Please help me... I am very neverous and scared.

I was told last month my platelet level was at 14, my doctor started me out on 40mg of dextramethasone for 4 days. Platelets raised to 21 then back down to 13 in a week. Then He gave me an iVIG drip double dose with dextramethasone 10mg the following week. The next day i felt great... the following day I was admitted into the hospital with the worst headache behind my right eye that I have ever had. I was puking and unable to control my body temp. my platelets went up to 35 but two days later to 31. I have not been checked again since last week but my gums are back to bleeding so I am sure they are back lower now. My doctor wants to take my spleen now... the emergency room called me back after my visit telling me I needed to be see my specialist at OHSU because of buldge in brain behind right eye... I went there yesterday and they are not sure if it is or not. I have been asked to be hospitalized and raise platelets by transfusion means then do angeogram. I am scared this might hurt my weakened vessel walls or lead to stroke. I am scared that if I elect surgery fix aneurysm then they treat my itp again i will suffer allergic reaction again and get more aneurysms?
I have tried to rest my mind and find spiritual healing as well as looking into natural suppliments.. does anyone know anything about papaya leaf or black leaf? I have seen so many ads online for them... does eating kale or taking vitamin k work? Any info that has lead to raising your platelet counts please share with me.

Thank you very much... God love, Rosa

Hello Rosa, firstly the worst headache ever is very common after IVIG so I suspect it's nothing more than a side effect. Of course you need to get it checked just in case but you can be hopeful that there is nothing going on there.

As for the splenectomy, it's far too early to be thinking of that and in any case is fast going out of fashion. Many adults get stable counts either with one of the many treatments or spontaneously after some time. You need to see a haematologist who is experienced with treating ITP and go from there.

I have been seeing a Hemotologist... I am now waiting to see someone at OHSU which is comforting to me. Thank you for replying to me... I burst into tears just knowing you care. Yeah, I accepted the shots for presurgery to have spleen removed but, put off wanting to see what OHSU could offer me. Then the hospital called me referring me to the neurologist I cant be seen until the 4th of december and my gums are bleeding again... please keep me uplifted in your prayers. Thank you again

Rosa:

First, you need to be sure that there is an aneurysm. An angiogram does not seem to be particularly dangerous, so I wouldn't think counts would have to be all that high. You can refuse IVIG if you've had a bad reaction. It can cause aseptic meningitis which can cause headaches and vomiting. There are other things that can get counts up.

All hematologists are not knowledgeable about ITP. There are many who are in the dark and at the beginning of a diagnosis, you wouldn't know what to question. My advice is learn as much as you can and question things. ITP gets easier to accept and manage when you know what you are talking about and you're not just walking into treatments blindly. A splenectomy is not a cure, it's a treatment and can fail at any time after the surgery.

Sometimes the goal with ITP is not to maintain normal counts, but to achieve safe counts (over 30k). Symptoms are important too, not just the count itself.

Hi Ms.Rosa pray n 4 u I 2 am newly diagnosed 9/25/12 my counts were n single digits up until 2 weeks ago after IVIG for 5 days (no side effects) but short term results raised my count to 105 only 4 a week then 27 another week later 15(yesterday) and i am on 70mg of predisone weening myself down dr thinks I am on 90mg the side effects short of breath, dizzy, moonface, weight gain, joint pain, and my right eye has been seeing things n front of it even looks different than left eye but the dr says its fine I live on this PDSA site cause its informative and when u read others story it helps u cope and know u are not alone and what to expect I urge u to go thru and read some of the newly diagnosed we all feel ur pain and still are nervous and scared I was at 4 a month ago had a 4 hr nose bleed heavy thought I was bleeding to death THANK GOD that wasnt 2 be I sometimes obsess cause anything umder 30 is dangerous for brain bleeding and after that nose bleed which stemed from a sneeze I am a little paranoid BUT GOD...at first I was scared to work( I drive school bus) but now I adjust to be n more careful and as long as I have no symptoms or major side effects I push thru life coping with ITP till they find something that works to put me n remission..PEAY N 4 US ALL

Rosa:

I agree with Sandi. There are many treatments for ITP that your doctor hasn't tried yet before having the spleen removed. I would ask a second opinion, and see if you can find a hematologist that is more familiar with ITP.

Where are you located? Someone on this site may have a hematologist suggestion for you.

It is scary in the beginning, but start educating yourself on all the different aspects of ITP. This website is a great source of information, and also of hope. There are many different people on here - and we all deal with our ITP differently! Just like Sandi said - the goal is not a cure, it is to get your platelets to a decent number to live with,

And honestly, I think right now I'd focus on your head. The ITP will be there later.

Rosa,

I only have 3 weeks of experience with all of this but personally, I would hold off on herbal treatments and supplements for now. Both internists and hematologists have told me that counts under 30 are indeed dangerous and any active bleeding should be addressed right away. They have also said that diet, supplements, etc do not impact platelet count. It could be different for everyone but I haven't seen a lot of backing for alternative remedies in the stories on here.

This site is a wonderful resource and I would encourage you to go up to the top of the page and learn all you can from the "about ITP' and the "treatments" tabs. Thats where I started. The bonus was the support that followed after. Its ok to be scared - I think all of us on here were at one point. I felt very alone and confused until I found PDSA. Read the stories on here, stay positive and know you are not alone!

Thank you all so very much for responding... its like a huge hug I have been needing. Im sure my family is tired of hearing about my worries and them being unable to help must be frustrating. I am located in Portland Oregon Kittie... I have had low platelets for six years but, my doctor didnt start treating me until I fell below 20 so I am new to being treated. I would like to know if I had reaction to the ivig drip would I react to rituxin? Could my aneruysum be caused by the aseptic menigitis from the drip? If so I am scared to treat my itp now... meaning it might cause more bleeding in my brain. I am not sure if its worry and stress now but my heart tends to flutter... has anyone elses hearts felt this?

Im sorry to flood everyone with questions but i am praying over my post that it reaches someone that can help comfort me and or I to help someone else. I am not going to be seen for three more weeks... i feel that is to far out for me when platlet level is so low.. any thoughts?

Again I thank you guys for reaching back to me... your stories and advice are reaching me.

Hey Rosa,

I have had my spleen(s) removed three times and I still have low platelet counts. I would highly stress for you to go over ALL your options before having someone cut into you. I wish I had had that option earlier in life. I know this is scary, I just went through another series of the ivig and had that same horrid headache as well. I totaly know what you are talking about and no one can understand the pain until they have gone through it. I am a mother of six and understand the worries and stress you must have going through your brain, but please believe us all here when we say it does get better. I'm keeping you in my prayers

Having a bad reaction to one drug does not mean that you will have a bad reaction to another drug. They are all different. I doubt the aneurysm was caused by IVIG, but you should ask your doctor if you are worried about that.

ROSA you can always call your dr and voice your concerns and tell him your symptoms are not improving they usually will let u come in earlier I myself go to the ER and have them chk me out because I am so new to all this and I get the heart flutters and fuzzy brain so I rather b safe than sorry know one knows your body better than you thus far they havent found anything to keep me out the danger zone longer than a few days so I tend to get paranoid when I get any new symptoms that I cnt shake after a few days hope things get better 4 u (((((HUG)))))

Hi Rosa,

It is most likely being nervous and scared that has your heart fluttering. That happens to me when I am stressed. I had a very bad headache with vomiting after IVIG also. Plus IVIG usually just raises the platelet count for a short time. I had Rituxan first in 2006 and had a 4 1/2 year remission. I had another Rituxan treatment in August 2011 and have been in remission since. During the first Rituxan treatment I had some chest pains (turned out to be reflux)and a headache but after being treated with benedryl, a steroid, and ranitidine for reflux I was able to get through the treatments fine. I am a big worrier and I was anxious about Rituxan side effects, but I got through it!

Dru

Hi Rosa. I have to agree with everyone here about spleen removal being a last effort to treat your IVIG. Having your spleen removed opens up the door to a whole other set of problems , and to me the long term success rate just is not worth the risk. I do wish you the best on your journey and hope all will be well.

WEll you guys were all right... (bunch of pros ...) I ended up in the hospital worried and anxiety. My heart was fluttering because of stress... My platelet level was still up from three weeks ago.. 32. I am going to have the doctor raise platelets then check for aneurysm through the angiogram. If I am aneurysm free I am going to ask to aggressively treat my ITP. I have started seeing a naturalpathic ND as well and my primary care physician has agreed to help me seek out natural healing as well.

Does anyone know anything about vitamin k? I ordered some papaya leaves "paw paw" too from florida... what the heck! I also started taking b complex and 1500 mg of c and vitamin D,magnesium and zinc. Scheduled on the fourth with hemotoligist #2.

Dru- What did your platelet count look like at the lowest? What were your side effects to retuxin? Are you close to Portland Oregon?

Does anyone care to have lunch? You are all in my prayers... Thank you for sharing with me and keeping me uplifted!! You are all in my prayers as well... Sweet dreams!

My platelets were at 15 at the lowest. The side effects of rituxan for me were chest pains, flushing, itchy. When I was given ranitidine for stomach acid, benedryl, and steroids the side effects were much less. I felt fine later in the day and fine the next day.

My daughter is only 3 and she has had alot of treatments. She has hd 5 rounds of IVIG to get her numbers up because she stays at numbers under 10, mostly under 5. She had the reaction of headache and vomitting with the IVIG. They were able to treat this and able to do more IVIG by giving her tylenol for fever and benadryl for the vomitting so that more or less she sleeps through the treatment. She was also givin retuximab and had a very violent reaction to this that they also treated with tylenoil and benadryl. So far nothing has helped with her even though there are many many people with ITP that the medications work for she is not one of them. Everyone is different. Just ask your doctor if they can give you something to counteract the side effects.

I'm so sorry to hear of your precious baby being so sick... I will keep her and your family uplifted in my prayers. I will take it to our church in prayer as well. Please call me I would like to share something with you personally in regards to your child and itp. God has opened a door for me and I am trusting his guidence. Rosa

Rosa:

It is very nice of you to post your phone number for others, but I removed it. The PDSA is a public forum that can be accessed by the entire world, including the nuts. It is not very safe to post such personal information.

If anyone would like to contact Rosa, you may send her a PM to ask for her phone number privately.

Sandi you are precious! Thank you

Ok... Rituxan is on my plate. Scared of side effects serum sickness especially. Looks like a scarey lonely road.

Rosa:

Chances are, you'll be just fine. Most people go into it really scared and come out the other end saying "it wasn't bad at all". For most, it's easier than IVIG.

I didn't think it was so lonely. I never wanted anyone to sit with me through the infusions - why make someone else be bored all day? SO I went by myself and tried to read a book. You get so loopy from the pre-meds that most people just sleep and before you know it, it's over and you go home. Remember, it's not chemo and you will not have the scary side effects like chemo. The people all around you will be having treatments for cancer, so it makes you feel kind of good knowing that you are not one of them. It's all perspective, dear!

Well "mighty mouse" I would have went with you! Bored or not you are so positive and inspiring... Thank you. Where are you?

In PA. Just trying to help!

Opposite coasts or I would have asked you to come be bored with me. I'm going to push it out for awhile while working on a few things!

If I could, I would! You'd be sorry if I did though. :whistle:

At the time I had Rituxan, I was working a full time, stressful job. As awful as this sounds, I was truly just happy to get away from the office for a day each week and chill out. Can you imagine....looking forward to Rituxan as a good reason to miss a day of work? It's true! I know, I'm twisted.

Rosa, Wondering if you did go through with Rituxan. We just finished up -- well, about 7 weeks ago --- for our 13 year old daughter. Hoping if you went ahead you had good results. So far so good for Mia. Sending you prayers for high platelets.

Good morning... I wanted to ask everyone for prayer and positive thoughts... My hemo and I have reached the decision to start rituxan. I was very upset when I heard I had to see a different hemo (4 in 6 months) but I think it might be a blessing in disguise. He seems very proactive and open. I showed him where Ms Erica mentioned a lower dose 100mgs and he agreed that yes we are not cancer patients and that 375mgs might just be excessive. So Monday morning 9 am pacific standard time I will be receiving my first dose at 100mgs.... I thank my little itp family here for your love thoughts prayers advice experience.... Mia thank you for being my little inspiration and Firkins for your support and friendship.

Rosa

Hi Rosa,
Sending prayers that all goes well -- glad you were able to talk to your doctor about the dosages. Great news (ours wouldn't consider that.) Please keep us all posted.
Firkins

Rosa! Good for you! I am so glad that you mentioned the lower dose and your doctor agreed. That's great! Please let us know how it works for you!

Hi Rosa

Try not to worry......thinking of you and sending positive thoughts your way.