My ITP journey

Hi every one I have been diagnosed with ITP in the summer of 2006 from that year on forward i was in and out of the hospital either that or in the outpatient unit. I have been given several medications first it was prednisone which i was not to fond of it then I was given rituxan,WinRho, decadron and IVIG the only medication that has helped Is the IVIG. My platelets go sky rocket high with this medication. I did have my spleen removed in the summer of 2007. In Oct of 2012 was my last IVIG while I was hospitalized. I was so happy because it had been over two years since the last IVIG and hospitalization. But sad to say Sept 2015 my platelets fell to 11,000 i had petechiae on both if my legs which I new something was wrong. I received platelets given decadron and IVIG my hospital stay was for 4 days and i have been off work since sept 25,2015. I am returning on Oct 5 which I still don't feel to good I feel light headed get headaches off and on and fatigue.... well that's my journey.

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  • Unless someone has actually HAS ITP, it's difficult to explain how it feels. I have it, along with SLE. The lowest my platelets fell was to 32,000, and my doctor put me on a massive dose of dexamethosone. It worked - for a month! Then right back down again. My stomach did not like the steroids. Awful pain! I won't take them again. I take Coumadin as well, so my hands, arms and legs are very "colorful." I am also covered with the purple "dots." But, as my doc said, an hour later, they can either go up or down. When my platelets fall, I feel really sick. I do understand - too well! Labs today!

  • Your right unless you have it you know how it's feel and if you don't yes it's hard to explain my labs are Every Month now unless otherwise I have to go next week for labs when I left the hospital my platelet count was at 369,000 :)

  • I just left my hematologist, and mine are bad. 40,000. We are scheduled for a cruise in 12 days and unless I can raise my platelets with the steroids, I can't leave. My Coumadin level was too high as well - 3.2. I can't stop the Coumadin because I am high risk for blood clots, and the Coumadin is more than likely, in addition to the Lupus, causing the severe ITP. Sometimes life really sucks!

  • Yes it does but don't give up before i use to cry and went into depression I'm like I need to stay positive for my kids. I would cry when I would go to my hemotologist because it was always bad news. But with support of my family I managed to stop crying and being so depressed. When I went into the hospital this past Sept 24 2015 i was to go to Vegas for the weekend I had to cancel that trip but hopefully your platelets will go up in order for u to take your cruise. I know how it is when there at 40,000 then they go down been there. Its like we never know she there going down down down or up up when mine are like really down I get petechai that's when I know mine are low the lowest my platelets gone we're 5,000. Can you get any other medication besides the steroids?

  • Nes--There are no other meds and steroids are just "band aids." They are not the cure. I went to 3 rheumatologists. The drugs they recommended were a big NO-NO to myh hematologist. The side effects would kill me sooner than any of the diseases I have. Lupus is progressive. That's what's doing all of this. It's affecting my heart as well. The thin blood plus the low platelets are causing irregular heartbeats. I don't have time to wait, to get better. I am 72 years old - or young. I am playing in a tennis match tomorrow that I will try to win. Winning is not about the tennis match - it's about beating something that wants to take you and you have to fight every day of your life against it! I feel like my body is at war all the time. I am growing really tired. I'm not sure how much "fight" I have left in me. If I hit my leg tomorrow - I'll be in big trouble. But I will be there for my team - and mostly, for me. Wish me luck!

  • Best of luck tomorrow and be safe and I know what you mean because there's times where I'm like can I do this should I do this but what if. because I'm not sure where my platelets are until I go do labs and when I get my period I need to watch my self because I have hemorrhage twice to where I was anemic and I was given like 6 pints of blood I have also gone thru a bone marrow test which i do produce enough platelets I have Also asked if Its cancerous and my hemotalogist said no. But I have family members that sad to say that have passed had cancer and low platelets but not sure what type of cancer. But just be careful while your out there playing

  • I will try and not hurt myself. If a ball hits me, it will only cause a bump. I just have to win - not for tennis, but for me. Thanks so much again! I'll let you know how things turn out.

  • Yes please do i went back to work today an it went okay i took it easy and your very welcome once I get labs done I will let you know my numbers take care

  • Good luck with your labs. I'm going to take precautions. I am going to put some gauze pads on my left shin and wrap it with an Ace bandage. That's where I usually hit my leg with my racket, so I am going to protect it. If anyone asks, I'll tell them I cut my leg. I'll feel a lot safer and may will be able to focus better. This morning I start my Medrol Pak. Not looking forward to it!

  • Hi so how was your day today how did it go?

  • I started the Medrol Pak yesterday. My heart was pounding in the morning and I had to play a tennis match. We lsot the first set and were winning the second at 5-3, and I started to "crash" and we lost 705. I feel better this morning - Day 2 on the Medrol Pak. Going to play tennis now....will talk later. I think the meds are working - the bruises look like they are getting lighter. I hope!

  • Sorry to hear you lost but don't over do it and glad to hear the meds are working have a good day

  • Thanks! You too! I'll keep trying to win - not just in tennis! Have a great day!

  • Hi there

    hope your day back at work went well for you. Thank you for sharing your story, as a newbie to the group I appreciate hearing from others facing this condition, which I'd not heard of before. With the warmest of wishes, Sandra.

  • Thanks it was not so bad but I took it easy...

  • I was diagnosed with what we thought was pregnancy Thrombocytopenia in October of 2014. Later becoming Chronic Idiopathic Thrombocytopenia in July of 2015 when my platelets dropped to 6,000. Reading your stories is a little reassuring. So far I've been on is prednisone. It has the most awful side affects. I have headaches a lot and have gained lots of weight. But getting to read stuff like this let's me know I can make it. Right now my steroids have been dropped to 30mg and my count is at 60,000. So I consider myself pretty lucky.

  • Yes of course you can make it and I know what you mean by the weight gain on prednisone it happened to Me and while on prednisone I had a hard time falling asleep so then i was prescribed a sleep aid. So have your hemotologist tried any other medication on you? To see which is the Med that works best for you and your platlets?

  • So far all we've done is prednisone. He was talking about chemo if we can't get it to stay up, because staying on the prednisone for a long period isn't recommended.

  • Yeah that's true but I was given several medications and the one that works best for me is the ivig.

  • It can be far more important to treat the symptoms rather than the numbers. Long term prednisone use for counts of 40,000 can be harmfull. Get to know your body and how its responds before jumping back onto medication. There are many other treatment options available these day as well. You can refuse steroids if it makes your lifestyle too difficult, research options and be your own advocate. Many people live happy healthy and ordinary lives with counts of 5,000 to 10,000. As long as you have no bleeding or are overly symptomatic not medicating can be a good option

  • My platelet count today was 60,000. So we have once again lowered the steroids! I'm hoping things stay up. If not it will be the chemotherapy.

  • Good to hear but every when do you have to do labs?

  • I do labs once a week.

  • Okay yeah i used to do that if not it was every three days but now it's gonna be once a month and I'm going next week

  • Lanna: Question:

    Did your doctor ever talk to you about infusions of gamma globulin??? That's what my hematologist said would be the next step for me, as my body just can't tolerate steroids. Three rheumatologists talked about chemo drugs - my hematologist said no. I neglected to ask about side effects from infusions.....

  • All that has been discussed is steroids and chemo. I'm. currently doing the steroids. After reading everyone's stories and talking with a lot of you I am going to discuss my options before excepting chemo, because what if that doesn't even work? I will have taken on a heavy toxin for no reason. I've heard the IVIG works great.

  • Yes ivig works good for me and yes if u can skip the chemo that would be good. The steroids for Me only worked for a little bit. But before chemo ask about other meds like rituxin and winrho and see which one helps you out the most.

  • Guys...What is "IVIG?" I heard success stories about steroids and chemo - depends on how your body reacts. I know I can't do steroids. I did mention Rituxin to my doctor and he didn't really say yes or no. He wants to try the infusion before he'd go to chemo. Is IVIG gamma globulin? Maybe that's what he was referring to??????

  • Yes it is gamma that was works good on me.........

  • Hi Nes. The steroids did not hold. The platelets were 89,000 on Monday. They did another CBC today and they dropped to 55, as did the rest of my numbers. My hematologist ordered the gamma globulin for me, for when we return from our cruise. We leave on Saturday. How long do the effects of the infusion hold?? I've never had one. The nurse said it takes 4 hours.

    I'm right back to fatigue and bruising. Additionally, my husband left the ignition on in our car night before last for 16 hours. The paramedics were called and I showed some signs of CO poisoning. High blood pressure and confusion. It's been an interesting week! Hope yours was better.

  • O no I'm sorry to hear that. The IVIG usually make my platelets rise up the next day so I hope it has the same effect on u.... my last ivig was on sat Sept 26 I only had that on infusion and my platlets went up to 369,000. But today I went and did labs so have to wait till tomorrow and see where they are at.... I do real good on this ivig... hard to say how long it last because every one is different... so when will you be back from your cruise? It really sucks when we start to see the bruises but I don't know if I told you this before or not but at my work many years back thought I was getting abused because of all the bruises I had on my body.... as of right now I don't see any bruises on me or petechai which is always a good sign not to see them.... was there a reason why your hemotologist won't give u the ivig before you leave?

  • You give me hope! We return on October 24th. My doctor had to try the steroids before the insurance company will approve the infusion. They already ordered it for when I get back. I hope the results are like yours - and that they last. I've never been that high- ever. With a massive dose of steroids I went to a little over 100, and it lasted 4 weeks. This time it was 3 days. I knew it wasn't good when the nurse took my blood pressure and my arm immediately bruised up. I took off the ace bandage from the venipuncture 4 hours later and I was still bleeding. I could tell the platelets were dropping because my heart is skipping again. I'm seeing the cardiologist on November 3rd. Chances are the Lupus has hit my heart as well. I only wish someone, somewhere could come up with a treatment that would work for at least a month, without the harsh side effects. I'm running out of options. My doctor will not give me any kind of chemo drug because my body is not strong enough. Any suggestions? Other than a total head transplant? :-) I could not even be an organ donor - no one would want my parts! :-)

  • Aaawww thank you.... I see yeah the insurance also this ivig is not cheap it's expensive. I'm gonna be honest the ivig works for me but the side effects I get i hate headaches dizzy light headed,I throw up nothing makes me feel better than just lying down. That usually last up to one week for me the throwing up usually goes away the next day.... it's weird because in the past I never had those side effects just the head ache but it would go away the next day... that was before tho.... but hopefully for you it will make your platelets go high and hopefully you don't get Any side effects... I just hope you can enjoy your cruise without any issues.... I honestly don't have any other suggestions for you other than trying the ivig...

  • I don't really see any other options for me. Is there something they can give you for the side effects? I'm kind of down today- seeing that my options are so limited. I'm wondering whether the carbon monoxide in my system had anything to do with the platelet dive. I'm not feeling very positive today. Still getting ready for the cruise - not knowing what to expect as far as how I will feel. The worst part is going with another healthy couple. I will feel guilty if I can't do all the things they want to do. My next appt. with my hematologist is on November 3rd. Maybe the platelets will stay around 55 - I hope! It's not great, but better than 40. Thanks for keeping my spirits up and giving me some hope.

  • Don't feel down I used to be like that and it got Me know where I just fell into depression which is no good... please don't give up enjoy your cruise I will be thinking of you When your out in your cruise hoping that you will have fun. Don't let the disease's bring you down we have to beat the disease not let it beat us... go to your cruise thinking positive... on how much fun your gonna have... enjoy life don't think about what you have while on your trip it's only gonna bring u down and the more you think about it the more your gonna get worried and end up sick... yes if you get any side effects from the ivig the doc will give you something.... not sure what state your in but go outside breath the fresh air go for a walk....

  • I live in south Florida. Yes I can be outdoors most of the time, and we're cruising to the Caribbean. I played tennis this morning - won the first set and was losing the second set. I started to get tired. We're going on the cruise - it's not fair to my husband if I want to cancel. I'm so used to feeling sick that it doesn't matter where I am. At least I can sleep in, not make beds and mop floors, and not cook and do dishes. He understands that I get tired as the day goes on, and he doesn't mind watching movies in the cabin after dinner. We're going with friends - she was married to a doctor so she'll understand. He died but her new boyfriend is a nice guy. I'll trya nd stay in touch. YOU be well!

  • O wow you live out there I want to visit Florida I live in Arizona I'm glade you went out and played tennis at least you did something and if you get tired just stop and rest... and when you feel like you want to do something go out and do it. Very true to the cleaning that your not gonna have to worry about it and save some of that energy.... happy to hear your husband won't mind watching movies and staying in if you start to feel sick... the important thing is that you all will be out relaxing.... okay and cool that you will try and stay in touch... you be well too..😄

  • I've never been to Arizona! Wanna switch?? lol We both have to keep walking "uphill" and not allow our sicknesses to defeat us! You are a fighter like me! We don't get down - we get mad!

  • Sure why not lol. Yes lets fight together... this last time I was in the hospital i was upset because for two years i was good but I'm not gonna let this bring me down I'm gonna fight I did labs yesterday I'm gonna call my hemotologist in a bit to get my results and I will let u know what my numbers are...

  • I spent all last night being angry and depressed - but you know what? I said "screw it!" This is my life, and no disease is going to win! I'm over being angry now. I'm lucky I have good friends who care - and now I have you too! We're in this together, girl! Email me when you get your lab report.

    Do you have a FAX? I always ask them to fax me the reports. I like to keep track of them. We're gonna win this battle - and keep on winning! No more anger!

  • Dear Nes,

    Going back to check labs on Monday. Finishing up Medrol Pak tomorrow morning. My body does not like steroids. Had a bad reaction when I took the Decadron, and now, on Day 5 of Medrol, starting to feel the same bad reactions. Question: When I took Decadron, my platelets stayed up higher for about 4 weeks. Have you ever taken Medrol, and how long did the "effects" last?? Most people I've spoken to say they felt great on steroids. I have the opposite effect. The people I've spoken to don't have Lupus, so maybe that's why they felt better??? Also, something I didn't feel with the Decadron - severe, painful cramping in my left lower leg around the ankle. I take Quinine and 400 mg. of Magnesium. This cramping is "new." In an area that I never had cramping before. I also lost 2 pounds.

  • No never took Medrol. With decadron my platelets seemed to be low but the one thing it did was make my sugar levels very high and I'm not a diabetic that's one of the side effects of decadron. Steroids are not for me prednisone would keep me up at night plus the weight gain I guess every body has different side effects with these medications....with decadron no cramping nothing like that with prednisone I did have chest pain which I was told it was the muscle all I did for that was put a warm cloth over it an it worked for me.

  • I heard that steroids raise sugar. Decadron gave me severe stomach pain, even with Prilosec taken prior. I haven't been sleeping well either - even with Alprazalom. Can't understand why they would want you to take the steroids at bedtime - but they do. I lost weight with Decadron as well. Weird! My sugar tends to run on the low side, so for me, that's probably not a bad thing. I'm just hurting, cramping, and feeling confused and miserable! I don't know how athletes take them..in high doses.

  • Yeah it sucks feeling miserable that's how I was feeling ever since I got out of the hospital but now I'm feeling better. I just have to take it day by day although I still get headaches I'm shocked I didnt wake up with one today which is a good thing. I also take magnesium 250 mg with vitamine D because from time to time my left leg hurts at night time but it has nothing to do with my platelets. I do hope you start feeling better... so that means you haven't played tennis?

  • I know headaches - and they sure do hurt! I have them off and on, and blurry vision. I have played tennis this week, but tried to play today and had to stop. I was dizzy and my legs were really hurting. We canceled our dinner reservations for tonight. I finish up with the Medrol tomorrow, and my body does not like it at all. Stomach started hurting today and no appetite. I used to take 200 mg magnesium and my hematologist increased them to 400 mg - a pill called "Mag Ox." It helped the cramping when I first started them, but with the Medrol, and the Quinine and the Mag Ox, I'm getting cramping in my ankle every night. I have two more Medrols to take - one tonight and one tomorrow and then I am done. The bruising looked better when I woke up but are getting darker and I'm starting to feel very tired. Labs on Monday - but it doesn't look promising right now. Hope you feel better, Nes! Hang in there!!!

  • Thanks and you get some rest take it easy don't over do it. Hopefully once your done with your medrols you can start feeling better day by day. Hang in there. It does suck when parts of your body hurt at night: ( my leg hurting has calm down lil by lil at night time. But when it hurts I'm up and night tossing and turning trying to find a comfortable spot but I can't so I take ibuprofen for the pain and it seems to work fine but like I said before this has nothing to do with my ITP.

  • People tell me how "great" they feel when they take the Medrol Pak. So why am I feeling so miserable? We're picking up some McDonald's for dinner, and a small shake. I had a shake last night to try and keep my weight up, but it tasted like chalk to me. The muscles in my legs are sore and I feel weak and dizzy. Hope your headache is better! I had to walk around at 3 in the morning to try and ease up the ankle cramp. I thought the Medrol Pak is supposed to alleviate all of above???????

  • I don't know about that never took that Med but everybody is different and in your case its making you sick. Or you know what can you have ensure shakes? Can you drink those till you get your appetite back? funny that you went to McDonald's because that's what me and my kids ate too my son wanted McDonald's. But take it easy and see how tonight goes.

  • I can't take any supplements because it interferes with the Coumadin I have to take. I think they are inter-acting and causing all these issues. I ate a McChicken - it was ultra-spicy - at least to me. My husband ordered two - I barely got one down. He bought two large shakes for us tonight. Easier than food - you just sip it! Even the Sprite and orange drink didn't taste right. Good thing we canceled dinner! Aside form being so tired and achy, it was an expensive restaurant and a waste for me. Your son has exquisite taste! I love McDonald's (when I am feeling better!). My kids loved it too. Difference is when my kids were young, the three of us could eat for around $5. Now, it would cost most than that for one person! Enjoy your evening. Glad your son wanted McDonald's - a kid after my own heart! I just hope to feel better after I finish the meds. Not even thinking about the cruise - just thinking about getting back to my "usual abnormal state." With Lupus, you never feel "great." But it's a lot better than the way I feel now! Have a good night, Nes! And thanks for caring!!!

  • Your welcome and I did not realize you couldn't take a supplement on coumadin. But okay have a good night and hopefully you can get some rest.

  • Coumadin keeps your blood thin. Vitamin K makes blood clot. Supplements like Boost and Ensure contain some Vitamin K as does Gatorade and all the other nutritional drinks. Because I've had DVT's twice, I have to be careful of my blood becoming thick again. However, with ITP and on Coumadin, I'm not in a "good place." My INR level (Coumadin) rose to 3.2 last Monday. It's supposed to be between 2 and 3. 3.2 means my blood is a little too thin - which may have caused the platelets to fall so much - or vice versa. That's why I drink shakes when I don't eat - junk food shakes, really. Wish I could be drinking nutritional ones - maybe I wouldn't be so fatigued.

    There are a lot of things I can't take on while on Coumadin, like antacids and antibiotics. I take antibiotics only when really necessary. Everything, and I mean everything, affects the Coumadin level. My doctor won't change to any other blood thinners because they don't have an "antidote." The "antidote" for Coumadin, if I get hurt and bleed badly, is an injection of Vitamin K. That would help my blood clot - temporarily. Take care!

  • Hi r u okay haven't heard from you

  • Hi Nes!

    We were on a cruise, and got back less than 2 weeks ago. Steroids are off my list! I took the Medrol Pak, which caused terrible ankle cramping and made me sick, and in 3 days, the platelets went from 89 to 55, so steroids are out! My doctor said the next thing would be an infusion, so he ordered it to have in the office. The insurance company harrassed me with phone calls every day, asking me for a $2000 copay for each one. I saw my doctor on Tuesday and he said not to worry - that if and when I need the IvIg, he would get it for me, even if he had to put me into the hospital. My platelets were 51 on Tuesday, which, for me is good! I saw the cardiologist and told hm about the "skipping" I feel in my heart. He ordered an echo cardiagram to see if there is any fluid around the heart, or, if I have A-fib. He said Lupus can cause that. I have it scheduled for November 18th. all we've been doing are doctors - two on Tuesday. I had my eye checkup, my husband had some appts. and hopefully, after next week, we can be thru all of this.

    I am still playing tennis, and my doctor says don't stop! We went on the cruise with another couple - who are healthy! They had energy that I don't. Every night, they wanted to see the shows. When we got home, it took me 3 days to start to feel better. We were exhausted. From now on, we go alone. When we are on a cruise, we have dinner, and then, back to our cabin and watch On Demand movies. We can't stay up late and run around all evening. We went to one beach, and shopped a little. We booked another cruise for February - we are now taking inside cabins, which are much less expensive. We can do the same things with a cheaper cabin and all we do is sleep there, watch tv, and shower. We save a lot of money by doing that! Plus, Princess Cruises has a wonderful medical department, should I need it. That's why we stay with Princess. We get the best insurance for the price of Standard because we are Elite, and I feel safe, knowing there are 2 doctors and 3 nurses available, and a fully equipped medical dept. My only problem is getting the AC turned off in our cabin. I have a terrible problem with Raynaud's and the new ships have thermostats that they control. So I have to get letters from doctors to turn off the AC. Once they do that, I'm OK.

    How have YOU been??????

  • Awesome another cruise and yeah going alone is good.... well next week I have to do labs that last blood drawn was on Oct 15 and my platelets went down from 369,000 to 130,000... I'm pretty sure there still in the high numbers because i don't have any brusing or petechai.... so I can say I have been good

  • 130,000?? WOW! I will never see that number, but I am satisfied with 51,000. They call it "stable." My white count was surprisingly higher - 3-something. It's usually around 2. Yes another cruise in February. I'm not telling anyone around here - we want to be by ourselves so I don't have to make excuses for not eating certain things or for being tired. Good for you with 130,000!!!!!!! STAY that way!

  • Yeah I will try

  • Nes -- My doctor ran some new labs - maybe you know what they mean?? Something about "Free Kappa Light Chains, was 23.48. High normal was around 19-something. I tried to do research but whatever I found was scary. I always get results late Friday night - too late to call doctors. Also, my creatinine was fairly high, for me - 1.14. Doing research is probably wrong, because it mentions multiple myeloma, and another plasma disease. Do you know anything about this??????

  • I have no clue what it means sorry... but I'm gonna try and stay in the high range as long as my immune system allows it... and yes go alone on your cruise. When ever I take trips it's only my kids and husband I don't like having any body else around that our time together... that's why I tell him to shhhhh.... tha

  • We didn't invite them the last time - they invited themselves. They are not married and he has lots of $$$$. She mentioned wanting to go to Italy on their next trip. I hope they do! I have no strength to run around with another couple, and my diet is limited because of the Coumadin, so I have to question the ingredients in every dish - and sometimes, it's embarrassing. My life style is not like the normal person. I have many medical issues and find it embarrassing to have to explain myself all the time.

  • Yeah I know what u mean by inviting themselves I hate that lol.... but any how that sad how u need to watch what u eat.. I wish u could eat whatever u want.... next year his brothers along with there families want to go on a cruise not sure which one all I know it leaves long beach California I think lol...but I don't know.... we will see if it ever happens.... but what sucks is how u said u got ur labs late Friday and can't reach ur doc office to find out what the results mean.... every time I do labs everything else comes out fine except my platlets but there at a good number for me.... we will see next week when i have to go do labs I'm pretty sure there in the high range.... also about going with other people to places it's like what if u don't like what they do or where they go.... sometimes you just need to be alone and do ur own thing....

  • We like to do our own thing because I have so many medical problems, all of which cause fatigue. We just spent 2 hours at the pool, and I am even too exhausted to take a shower right now. I did laundry and damp mopped the floors this morning and that just about wipes me out. We go on a lot of cruises, and what we enjoy most about the new Princess ships is the On Demand movies. We can get into bed, and choose from hundreds of movies. Sometimes we'll take snacks to the cabin and watch the movies with refreshments! With other couples, you feel "obligated" to do what they want. Besides, with not being able to eat everything, I can ask our waiter for special things to have for me, in advance. I would be embarrassed to do that with another couple. They are both healthy and can run around a ship and stay up to all hours. We can't. At least, I can't, and my husband is used to my lifestyle now. We go only Princess because we are Elite, and they do our laundry, fill up our mini bar (I drink the water and Perrier), and we get fresh fruit every day and canapes. We also get free internet minutes and on board credit - plus, we've done a lot of fashion shows, and we get additional discounts for doing them.

  • Nice but u shouldn't feel embarrassed of what u have to order to eat..... it's not ur fault what ur going thru its not preventable sorry to hear ur exhausted but let me stop here so u can get some rest take care....

  • Just took my shower and now I can rest. The problem is....I don't look sick, so people think that I'm either being fussy or looking for attention. They have no idea about my labs, etc. They can see all the purple bruises, but I take Coumadin s they think it's all from that. It's the ITP what's made it much worse. It used to be only my arms, now it's my hands and even my fingers that have bruises on them, plus, of course, my legs. It's a tough life, Nes. I did more reading on those Free Kappa Light cells, and I saw my cardiologist because I have been having arrhythmia, so his ordering an echo cardiogram was the way to go. I could have fluid around my heart, which is what he's looking for, and would also explain the "sudden" 3 pounds I put on. My weight hadn't changed in 4 years, and now, suddenly, I'm gaining. I'm not eating any more than I always have, so the only explanation is fluid. I have the appt. on November 18th. Good luck with your labs too!

  • Hello how did your doc appt go???? Also I did labs yesterday and today i got my results and I'm happy to say my Platelet count is at 164,000... they actually went up since one month ago by 34,000.... 😀

  • WOW! Great news! My platelets were not too bad, 2 weeks ago - 51. I'll settle for that. I'm not doing too well. On Sunday, I had either a TIA or a seizure. The neurologist is not sure. I have to have a battery of tests - EEG, MRI, MRA. We're going to Naples FL for Thanksgiving next week, and I will try and enjoy our time there. Sine Sunday, and again, a brief episode yesterday - I am scared. It was really awful! I was reading the Sunday newspaper, and all of sudden, everything went dark; my head started to feel like it was in a blender, and I thought I was dying. Luckily my husband was home. I screamed for help, and he can into the kitchen where I was, and he said I was shaking. I remember feeling cold and it was dark and I never felt that way in my life. I saw my PCP and the neurologist today, and we'll take it from there. Going to relax and watch TV now. I'm reallynot feeling great. My body has been thru the mill!!!

  • O no sorry that u haven't been doing to well... yes get some rest you need it after what u have been thru... I know what u mean of being scared I have a trip coming up in March and I'm like what if my platelets get low out there and what am I going to do... but u know what I need to think positive I shall be okay... do u have anybody out there besides your husband to help u out??? Good luck in ur tests and I hope everything goes well...

  • Nes - You can't live in fear. I decided that today. If we do - we lose!!!!

    I played a very competitive tennis match today - with the weakest player in my group. We won! We played two full sets and a 10 point tie breaker, and I was out there for close to two hours in 90 degrees, but I was determined NOT to live in fear and just go out and do what I had to do - for ME! You will be fine! My platelets have gone as low as 32,000. If yours drop a little, you will be fine!!! Ger it out of your head that you will feel sick - and just enjoy every minute of your day!!!!! A lot of our "survival" depends on attitude - I think a lot of Lupies out there will agree!!!!!!

  • OMG ur a very strong woman I really admire u for that look at all of what u have been thru and ur still determined to go out there and play. Yeah I know I need to stop thinking that I'm gonna get sick... yes I need to enjoy Evey min and every day.... I just don't want to get sick again it's no fun being in the hospital for like 4-5 days and especially the IVIG side effects it gives me.... so I go next month and do labs and my hemo appt is in Jan....its nice to have conversations with some one else who has its because we understand our disorder and our symptoms... I enjoy talking to u 😀😃

  • ..and your labs are going to be FINE! We have to be strong because we are survivors! Instead of being scared, we are forced to be tough. We are in the battle of our lives, and if we allow Lupus to win this battle, all the needles in our arms; all the hospital beds we've slept in, and all the fun we had to skip because of illness will have been in vain! You will be great in March. We have a cruise on Super Bowl Sunday. Take insurance - you will have peace of mind - and enjoy every moment of your life! I've lost too many friends to various diseases and I don't want to lose any more - including my own! We have many demons to fight, and we will survive in spite of them! Have a wonderful Thanksgiving and know that I am here, for you!!!!!!!!!!!!!! Great talking to you too! :-)

  • Hello it's been a very long while since we have written to one another how are u doing

  • Does anyone has kids with itp???

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