80+ year olds?

Anyone point me to threads with older people with ITP?

Hi,

You could try searching the old PDSA web site, which is still available for viewing, but no longer for posting

Kind Regards

Vanessa

I just did a search on the old site using the word "elderly", and it brought up quite a number of topics, but I am not sure how relevent they would be to your situation. Give it a go!

Hope you can find something helpful :laugh: .

Vanessa

There have been a few people in their 60's and 70's, but they don't post very often. The rest of us would be happy to talk to you!

It's for my mum,... she will be 85 in April. No more N Plate for her,... now it's Danazol.

Thank you.

My mom wants wants the group to know that her platelets were 49K yesterday and now they are down to 37K. Back in Jan. 1, 2010, 232K with N Plate,.... dropped every week since and went as low as 4K. Inpatient now with Danizol and Retoxan tomorrow. If the N Plate worked once,... why not again?

She only had one NPlate injection? NPlate is a maintenance drug - it should be given weekly or given when the counts are under 30 or 50. It's not a one time deal. I don't know why she couldn't use it again, but if she does, she should stick with it (rather, her doctor should stick with it). Maybe he has a good reason not to, but I don't know why he'd start it and stop it so quickly.

Danazol is a slow treatment and doesn't work often. Rituxan can take a few weeks to work but when it does, it can cause a decent remission - average is a year.

Tell your Mom I said hi and that she's doing pretty well at 37k. "Normal" may not be the goal here, "safe" counts are just as good. Due to her age though, "safe" for her might be higher than the average person, but it's better than single digits!

I agree, 37 is pretty good, but a safe count for her might be a bit higher. I was told Nplate is to get like Sandi said safe counts, not normal counts. I have just started it, not sure what my count is this week, i have a blood test and another injection of it on friday. You might want to ask the doctor why he hasn't continued the nplate if it was starting to give her good results.

My mum had the 4 rounds of N Plate. One of the warnings on N Plate say it can actually shorten life,.... speed up ITP. My mum is about 5'5" and I think about 110 lbs.. She is having a second round of Retuxan today.

BTW,... she is in a prestigious NYC hospital. I'd like to know of other people on PDSA that are in NYC.

I also wish she would be open to eating fresh cooked kale,... and staying away from *bad* foods. She used to drink a glass of tonic (quinine) water before bedtime,... not any more.

I've never heard the "shorten life" and "speed up ITP" thing. If that were true, they wouldn't be giving it to children. It can cause bone marrow reticulin, but that has been shown to be fully reversible when the drug is stopped. Also, if treatment with NPlate is stopped, counts can bottom out - that is a known side effect.

surfnyc have you seen the treatment section? At the top of the page under the PDSA logo you will see a line and in it is: Home - About ITP - Treatments etc
Put your cursor on Treatments and you'll see Conventional - Complementary - Treatment Resources
Put your cursor on Conventional and then move it over to Platelet Growth Factors and click on it. Once there you can read about NPlate and also some websites are given for it.
Or click here
www.pdsa.org/treatments/conventional/platelet-growth-factors.html

Regarding kale - I'm with your Mom, I don't want to eat it. Bok Choy yes, kale no.

Tell your Mom I'm rooting for her!

Sandi - watch it, there are probably more here in their 60s than you realize

My mum has probably been effected by some disorder since August. Almost the middle of March now and the new diagnosis is,..... drum roll please,... ITP, MGUS, and MDS. Before it was only ITP,... it was Multiple Myoloma.

does your mother have multiple myeloma?

MDS can be difficult to diagnose and can take time. Her platelets are probably low due to the MDS, not ITP. Now that you know, she can get the proper treatment. Good luck to both of you - I hope she improves. My friends mother in law has MDS and she is doing quite well after treatment. She is 80 years old.

Thank you.

FYI,... article in the NY Times:

Jana Skewes

Chief executive, Shared Health, Chattanooga, Tenn.

March 12, 2010
Keeping It All in Writing

Here is the latest,.... en.wikipedia.org/wiki/Ciclosporin 75mg and 25mg , to start Monday. Did a search for Ciclosporin on old and new discussions groups and didn't find any mention.

It is listed in the treatment section [above I told you how to get to that section here]:
www.pdsa.org/treatments/conventional/immunosuppressants.html
Cyclosporine
cyclosporine (ex. Sandimmune) blocks the action of T-cells, a type of white blood cell responsible for fighting infections.4 For patients with ITP, the response rate in one study was 55%, but the relapse rate was high 7 Cyclosporine may damage the kidneys, raise blood pressure, and increase your risk of developing cancer. Side effects include flu-like symptoms, coughing, difficult or painful urination, changes in the skin, fatigue, and swollen glands. 4

Grapefruit juice ,and perhaps Sun Drop or Fresca (citrus sodas), can increase the level of circulating cyclosporine.5 St. John's wort reduces the concentration of cyclosporine, making it less effective.6


Best wishes to your Mom!


If you go to the old site and click on search and put in cyclosporine in the search part and then click the box by Archived Posts it will take a long time but eventually there will come up posts about cyclosporine - I got 2 pages that's why I can't cross-reference them for you.

My sister wrote me:

As i asked mum, if not this, what are other alternative? I understand this is a 1 month trial, but how long before they start to see the results of it? If a after 1 month they don't see the result, what then? Have they seen other cases of this before or how often do they use it in this way? With what do they plan on controlling the stomach pain she WILL experience with this? Have they spoke to or taught her about prevention during this time?

I replied:

We have to be careful asking questions that we are not ready for answers we might get. John Holzach has been on cyclosporine for his eye disease. I'm worried there are not alternatives. You know then? WILL experience pain? Prevention???,.... yeah,... don't cut yourself.

I'm worried her hemotologist is not too hopeful,... instead of having a sit down with her,... she passes her by in the waiting room with a passing wave. I thinking it is more of a bye wave,... than a hi wave.

I'll go dig out the 2 pages of Cyclosporine references from the old discussion board.

Mahalo and Aloha

Here is the latest,... my mum has Mgus and ITP. I happened to mention to the PA today that I was active on a ITP website and she replied with "there are lots of them",... she didn't volenteer or ask PDSA.ORG?? . Anyway,... either the N Plate is working again or the Cyclosporine is working,... or the combination of the two,... because her platelets are up.

Is anyone familiar with problems between small pharmacies and large ones? There is some problem I don't understand regarding cyclosporine being covered under medicaid and/or medicare. The doctor doesn't want to use a big chain pharmacy down the block that starts with a W and wants to go with a smaller pharmacist out in Queens (10 miles away). The PA says the big pharmacy is going to come back and say we made a mistake and there is a charge, $400, where as the smaller pharmacy will charge $200 from the start. Also, the prescriptions have to be written,... 25mgs + 25megs + 25megs,... not 25megs + 50mgs. Anyone have any idea what is going on?

I'm 63 and have not thought of my age as being a big factor in reading and learning about ITP with the exception of my decision regarding getting a spleenectomy. My age and some of the predictions of the lack of success in people over 50 convinced me to keep my spleen.
My counts are usually in the 30/50 range, and I only treat when I am below 20.
At this point I am only treating with IVIG. Rituxin did not result in significant changes for me, but I am convinced that it increases the ability of IVIG to maintain my counts for longer periods of time. I have yet to convince my hematologist of this.
Steroids are very hard on me. Joint pain grew worse after taper, and I also have a large spare tire that came after a decadron pulse that does not want to go away...even with exercise.
We all react differently to treatment...age, sex, nationality...I haven't seen any predictors of likelyhood of success or complications that can be generalized. I would say it is our own personal medical history that guides treatment along with a
strong dialogue with our physician.
Jean

I work for a major prescription card benefit manager. Medicare Part D has many options many of which are provided by private plans that have different preferred drugs based on negotiations they make with manufacturers. Take a look at the Medicare Prescription Drug Plan Finder at www.medicare.gov .

hi, I'm going back to one of your first comments, about your mom being 5'5" and 110 lbs. She is little, is anything being done for her to add weight? I'm 5'4" and if my weight drops below 120, I feel exhausted and it's difficult for me to do the every day normal things. I think my body almost shuts down to save energy. If she is still in the hospital she is probably being monitored but considering getting something like Ensure for when she leaves the hospital so that she can put weight on. I know that there are other products like this one and some also contain less sugar, I only recommend it because my 99 year old grandmother has been drinking ensure for years now to help her keep her weight. Due to previous radiation treatment she can't have solid foods, so every day she drinks a can or two.
Michel

Anyone that cares to hear some actual dialog straight from the doctors mouth can email me for the password for this link:
bit.ly/96Aefm

85 years old and you can find me on face book Norine Perreault also my blog.
My platelets are up again to 97. I hope they do not take me off the Nplate again.
It really works for me, my platelets went up to 319, then the doctor took me off
completely, and they dropped away down to 4. I get the shot in my stomach every
Wednesday. I get 1000 units. When platelets gets over 200, I think they may just cut the dose down. Norine

My mother's platelets have been up and down, they are up now. She is still on N Plate. She had been on Cyclosporine and I think she is currently completely off of steroids. She feels week and nauseous in the morning, better the rest of the day. She is currently dealing with a broken left arm/wrist. Does anyone know why she has the morning symptoms? Will they ever go away? Mahalo and aloha.

My mother is still above ground. Same as usual,... tired, aches and pains. She has had about 5 blood transfusions, about every 2 weeks.

My mother is 88 y.o. and is trying to make it to Christmas to see family visit from Europe. I think her heart is failing, although the doctors won't say so. She has a top hemo. and gastro. ,… the cardio. has to come through the clinic,... geriatric primary (which she doesn't really have),… or something to that effect. My sisters want to play doctor, I want to trust the doctors. We are a constant presence at the hospital.

I'm also reading a book by Dr. Brendan Reilly called One Doctor, he is affiliated with the hospital, NYP.org

Aloha

I pray the Angles watch over your mother and she makes it to see the family from Europe. I also pray you are well.

Cindy Ann