ITP patient over 65+

I would love to hear from any 65+ ITP patients. What treatment to consider,feeling overwhelmed with so much information.

Thank You
Polly

Polly can you give more info please - count, any symptoms, who long you've been diagnosed, what treatments you have had if any etc.

Thanks!

Me and medicine have never got along, I have side effect to everything, blood pressure meds,cholesterol meds,and antibiotics. I suffered through preidisone for 4 month. Felt awful
thought I was going crazy but # kept going up,from 6 from when I went to the hospital
to 204 when Dr. took me off meds two weeks ago. Had blood work this morning hoping for
the best. If # are below 50 Dr. wants to do infusion,from what I've researched side
effect scare me,especially the way my body reacts. I would like to hear from someone
around my age who has got through this, everyone seems so young.
God bless all of you who have this, it has brought me to my knees.

Thanks so much,
Polly

I'm not over 65 but I wanted to say that if you are not having other medical problems to explain it, then a transfusion of platelets for a count near but under 50 does not sound like good practice. Do you have a doctor who is familiar with ITP? That helps a lot.
Erica

I'm sorry, re-reading and maybe you meant an infusion of IVIG, for some reason I thought 'transfusion'. Most doctors would wait for a lower count before medicating. But you are right, maybe age can be a factor in deciding at what count to treat.
Erica

Polly:

I just wanted to let you know that you are not alone with the side effects. Most of us feel that the medications are worse than the ITP. Everyone hates Prednisone!

We have some people over 65 here. Hopefully, they will jump in, but speaking to people under 65 can be beneficial too.

Prednisone is nasty isn't it - but it does wonders for so many "things". It did put me in a semi-remission for years. But also I did refuse it when my count crashed because I was not going to look like the Pillsbury Dough Boy for our son's wedding.

What is the infusion your doctor is talking about? IVIg, WinRho, Rituxan?

My understanding is the older we get the more chance there is of count going down. But after having ITP for almost 25 years (oh my, I do have my 25th anniversary in a month or two - wow!) I know nothing is for certain with this disorder.

Did your doctor taper you off prednisone since you had been on it for 4 months? Sounds like you had a good response to it. What dose were you on?

I am over 65 and have ITP for 35+ years. You did not say how long since you were diagnosed with ITP but I do know that initially it is very overwhelming. So take a deep breath and find a doc familiar with ITP and research the various options.
I have had prednisone (hate it) rituxin, IVIG transfusions and now currently on Nplate.Ritxin did not work for me, IVIG transfusions raised my plt count but left me very sluggish and by the time I recovered it was time for the next transfusion. Nplate (weekly self injection) seems to be working - I have been on it for 18 months.
I think you have to find a treatment that works for you - with the help of a hematologist. This forum is a good source of information but each of us are individuals and can react in a different manner. BTW I would be excited if my plts were 50 - I operate on 35 - 50.
High plts everyone, Christine

50K? Sign me up for 50k too. I'd love that number!

Sorry, I am just shy of 61 years, so I can't answer for over 65.
I'll come back to this thread in 4.2 years.

.

Polly,

I am 60 and learned of my ITP about 18 months ago. This forum has really gotten me through it to this point. There are so many kind and caring people here to assist you where they can. My counts have pretty much stayed in the 20 to 30 range since I was diagnosed. I have been back to going to my oncologist every 2 weeks for monitoring. I still do anything that I want to do with in reason, run, swim, bike, etc. I would suggest that you get a medical ID tag of some sort. I wear a dog tag but I also have a couple of bracelets for when I dress up or swim. It is just good practice in my opinion. Other than that, just do what you feel like doing and within the realm of your doctors orders and go forth and enjoy life!

I too hate prednisone! I have had a couple rounds of IVIG and it works for a few weeks. Long enough to get me through a colonoscopy and some knee surgery. My last round of it, I got sick after the infusions, real sick, but it did work.

Getting old ain't for sissies!

Live, Love, and Laugh!

Jeff

weirdjack wrote: 50K? Sign me up for 50k too. I'd love that number!

Sorry, I am just shy of 61 years, so I can't answer for over 65.
I'll come back to this thread in 4.2 years.

.

Man! Your getting old!



Jeff (so much younger! haha)

Okay.. now I'm getting nervous. Everyone DOES seem younger. Why AREN"T there any ITPers over 65??

Polly sounds like you would rather not over-treat (not a real word). I am trying to taper prednisone. today just feeling very tired of medication side effects and stubborn low platelets, so yes I agree, its frustrating. My first hemo tried to keep my plates over 50K by giving me high doses of steroids- not good. Took me about 2 months and $1000. to get smart enough to leave. Scarey to think what would have happened if I'd used drugs for the past 5 years to keep my numbers over 50K. I'm just saying it would have taken a heck of a lot of drugs! good luck

Okay folks, I'm 73, and have had ITP since I was a young'un of 60. I have felt ITP a very inconvenient disorder, but many folks my age have problems a lot worse. I have not felt I have had to limit my activities because of ITP. I do put some effort into good health practices.

Unlike most folks on the forum, I don't hate prednisone, but my non-alarmist doctor (the BEST kind) has not prescribed big doses for me, and I have fortunately responded to smaller doses, and have had few bad side-effects--yet. (I'm usually on 5-10 mg/day, to keep my counts in the safe level--which is probably 30-ish for me.)

Splenectomy and rituxin both failed me. Splenectomy seems to be even less effective for older ITPers than for younger ITPers. I

My major complaint--starting 2-1/2 years ago--has been nosebleeds, which I hate, but which I've learned to manage pretty much myself with a little kit I carry with me at all times. My theory is that as I age, my skin--including my nostrils--is thinner and more susceptible to bleeds. I used to have no symptoms except bruising with low counts, and my doc and I were both happy if my platelets were at least 25K--but because of the nosebleeds, I like to be a little higher now.

I must confess to being slightly older than you Karen, and our immune systems are not what they used to be. Prednisiolone had no effect on my blood platelet counts ( they were at 6), but I did get most of those nasty side effects. Looking back 3 years ago I am personally pleased that steroids had no effect. After 3 weeks the Pred was tapered quickly from 60mg per day to 30mg,and subsequently to zero over 9 months. After the initial 3 weeks I was given IVIG infusion over 2days and my counts went to 240k within 3days, but declined over the next 4 weeks. When they were at 70 I was started on Mycophenolate Morfetil (MMF), and after what seemed eternity the counts rose from 30 to 140 over 6 months the MMF at 2g/day gives me a stable count, but a dose reduction gave a decrease in plate let numbers ,so back on to 1g every 12 hours. I had no side effects with the IVIG, but some digestive issues at the beginning with the MMF ( CellCept ). I am always aware that I am immunosupressed , and increasing age does not help in that matter. Because the skin does get thinner as we age we tend the bleed more easily, but I am lucky in that respect. I refused point blank to have a splenectomy as I do not want additional stress put on my immune system.I am afraid we all react differently to medication and our bleeding is also different in relation to the platelet count and fortunately I do not (up to now),bleed below 15k. My hospital consultant aims for a count of at least 50k to cover minor problems such as dental treatment

I have rambled on a bit, but at 75 I regard myself as being not much different from a 50year-old within the limitations of age. Hopefully you will find a medication which will increase those pesky numbers to a suitable level while having minimal side effects on you. Just stay positive,remember that a safe platelet count for you is not as high as what most people regard as normal. There are many of us elderly folk who lead normal,healthy lives.This week I look forward to meeting my elderly ITP friends at the ITP Conference near London.
Good luck,but just regard ITP as a nuisance as I do.
Derek

Posey:

There are plenty of ITP'ers over 65 here. My guess is that there are also a lot of people over 60 who do not use the Internet....some older folks are not Internet savvy. My Mom is one of them. When ITP is managed properly, the patient can live a perfectly normal life span. Don't be nervous!

Those who have posted have a fantastic attitude! I agree that getting to 65+ with few health problems other than ITP is great!

Posey maybe people just don't think of age - I don't, mainly because I don't "feel" my age or act it. I just don't know if we ever said "how old are you?" or started a thread asking for ages. And personally, age is just a number. I have friends who hate birthdays so won't say their age - I have friends who refuse to let their grandkids call them grandma because that makes them old to anyone who hears them being called that [how dumb!]. I love birthdays, means I lived another year so lets celebrate - I love being called Grandma, can't think of a greater honor!

Guess I never thought of age as being important or as being something to consider when treating, except for a splenectomy since it's said success rate drops the older you get.

Derek I like your attitude - "...I regard myself as being not much different from a 50year-old within the limitations of age."
Amen to that!! Have a great time at the conference in London and please report back to us on how it was, I'd like to hear about it & I'm sure others would too!

Actually.. I was just making a joke. rather lame one I guess if no one got it! :whistle:

Sorry Posey, didn't realize that was a joke. Next time maybe put a by it

poseymint wrote: Actually.. I was just making a joke. rather lame one I guess if no one got it! :whistle:

I thought you were serious too! Oh well, for any newbie who might read that and get a bit scared, the question has been dealt with.

Does it count if I feel over 65? (place appropriate smiley face here)

This year I will turn 47 I know I'm a young'n in my family that is considered old. Each generation lives a little longer than the one before my mom made it to 74! We die young.

People look at me and see my dark hair and the fact that I'm fairly young looking. What they do not see is the fact that I have multiple medical issue that leave my body feeling old. I have to get up 1hr earlier than most people just to work out the kinks!


To me age does not matter because you can have someone in their late 70's who runs around like they are in their 40's. Or someone in their 40's who hobble's around like they are in their 80's!

Julia - I get up three hours before I have to leave. It stinks if I have to be at a 9:00 appt because I have to get up at 6:00. I don't make appt's that early, but my Mom does and I've had to take her to a few. On any other normal day I set my alarm for 7:30 if I want to get anything done that day. I have to wait until meds and coffee kick in before I can get moving. Sometimes I'm really afraid of what I'm going to be like when I hit the 60's. I don't want to be dependent on anyone. It seems like things get worse every year; it's so frustrating. I'm thankful that I don't have ALS or anything like that though so there is a positive spin I can look at. Things can always be worse!

Sandi - I am afraid of what I will be like at 60. But it is people like you and me that make think age does not matter.

I've seen people in their 80's go for surgery and are in and out no complications nothing. And young people who have every complication available! People say age is a state of mind. I believe it is a state of mind and body!

So yes for ITP standards by differ for someone over 60 but I'm betting you'll find just as many younger people who would fit in that catagory!

Just posted under General Treatment - Seeking Info: trouble maintaining levels when I saw your post.
Am 67, female and also have always had reactions to meds I've taken. Surprisingly, my reactions to prednisone, IVIG and Rituxan have been minimal, but I'm not happy having been unable to maintain platelet count for 10 months now. The benadryl and tylenol given with IVIG and Rituxan seemed to prevent common side effects and I had no others. Higher dose prednisone gave some anxiety and a little weight gain, but nothing unmanageable, but I'm nervous about bone density and other longer-lasting effects. I know everyone is different,and feel I need to do research and then trust my doctor.

Judy, did the higher-dose prednisone (how high?) raise your platelets to a safe level, or was that just one treatment that didn't help? What level are you trying to reach?

I know the jury may be out on meds like Fosamax (alendronate), but I am usually on a half dose (35 mg/wk), and have, thus far, avoided osteoporosis during 13+ years on prednisone (but not big doses of prednisone).

Your plan to research is a good one.

Thanks, Karen! I was as high as 60mg, but the doc felt that it wasn't successful and only the IVIG did the temporary raise, then the rituxan temp to 110k, but all keep dropping back to 20's. At this point, from all I've read, I'd be happy with 30-50K, but would settle for over 20! He feels that under 30 requires intervention.