Life with ITP

Just wanted to throw a question out there, I have ITP for just over twelve months but I sometimes wonder is this a correct diagnosis. I have read a lot on forums and the internet about ITP and I know I have low platelets, but since I was first in hospital and diagnosed I have never really felt well. I seem to be always low on energy, in pain and generally just feel like I have a bad flu. Do others feel that way?
I would really like to get some opinions on this as I am going to see my Doctor next week and although I have spoken to him about this before I am going to try him to refer me to another Dr if this is not normal ITP symptoms. It is ok to read stuff on the net but it mostly says that ITP shouldn't make you feel this way.
Thanks to all that can give me insight......

BTW if you have any suggestions to what this may be please feel free to say.

hi milly what is your platelet count as of now?usually when its at verry low count you can feel that your tired,and not feeling well ofcourse,they said that in person with itp the safe range is 30 up,well me i have 47 counts now and i feel normal,but i have flue and colds too,

Thanks for your reply Rainlyn my last count was 170. I have been of prednisone since November. The first count was 278, then 190, then 170 about one month ago, last few days I have a lot of brusing and when I woke up yesterday I had a lot of marks on my face, like a rash. The pain I have is like stiffness and when I stand I have to give myself time to make sure my legs will not collapse, but I have been like this for about three months. The flu like symptoms have only been last few days.
This is really getting me down. I dread nights as this is when the pain seems to be really bad (when I am not moving).
I am due for cbc next week.
Thankyou so much for your reply I am still very new to all this and I really appreciate any advice any one can give.

Milly:

Most people have 'just' ITP, but some do end up developing Lupus at a later time. Talk to your doctor about it. You should probably have some screening tests done (ANA, SED rate). If your hematologist won't do it, see your GP.

Some of the treatments can make you feel that way, especially steroids, so it could be that if you've been treating.

Thanks Sandi for the input, much appreciated. I have had ANA and SED rate done all in normal range, my GP seems to think it may be Lupus as he tests for it every now and then. He has suggested that I go back on steroids as he feels this would control the pain, I am presently taking some pretty strong pain meds. I am not totally against the steroid idea but I would like to know what is causing this before just covering it over. I have been on steroids, starting last Feb at 90mg a day and finished in November, I had really bad side effects until I got down to about 15mg a day, so maybe a small dose would not be so bad, you know sometimes we all have to do things that we don't really like but life is to short to live it in pain.
This group has been a life saver for me since all this started, I have Steves (gort) advice on my fridge and every time I feel a bit panicked by all this I take 10 minutes out and read this over again ( I could probably do a pretty good recital as I have read it so many times lol)thanks Steve you don't know how valuable this one has been for me.
Anyway I have Dr visit tomorrow and we are going to discuss what to do next as far as pain, don't want to get addicted to these meds. Also next cbc tomorrow, got a few bruises and spots over the last few days but I still think it will be ok.
Sorry to turn this into a novel but it is so good to be able to just get all this out, I have a great family and try as they may can't really understand what I feel.

It's good that you're being monitored. Sometimes symptoms begin long before blood work shows anything.

I take a lot of meds too, but like you said, you have to do what you have to do. Let me know what the doctor says.

Doctors visit day was really productive, we reviewed the results of all the test I have had for ANA and sed rate and all are normal. He has given me a pain patch that I wear for a week at a time its called Norspan, seems to be working ok. He has also referred me to a Rheumatologist appointment next week, so maybe this will give me some answers. Hopefully problem close to being fixed.
While I was seeing my GP we where just having a general ITP discussion and he said something that I am unsure about and hoping maybe someone can clarify for me. When I was originally diagnosed with ITP I was in hospital with a count of 2, I had lost alot of blood and needed quiet a few blood transfusions, platelets and plasma, stayed in hospital for about eight or nine days. I left hospital on 75mg of prednisone and it took about two months for my counts to stay above 100. I was on prednisone for about ten months and my counts where up and down between 40 and the 278. Since I have been off prednisone my counts have dropped by about sixty thousand a month anyway my doctor passed a comment that the ITP was cured. I didnt think there was a cure. My question is this a once only thing? How many adults have low platelets once?
I dont have a hematologist just a GP.

Milly:

Cured? No. It could be a one time thing but you really won't know that for a long time. Some people have acute ITP and never have a problem again, but it's too soon to tell if that's the case for you.

When I was first diagnosed, I was on Prednisone twice in that year. The second time, my counts stayed up over 150. I had frequent CBC's after that for a year and a half and they were fine. I stopped having counts done for the next year and a half thinking it was all over and done. My GP talked me into a CBC and my counts were in the 30's. I have no idea how long they were down, so I was back to monitoring and eventually, treating.

That may not happen to you, but I did want you to know that things like that do happen.

Thanks Sandi, I thought that ITP and cured was a bit strange at this early stage seeing as though I have only been of prednisone for three months anyway still having cbc , next one on Friday.
I have a feeling I may have had ITP as a child. My parents have told me that when I was two (many moons ago) that I was in a large hospital in Sydney with a bleeding problem. This was 48 years ago and the doctors never found out what the problem was. I can also remember having nose bleeds and a lot of brusing all through my life, maybe ITP just not diagnosed.
The original specialist I seen in hospital when I was diagnosed seemed to think that this was not just going to go away. Not much point in stressing about it though, what will be will be. I will just deal with it when and if it returns. The good thing this time if it returns I am trying to get better educated about treatments ect so as I am better at making decisions. I sometimes get very angry at myself that I stayed on prednisone with the really bad side effects and the huge impact it had on my life ( whole other story) when I could have tried something else.
Anyway life goes on and all you can do is your best at the time, learn and take more control in the future, someone once told me knowledge brings power.
Thanks again for the advice, all the people on here are a godsend to me!!!!!!

Just a quick update, I have had my first appointment with the Rheumatologist and he thinks that the pain I have been having is from a tumour I had on my parathyroid gland last year, he said because the levels of calcium in my blood was so high for so long he thinks that calcium has leaked into my joints. Anyway x-rays have been done and go back in couple of weeks to see if this is causing the pain I am in.

I also have got more recent platelets count and I have a question. Over the last two months my platelets have gone from 278, 198, 180, to 160 (all great counts)but my GP comment was that because platelets are stable not to be tested again for 2 or 3 months, is this considered stable? I am not on any ITP treatment at the moment, been 3 months so far since I had prednisone.

Question 2. I usually do not bruise or get any spots when platelets are really low (lowest they have been is 2k) but I do bleed alot. Should I wait 2 or 3 months for next test when I risk having a bleeding episode?
Thanks for the help and I hope you are Ok Sandi that was one big storm.

Milly I would do what you are comfortable with. Will your GP let you have a count done sooner if you feel one is necessary? Personally with your count dropping like that over the past 2 months I wouldn't call it stable - yes the counts are good ones but I wouldn't say dropping 118k in a 2 month period is stable [however an expert I am not].

When I was in "remission", no treatment, for 9 years my count went between 85k and 125k - I only tested once a year - I would say that was stable.

With a count dropping like yours, if I were you I would want a count sooner than 3 months.

Keep us posted!

Yeah Melinda I think you are right, I have a pretty good GP I don't think he has a great knowledge of ITP, but he is good to me as a patient. He will always listen and discusses everything and he always ask's what my opinion is, the only thing he won't do is refer me to a hematolagist (don't know his reason for this.
I think I will ask him for another blood test in about six weeks because I am a bit nervous as this is my first time with no treatment, still very new to ITP.

Thanks for your reply,
Gail (Milly is a family nickname)

Back to the Rheumatologist today and the x-rays have shown that I have calcium deposits in my joints, this has come about due to a parathyroid tumour I had last year (this causes high calcium in your blood)and then can go into your joints. Another pill to take but if helps thats ok.
He has also ordered some blood tests that I have not had before as he thinks there may still be something else wrong.
One is c reactive protein and HLA B27 and diff/esr does anyone know what these test are for, I didn't get a chance to ask the doctor as the receptionist gave me the blood test request?

This is what I found from sites I feel are good:

www.mayoclinic.com/health/c-reactive-protein/MY01018/DSECTION=why-its-done
A C-reactive protein (CRP) test checks for swelling (inflammation). CRP is a protein that builds up in your blood only when there's inflammation somewhere in your body.

www.nlm.nih.gov/medlineplus/ency/article/003551.htm
Your doctor may order this test if you have joint pain, stiffness, or swelling.

Those calcium deposits must be painful.

Good luck with the tests!

Thanks Melinda, I looked it up but some sites are a bit hard to understand, these were good. Still a bit unsure what they are looking for but I will talk ti the Dr next time. The good thing he has also ordered heaps of other tests as well including a cbc.
The calcium deposit are really painful but the meds he has given me have kicked in and i feel good.I did have a look at the side effects of this med and found this

Adverse reactions can occur with colchicine use and it's important that you are aware of the potential.

Bone marrow depression, with aplastic anemia, with agranulocytosis or with thrombocytopenia may occur in patients receiving long-term therapy.

I am a bit worried about this, doing some more research now.
Thanks for your interest, it was a big help.

Rita:

A lot of meds list thrombocytopenia as a side effect. It would be hard to find one that doesn't list it. Just because it lists it doesn't mean you'll have a problem. However, it's good to be aware of the possibility for a drop.

I'm glad the drug is working for you.

Went back to Rheumatologist today as last drugs where not working so well, results of blood tests where all ok platelets 180 so this was great news. LFT was a bit abonormal but at this stage nothing to worry about, he now thinks I have Rheumatoid arthritis and has prescribed Methotrexate for this.

Has anyone had any experience with this medication?

I will have some experience this week. I'm supposed to go on it too. We can do it together.

I still have not decided if I want to take it. Side effects look pretty scary. If I do take it, it won't be until Friday after work. I've read that a person can feel sick for a day or so, and I can't afford to feel that way at work. If you take it sooner, let me know how it goes.

the side effects sounds really scary..ain't there any other alternatives??
hope everything goes well and smooth for u all..

Yeah Sandi I agree about the side effects very scary indeed but not much fun living in pain either so I think I will take a chance with it, good part is I am being really closely watched, standing order for lots of blood tests fortnightly.
The Dr also be careful to wash hands after touching tablets, watch for infections and heaps of other things to be careful of.

I am like you starting on the weekend as I don't want any adverse reaction at work, although my work has been really good to me (had about seven months off last year and still got paid).
I will start Saturday, I am in Australia so I think this will be your Friday. I will let you know how I go.

Hi Chrislin, side effects do sound a bit worrisome but so do the side effects of prednisone. I have tied lots of other meds for this but nothing has worked.
Thanks so much for your good wishes though.

What dose do you have? She gave me 10 mg's. I was hoping for less and might just take 5 or 7.5 anyway since they come in 2.5 mg tablets. I'm being monitored too. I had my baseline blood work last Friday. Those are not the side effects that scare me though - it's Stevens Johnson and side effects like that that I worry about. I'll let you know on Saturday morning how it went.

Chrislin - no other options, really. I've been through so many others over the years that this is a logical next step.

I am on 10mg as well, you got me on the Stevens Johnson thing though could you please let me know what this is. I am also taking Folic Acid as recommended, started that today.
Thanks.

Ok I looked up the Stevens Johnson thing, now I am worried. Got to do a lot of research before Saturday.

Sandi I am unsure if to take them at night as I have seen that maybe it's better to take these before bed.

I've been afraid of Stevens Johnson for years. Just a weird phobia. It's a side effect with a lot of meds, even some antibiotics, including the one I was on last. I have to get over it.

I am going to take it an hour or two before bed. I'm hoping I sleep through the worst of it. I'm going to pick it up tomorrow along with the folic acid. I haven't started that yet.

I think I am going to take it at night for that same reason, I have decided to have a go at it, all drugs have side effects and I am just at the point where I have really had enough of this pain, I have tried everything from slow release pain meds to morphine patches.

I have decided that I just have to have confidence that fortnightly test will pick up any adverse reactions quickly.

Good luck Sandi I hope it all is ok for you.

Good luck to you too.

Today was so bad I was ready to try arsenic. The last two drugs I tried - Lyrica and CellCept, were so bad I was unable to function. I hope this one is better.