ, a Paw-jama party ( yes I am the crazy lady with her two little white dogs who has play dates with other small dogs and their owners), and going to taste of cincinnati. It has been a long almost 6 months spent stressing about this disease and I'm tired of it.

I have been very inspired by many people on here who are living great lives with itp. I'm going to be one of them. I started applying for new jobs and am ready to live as normally as possible even with low counts.....but hopefully we can work on getting them back up!

Sandi,


I am still pretty self conscious about all my bruises. I don't want people to think that I am in an abusive relationship. I'm hoping to get over that and wear shorts or go swimming.

Whenever I feel worried about something someone might think about my appearance or whatever, I remember-- nobody cares. Nobody is looking at you. If they happen to glance your way, they'll think, "What a lot of bruises. What am I going to have for dinner?" When I came out of the hospital, I was full of bruises, some 5-6 inches across. I have to say, I never did even think about what somebody else might think of them. Nobody cares. They are wrapped up in their own stuff.

Roberta,

I should look at it like that....maybe because I have been trained to look for bruises on kids and others ( im a special education teacher) as a mandatory reporter I'm always looking and analyzing....so I feel like others would be looking and analyzing as wel.

I don't like focusing on the trip because that creates huge stress for me, thinking about telling the kids that the trip we've planned for a year can't come about. I don't discuss it with them anymore. I don't want to get them cranked and then disappointed. I don't want to look forward to something that might not happen. I really don't think I could handle going if I had like 10,000 platelets. to get myself on a ship that will be gone 4 days and have that rash come? We are taking them 3 days to Disney and then 4 on a Disney Cruise. That's the plan anyway. Ship doctors are not equipped to do much. I remember when my husband came down with very bad TMJ on day one of a week cruise. He could barely open his mouth. The ship's doctor had never heard of TMJ and sold him $50 worth of naproxen which I had in my purse! No muscle relaxant, no nothing.

Valerie, right?
I taught English for 16 1/2 years. Mostly British Lit to seniors but also remedial reading to slow Freshmen and other subjects as well.

Just remember of how little importance we are to strangers and wear your shorts and go swimming. Why all the bruises? Are you low right now? What are you taking?

Yay a fellow teacher! My levels are 4 right now. There was some confusion with Nplate last week ( I'm dealing with 2 docs one specialist and one who is just special. Well the special one did not give me Nplate last week and the specialist thinks that is why I crashed because I was doing well the past month. He did say they will go back up in the next 10 days but stressed that Nplate is a weekly drug.


My whole body is covered in petichae and bruises. I have a bruise on my chin even and all over my arms and legs. This is the worst the petichae have been for me.

Did he purposefully not give it to you? Yes, I hear you about the rash. Mine was incredible. The nurses kept bringing people in to see it because they said they'd never seen one so bad. Actually, it went away even before my platelets went up. I can't figure out that one. I got bruises on my arms from leaning on the arms of the chair. Maybe you leaned your chin on your hand.

You know, I always get awful heat rash on my legs. I've always thought someone was going to have me stopped at customs for having some contagious disease. Tell them it's heat rash if anyone asks. (Nobody will.)

Tell you what-- if you swim, I will. I have always had a rule that I won't wear a bathing suit unless I am at least 2,000 miles from home, and even then, I realy don't. But I am going to let it all hang out if I make it to Florida.

Yes he said my counts were over 150 so no shot, even though the chart said 250. Well he should have looked at chart because I crashed 10 days later!


I will go swimming in my pool if you swim 2000 miles away...it's a deal!

I told my sister I was going to create a portfolio of photos of petichae and bruises I have had....pretty interesting stuff.

Maybe you could make some sort of "art" with them. Decoupage them on boxes or work them into an ITP quilt with your laserjet printer. The possibilities are ENDLESS.

It could be a great project......I'm not artsy at all but it might be a fun project.

I'm not a teacher, but am an occupational therapist in a public school. My closest friends are all teachers. I like your petechia portfoilio idea. I had some pretty crazy ones when my counts were really low in February.

Vdeutsch85 wrote: Yes he said my counts were over 150 so no shot, even though the chart said 250. Well he should have looked at chart because I crashed 10 days later!

Sounds like he's being very responsible and erring on the side of caution.. which has to be a good thing. Why are you seeing two doctors? Sounds like it complicates things.

Ann,

Unfortunately the itp expert is 4 hours away so not possible to see him on a weekly basis. I have to have weekly CBC's and Nplate so have a local doctor here. I am so beyond frustrated with him that will start looking for new ones Tuesday. The itp specialist will be calling all of the shots so the new doc will just have to follow his orders.

I have two doctors although I'm not sure doc #1 will be happy that I chose to go with 10/20 mg steroids instead of just 10 this week. Guess I will find out next Thursday. doc #1 is the guy I was assigned at the hospital. He does more oncology than ITP. As soon as I got out of the hospital I made an appt with doc #2 who does only ITP for the past 20 years. He is an hour away though, not convenient for weekly blood draws, though I can get them at any IU lab here.

I think seeing doctor #2 was a smart thing to do....I wish I would have gone to a specialist sooner.