Mother diagnosed with ITP over the holidays

Hi there,

I'm writing in regards to my 60-something year old mother, who was recently diagnosed with ITP over the holidays. She experienced the usual signs - sudden and severe bruising, bleeding gums and mouth - which prompted her to go to the ER. Over the past three weeks, she has been discharged and readmitted three times and is currently still at the hospital.

At first, with immunoglobulin and platelet infusions, she responded well. However, the platelets plummeted after this treatment. Next, she was given dexamethadone (sp) which also prompted a modest increase in platelets but they still sank back down to around 3-5,000 and remain at that level now. She is currently on her second dose of Rituximab and has received one N-plate injection at the end of last week; she also is taking prednisone orally daily. They performed a Bone Marrow Biopsy on her and we are also awaiting those results, which is perhaps what is making me the most anxious. I read they are hesitant to use N-plate in those with potential leukemia, which has helped relieve some anxiety, but my mind will not be eased until we hear the official diagnosis.

I live and work far away from my family and just returned to work this week. I struggle with leaving her in such a precarious situation but also acknowledge it is a waiting game. It has been such a roller coaster watching the platelet numbers and having her discharged only to return with decreasing platelets again. Just reading this forum has offered some solace in knowing others have rode the same roller coaster. I'd be interested in hearing your stories!

xx

KMC:

Welcome to the Forum. You hit the nail on the head that ITP is a series of ups and downs. It can take time to find the right treatment.

Platelet transfusions never work for ITP and are pretty much useless. They should only be used if serious bleeding is occurring. IVIG is almost always temporary and is usually a waste of time. It is a band-aid solution but is a good rescue treatment.

I think the doctors are using the kitchen sink approach for your Mom and that isn't always the best idea. N-Plate has a very good success rate by itself, so the other treatments are probably just causing unnecessary side effects, expense and toxicity. When you use more than one treatment, you don't know which one actually worked. Also, there is a risk that counts will shoot up and cause other problems. It's not a very controlled situation. I know the goal seems to be to get the counts up as soon as possible, but it doesn't have to be a race. Most people are safe with counts around 20k to 30k. Older individuals do have a higher risk of bleeding, but it seems as though your Mom handled the low counts fairly well (unless there was something that you didn't mention).

The main reason for a bone marrow biopsy in people over 60 is the possibility of MDS. Hopefully, the results will come back okay.

Please stick with us. You will learn a lot about ITP. The PDSA has the most recent information, even more so than many doctors. Keep us updated on her progress!

Thanks for your reply! I agree with your opinion that perhaps they are doing too much at once; initially I was happy that they were trying more than one treatment - anything to get those counts up - but then we aren't positive what is working, either.

She does seem to handle the low counts well, she is in good spirits most of the time (as much as someone can be while hospitalized for a period of time) and feels fine otherwise. The bruising, however, is excessive which worries me that a spontaneous bleed may start internally. For that, I am glad she is still hospitalized but it also certainly worries me to be far away from home.

As a bystander to all of this, it means so much to be able to discuss with others - especially those who have gone through it before. Most people assume it is like a headache (I saw that analogy on another thread) that can be fixed and normal life resumes, which can add to the frustration of living with this new diagnosis.

Thank you again!

Many people do not get what "chronic" means. ITP can be chronic, but it can also usually be managed quite well. There are also remissions that occur frequently that can last for long periods of time.

Did your Mom have any vaccines or take any new medications prior to this?

She did switch a gout medication (Coltricine - sp?) between a generic and name brand (or vice versa) which is said to cause ITP. She has also been on various long term medications throughout her life, she had a transplant about two decades ago, and I am convinced that long term medication regiment may have something to do with it as well!

It's hard to say. Everyone here has entirely different stories about what happened or didn't happen prior to diagnosis. The generally accepted theory is that some individuals have a propensity toward autoimmune disorders and something comes along and triggers it.

I hope her counts respond soon.

Just an update - bone marrow came back as functioning normally, which was a relief. They will administer the third round of Rituximab and 'double the dose' of N-plate tomorrow. They are also changing her anti-rejection drug (from her transplant) to see if this helps - which has us all a little worried but the doctors have for the most part convinced her it is safe to do. Platelets went up marginally (from 'a working 4', the doctor's words, meaning that they weren't decreasing, to 6 today) - happy for the small bump but have learned not to watch this number too closely.

Again, it's nice to have this place to update and talk to; especially for the sake that folks here know what i'm even talking about medically-speaking!

We are collectively a fairly informed group. Some of us have been here for a very long time and have researched ITP and it's treatments for years. The PDSA has the support of the top ITP Specialists in the world, and they work with the PDSA to inform patients of the current options.

I hope your Mom responds soon. Sometimes counts just shoot up when you least expect it. ITP can require patience which can be hard.