scared and confused

Thank you to everyone for your support. Truly this is the only place I can go and express myself and find caring and compassionate people.


Is it normal the stop the prednisone and have no other treatments at this time? Is find it kind of weird the hemo didn’t mention something else and just told me to see her at the end of March.


Sandi: I work for the same reason to keep my health insurance. Also I sent you a private e-mail did you see it or did it land in your junk mail?


Michelle

Michelle:

I didn't look - I'll do it now.

Yes, it is normal to stop Prenisone when counts are up and just monitor things. Usually at this point, you just watch the counts and discuss treating again if counts drop to treatment level (usually around 20 or 30k). During that time - r-e-l-a-x!

HI.

Went for my bloodwork on Monday, count is down again to 148,000. It drop from Friday at 179,000. When the hemo did it in her office. Sunday was my last day on predisone. I did not take any on Monday.

I am trying not to worry about this as I am sure it's only because I stop and my body is adjusting. The hemo's nurse just told me to go next Monday for my weekly bloodwork like usual unless I see any symptoms.

I have since Sunday afternoon , my stomach felt kind of funny and I felt kind of nauseas but I haven’t' thrown up. and still does, can this be a symptom of down dosing and withdrawal from the prednisone?

Michelle,
Still very good counts, the difference could be as simple as having counts done in different labs, counts also vary in people without itp. My counts without any treatment are anywhere from 90 to 160 so fluctuation is the normal for me (they are higher since I have been on methotrexate for RA). Take each count as it comes, no point worrying about the next one, you can't live like that, you would be doing nothing but worrying.
I didn't have any stomach problems when coming off pred just muscle and joint pain, maybe someone else can help you with that answer.
I hope you are doing ok.

Hi Milly:

You always have some comforting words for me I apprecaited that. I reply your e-mail to me.

Michelle

Sandi:

The hema said if it drops to 100,000, then she would treat with either a transfusion or one round of IVG? Does this sound normal or extreme?

Normal - no. Extreme - yes. She really said that?

Sandi:

When her nurse return my call last Monday to let me know what my platelet count was, she said the doc said if it drops down to 100,000 or below with my next bloodwork(which is this Monday). The doctor was going to treat it with a transfusion or IVG.

I always called every Monday at my break at work to see what my counts are, especially now since I had blood work done in the ER when I hit my head on Friday the 13th , Then Monday the 16th, my normal bloodwork day, then at the hema’s office on Jan 20th and then the following Monday on January 23rd. It keep dropping as I said in a early post. The 23rd was 148,000, was the last count.

Thanks for your help.

Michelle

My doctors have always told me they would not treat at all unless I go under 50,000. I think this is the opinion of a lot of doctors. I would not want to be treated with IVIG unless I really needed it. Just my opinion.

I wasn't treated until I went under 10. That's probably not common but 20 or 30 certainly is. I wonder if the nurse misunderstood what the doctor said.

Michelle,
I have had major surgery with counts under 100, I consider myself to be pretty cautious with this whole ITP thing but I think I would get a second opinion about treating at 100. I am pretty sure Sandi put a link on the boards recently about new guidelines for treatment and what is considered low platelets and in this article it said above 100 was normal. (I tried to find it but couldn't, I will look again later)

Michelle I know sometimes doctors can be intimidating but you need to ask a few questions like what is the doctor trying to achieve, a count above 100 or 150, what it if this never happens, are you going to be constantly treating, ITP will consume your life if that is what is going to happen and also do you really want all those harsh treatments just to get a "normal count" when you don't need to.

My counts with no treatment is between 90 and 120 (it is higher now but I think this is because of the treatment for RA) BUT if my counts was to stay at the 90 I would be one happy camper and I would not treat.
Michelle I know how hard this has been for you but you need to take control. I will try to find the article for you and maybe you could show your doctor, I am sure it was from ASH and a good reputable source.
Good luck my friend,

I agree with both Milly and Ann. Actually, I left the hospital 1 1/2 years ago with a count of 12000. I was at 1000 and was just happy to get to 12000. And, I wouldn't let them treat me any further until I again went back to 1-4000. I was in the hospital for 2 weeks just to get to 12000. Mentally, I was just delighted to get out of the hospital.

Thanks everyone. I am sorry I had to find this website(well my friend did) but I am glad she did and I am glad for the support and being able to ask any question and just express myself. When and if I ever get myself in a better place emotional and physical with this ITP. I hope to return to same support and caring to new people on this website.

The doctor did the second MRI with the dye contrast. I have big bruise from the needle the used to inject the contrast dye. The bruise didn’t show up till the next day and I almost panic think it was the ITP until I remember that’s where she stuck me with the needle. They saw the same thing in the second MRI as in the first one without the contrast. It is call hype intense signal. I see the nerolougist on March 7th. I am surprise they are waiting 5 weeks, but I am assuming it’s not really serious or they would have gotten me in even sooner. My family doctor suggest I make an appointment with my eye doctor since I am having blurred vision in my right eye, every time the pain in my head (from the hyper signal) comes on. Is there anything I had to watch with having ITP and a vision check, especially when they put those drops in your eyes to dilate them?

Sorry for all the questions. I fell like I am bothering you all with these dumb questions and concerns.

Michelle, don't feel like you are bothering anyone and no such thing as dumb questions, the dye is fine and you should have your eyes checked, I did mine a little while ago and I couldn't believe my eyes were so bad, sometimes your sight can go a bit and it is a slow process so you don't know that it is getting worse, I love my glasses, it is so good to be able to see.

Sigh. Went for bloodwork on Monday, platelets are down to 85,000. Hema still want to go IVGG treatments to get them back up. She want to do them ASAP, today (Tuesday) or tomorrow as outpatient as soon as her schedule can get me in. I am surprise she didn’t tell me to go the ER and check me in the hospital. I’ve been feeling really lousy and tired since this weekend and especially Sunday. I felt horrible, I kind of figure they were down from the way I was feeling. Saturday my knees and back hurts so bad I could hardly walk.

Would go back on prednisone be a better option?

Also what at the risk and benefits of N-PLATE?

Thank you all again.

Any hema who treats at those counts, unless there is serious bleeding, is just panicking, in my opinion! Even my doctor wouldn't treat me unless I was under 20. Those aren't bad counts and you shouldn't need to be admitted in to the hospital. Is it possible for you to get a second opinion?

As for the prednisone, how did you do when you were on it before? At what dose? Can't help with the N-Plate question, I'm not on it.

Your haematologist won't like Nplate because you're only supposed to aim for a count of 50. I've been on it for over 2 years and on Friday my count was 25. I get it checked in another 8 weeks.

There's no point in keep trying the prednisone. You don't want to be on it for ever and that's what you'd need to do. Can you get another opinion?

Your counts are going down slowly, but not crashing. He might be able to up the dose of prednisone to see if your counts stablize. You still have good counts--just not sure what is making them go down. May be you should get a second opinion.

Michelle
I am sorry to hear that your counts have dropped again but I still think you need to find out what this doctor is trying to achieve, does she want your counts to be at 150 or above? what count would she be happy with? Ivig is only temporary, a short term boost is probably the best you can expect.
You are probably feeling achey from only being of prednisone for a week it takes a while for you to get over the aches when you stop prednisone.

I really hope that you get another opinion or a least talk to your doctor about her long term plan and what she wants from any sort of treatment.
Anyway good luck for today and let us know how you go.

Milly is right about that. It does take a while to get over the effects of prednisone taper. I'm still feeling the effects of the Decadron. It would be nice if she could get your counts to stabilize; then she could go from there for a treatment plan.

Please keep us posted and good luck to you.

Hi folks:

I didn’t go to well this time with the IVIG. Thursday, when by almost the end of the treatment I felt cold but that was all. Friday, when I got home, I was cold, nausa (no throwing up) and just felt bad over all. My temp was between 98.9 and 100 but I did have hot tea to try to warm up. I was talking to my friend on the phone and she went to this website to make sure the symptoms I was having were normal after an IVIG treatment. I didn’t have any of these symptoms the last time back in November when she did a booster with the IVIG, I was on 70mg of prednisone at that time plus my counts were up pretty much back then so I guess I didn’t’ feel the side effects as much. I see my hema on Thursday, if she mention removing my spleen, I may just seek a second opinion and go outside the city and maybe down to Philadelphia.


Plus now I have to deal with and worry about this pain in my head that they diagnosed as hyper intense signal. I see the eye doc on Tuesday so he can see if it’s just cause by a need to change my glass/contact prescription. If he finds something glees and diagnoses me with something else. I honsely don’t know if I can handle another medical issue. I am find it very hard to stay positive about anything these days. My workplace doesn’t help, it’s not a very positive atmosphere there either and morale is next to none.


Thank you for listening.

Michelle

Hey Michelle, I hope you are doing ok.

Michelle--Just wanted to check on you, too. Hope you are doing okay. Hope you are feeling better.

DeeDee, just wanted to let you know Michelle was admitted to hospital yesterday with a platelet count of 5, she will be having her spleen removed in the next couple of days.

Milly

Milly, Thanks for letting me know (my son has been on the computer); I will say some prayers for her.

DeeDee

how are you now Michellek ?

Hope you are doing wonderful.
Seema Mathew