Older fellow patients

Hi, I'm new.
I have low platelets & was wondering whether there are other older fellow patients here.
I am 53 years old & I thought most patients are usually fairly young so I'm a little nervous. :blush:

One year ago I was diagnosed with thrombocytopenia. The doctor says its ITP & doesn't know what its cause.
No treatment & under 'watch & wait' mode. My count is about 100. (previously 250)
I check with the doctor whether there is anything I can do or take to prevent the count from slipping, he said no. So its been agonising for the past 12 months & feeling very anxious every time I have to go for the needle prick to check my count.
Is there something that can be done or taken?

Thanks for any help.

Hi Lindy. I just turned 51 this year. I was diagnosed in 2004. There are a lot of "older" people on here, more than I expected!

A count of 100 is great! There are a lot on here who would love to have a count like that. I was one of them until I did Rituxan this past Fall. Now my numbers are in the normal range. Most doctor's won't treat with a number like yours. Try not to worry too much. Your counts might not go down any further. I'm sure others will chime in, so keep reading and posting.

Lindy:

Your doctor is right, there isn't anything you can do to raise your count. However, a count of 100 is a very good, safe count. It's just a bit lower than normal and at this point, isn't anything to worry about. I know I can't easily convince you of that though.

What scares you? Maybe if you can tell us, we can help you past the fear.

CindyL wrote:

Hi Lindy. I just turned 51 this year. I was diagnosed in 2004. There are a lot of "older" people on here, more than I expected!

A count of 100 is great! There are a lot on here who would love to have a count like that. I was one of them until I did Rituxan this past Fall. Now my numbers are in the normal range. Most doctor's won't treat with a number like yours. Try not to worry too much. Your counts might not go down any further. I'm sure others will chime in, so keep reading and posting.

Hi Cindy, thanks for your post.
Nice "meeting" another member in the 50s.
Yes I know comparing with some members here 100 is fine.
But my previous count is 250-300 so 100 seems scary for me.
I am one those anxious type.
Great that Rituxan is helping you & may your platelets always stay in the normal range!

Sandi wrote:

Lindy:

Your doctor is right, there isn't anything you can do to raise your count. However, a count of 100 is a very good, safe count. It's just a bit lower than normal and at this point, isn't anything to worry about. I know I can't easily convince you of that though.

What scares you? Maybe if you can tell us, we can help you past the fear.

Hi Sandi, thanks for this forum.
Sometimes I get unexplained bruises on my forearm & fingers & that's scary.
Also my mother died of a blood disorder (had low platelets, then rbcs then AML) so I get very worried when doc say I have ITP & doesn't rule out any other blood disorders further down the road.

Hope to learn more from other members.

Hi Lindy,
I am a 54 year old farmer, wife, mother & grandma of 5 little boys. I was diagnosed 6 years ago with ITP & it was several months before I calmed down! I am a stresser & had to learn to 'chill'. I even managed to hang up socks in mixed order with different coloured pegs - don't laugh, it's true!
After an initial 12 weeks of Prednisolone, I watched & waited with counts of <30> until recently. I found this site & association a God send, for information & support.
Hang in there, you have much to gain in this experience.
Best wishes from Down Under,
mj

Hi mj, thanks for your post.

So another stresser! I won't laugh, I do weird things too when I'm stressed.
I'm so anxious I have problem with sleep & doc prescibed something for me to take so I get some sleep. Hoping I can get off this pill soon. I'm also scared of taking any drug & stress by it! :silly:

I'm still trying to digest info here.

All the best to you too.

Hello Lindy, welcome
I'm 46, diagnosed in February of this year. It's been an interesting year! I think even the most strong person here stresses about ITP once in awhile! I can't speak about your family history of blood disorders, only to say that everyone is different! That seems to be the buzz words here. But they are true!

Hey, old timer, wake up from your nap, wipe the oatmeal of your chin, and read the forum, you'll get tons of perspective here.

Yeah, it's scary at first, but you'll get used to it.

I was diagnosed in my mid 30's. I'm in my LATE 50's now, and consider myself lucky that this condition didn't manifest itself until my adulthood, especially when I read the accounts of parents with children and even infants who have ITP. At least were blessed with a normal childhood and young adulthood.

Here's hoping yours is just an acute case.

Lindy,
Adding to my previous post - my mother also died from leukemia, & several other relatives from various forms of cancer.
I consider myself very fortunate that all things considered, I only have ITP.
mj

Lindy:

I'm sorry to hear about your Mother. The thing is, you can't diagnose something until it rears its head, so looking for something down the road may be impossible. You didn't know you had ITP until your counts dropped, right?

None of us knows what's in store in the future. Worrying about something that might never happen is a good waste of the time you have. Have you thought about therapy? That is a great alternative to medication and might give you the help you need. Several people have gone that route when they have had anxiety, you wouldn't be the only one!

Welcome Lindy, my first ITP episode was @ age 49y Unresponsive to various Rx and due to 0 count eventually gave up my spleen. All was fine for 9.5y, age 58y when I "relapsed". I only got as low as 10 but again unresponsive until we tried Rituxan. Although it took 9 weeks for Rituxan to react it's been two months and counts holding @ 270/280.

ITP is absolutely scary, the challenge is to find a way to accept and enjoy life. We may need to be cautious about some activities but we can enjoy many without concern. Many here will attest to life "with" ITP - whether our count is 0 or 300.

It's might take a while, did for most of us, to get our mind around ITP (as best we can) and to experience acceptance of ITP as many do with "other" health problems. Probably the uncertainty of ITP is the hardest, uncertain if it's gone - never, uncertain if it'll come back - perhaps, uncertain if it'll get worse - maybe but with routine monitoring and Rx there are options and treatments.

I pray you'll find a peaceful acceptance of ITP sooner than later. Until that moment, hang out here often, ask questions here more often and rant here whenever needed.

Hi lindy, I am the same age as you and was diagnosed a couple of months ago. I can really relate to the anxiety that you are feeling. I am sure my anxiety was exacerbated with menopause - who dropped that bomb????

2 of my 3 siblings also have autoimmune conditions (cancer and rheumatoid arthritis) however both our parents are alive and healthy. My maternal grandfather died in his late 20's after an operation on ?gall bladder - ??ITP

I have chosen to manage my anxiety by becoming very proactive about improving my health. I have just received DVD's from last years PDSA conference and really enjoyed the talk by Tanya Edwards on 'Intergrative Medicine'. My naturopath has also been advising very similar changes that can be made as slowly or as radically as you choose.

My counts are also above the level requiring treatment (60-100). We are lucky to be in a fortunate position to be able to monitor whether health changes we make are effective or not. Positivity - a great drug. :silly: I have also found meditation classes and guided meditations helpful.

This world, as we live it, has changed so quickly recently and some of the changes I value are the internet - offering this site and information++ - and research and knowledge on healthy living and 'Intergrative medicine' (my new buzz word)
Wishing you Joy and Peace and some good nights sleep. Keep posting, Sally

Hi Lindy,

Not to worry too much, stay on this site, you will feel comfortable with all the sharing around.

My husband age 54, diagnosed ITP in June this year, count was 12k. The count was hangging at 3k for the past 2mths. This week count was 1k, no bleeing and other symtoms seen. I would be happy if he is able to get a count of above 10k.

Don't stress yourself, be relax, it's very important to you. I love your count..

Hi, I am also in your age group. 52 and just diagnosed in October, 2010. Started at 1,000 and after Predisone, Dexa Pulse IVIG, and just recently finished Rituxan, still at just 6,000. I had a high of 140 for a day or two, but I have crashed quickly a few times back to 1,000. I have a great doctor at Kaiser in Los Angeles who is up on all this and very responsive to treatments I want and don't want. I am grateful for that. He has mentioned WinRho a few times but after much research I am a little afraid of that one. It will be a last resort. I am also 3 weeks into a holistic approach: no dairy, wheat, sugar and lots of supplements. I feel great and just happy to be alive each morning.

As everyone here says, I guess this takes a while to figure out and reach some stasis. I haven't bled much at low levels, except for some teeth problems at 1,000, and so decided the last few times I dropped low to just stay home and watch a lot of TV and surf the web. That's how I found this incredible resource. It helps to hear everyone's experiences as most friends and family have no idea what to say. Few have heard of ITP (I know I hadn't) and so have few words of wisdom. I am just tired telling anyone anything more. People just want to feel sorry for me and that is NOT what I want!

Good luck to you, Lindy. We are all pulling for each other.

Theresa

Thanks very much to each & everyone for your encouragement & support.

Reading your posts have make me much calmer.
And also make me realise I have alot to be thankful.
My learning journey starts from here.
Thank you all once again.


@sally - where can I find more info about "intergrative medicine"??

@Theresa - what type of supplements are you taking?

I am taking amino acids, Cyruta Plus for bleeding, Gallbladderabx, CandiactinBr. Also the usual vitamin supplements: C, D3, Calcium (since I have osteopenia).

I am being treated by a holistic naturopath named Ann Boroch here in So CAL. She was referred to me by a friend who has the autoimmune disease scleraderma and has been in remission for 7 years after all her doctors told her she would die a slow, agonizing death and there was not much she could do. She follows a kind of celiac diet, which I am also trying. I like Ann and her approach but I may be giving the homeopathic approach a try too. I am NOT happy about all the drug treatments I have had (steroids, IVIG, Rituxan). Worried about their effects down the road since some of these are fairly new and have no long-term trials to speak of. My doctors has talked about Promacta and WinRho both of which scare me.

Theresa

Hi Theresa, Dr. Tanya Edwards spoke at the 2010 PDSA conference and I have only just recieved the DVD's which I ordered from this site - Very good value . She works in Cleveland I think. I live 'down under' so I reckon you'd have a better chance of finding out more about it than me. I was really just speaking 'off the top of my head' and what she said was very much what my naturopath has been advising me. What I liked was that she inspired confidence through an evidence-based approach but also included some practical advice - I am enjoying my pre-dinner Bloody Mary (with tumeric) Her topic was 'the Pros and Cons of Dietary Supplements: Recommendations for ITP Patients. Best wishes, Sally

I'm not sure what supplements to try. :huh:

So far I'm only taking Vit C cause I tend to get mouth ulcers & some bruising.
Vit C is supposed to be helpful in healing the bruises & ulcers I understand.

Any other recommendations? Thanks for any help.

Lindy, I would not do that on my own. Definitely consult with someone because with this condition, you never now what effects something seemingly inconsequential could have. Look, most of us don't even know what caused this, right?

I'm 53, female, diagnosed when I was 30 but certainly had it for at least a few years before that. Until the new thrombopoietin meds nothing ever kept my count out of the single digits and while I can't say "I did fine", mostly I did do fine. A few scary events but over the course of more than twenty years only a very few, and nothing that's done lasting damage. I am the exception in some regards, but it's not unheard of for an ITPer to have crappy counts for years and do alright. Fear is the worst, so if you can find a way to refuse to give in to it that will take away much of ITP's power to hurt you.

Hi libelder, thanks for your post & congratulations on your wedding!

You're right, fear is my worst enemy.
Now that I found this place I'm abit calmer.
Thanks.

@ Theresa, my doctor doesn't think any supplement is going to help.
But he is ok with me taking Vit C (just 500mg).

I am old too....57.
I've never known a count over 98k (years ago), so 100k seems wonderful to me. I'm tickled right now to be over 50k on Promacta.

All of this does get easier as you learn what is and is not for you individually.

Hi Jack,

Thanks for your post & nice to meet another "oldie".
Your post makes me calmer.
Hope Promacta continues to work for you.

Lindy @ Theresa, my doctor doesn't think any supplement is going to help.
But he is ok with me taking Vit C (just 500mg).

Well, he didn't say NOT to try it, so that is good. Many doctors don't want to hear anything about natural or holistic. They are in the med business. I think we should do what we can to help ourselves. This thing kind of requires that, no?

Wow, do you 50-somethings make ME feel old! I turned 70 today! I was diagnosed with ITP when I was 59, and I count myself lucky that (1) I didn't get ITP till I was past middle age, (2) I don't have a scarier disease, (3) my low platelets (high for me is in the 30s--I'm usually in the low 20s, sometimes lower) really haven't limited me (even young, I wasn't into contact sports and high-risk activity), and (4) we have this most helpful support group. ITP has been inconvenient, but I think I live a pretty normal and very full life. I'll bet you will too, Lindy.

Hi karenr, thanks for your comments,it makes me chuckle! :laugh:
Thanks, I needed that!
I agree with you & I'm thankful for the support I have been getting here.
Your post gave me much hope.

@ Theresa, yes I think we also need to help ourselves & explore possible alternatives.