Frustrated with ITP and not sure be able to keep working as a physical therapist

[hannaITP]

I have been working as a PT for 20 years and in my mid 50-this was diagnosed with ITP, had multiple Rituximab infusions but still running low 20K (lowest was 14K), had no bleeds but bruised often and now can not work 10 hours days or keep up with physical load of being physical therapist due to fatigue associated with low platelet count. Do not want to get splenectomy due to work environment like hospitals or outpatient clinics. So I’m getting to a frustrated state of not knowing what to do next?????

[Ltinny]

Greetings, sorry to hear you are going through this. Understand your frustration, especially being a PT you are physically moving and moving people, the exhaustion is a definite hurdle.

If you work full time is there a possibility of going part time and trying that? I know everyone's finances are a big deciding factor, easier said that done. Or, if you could do per diem?

I think you are wise not to go with splenectomy unless that is the absolute last option. Your exposure risk is high in hospitals and clinics. Much too risky.

My ITP is from lupus. When I was diagnosed 20 years ago with lupus (age 43) I had been working in the health insurance for 17 years. My kids were still in middle school and high school, I was a single mom, and was volunteering as a home hospice support. My doctor flat out told me that I had to change careers, because I was sick every week from being in an office environment and catching everything that came along. My white count was 1.4. I am on immunosuppressants, so I have to be careful to stay out of the way of contagious illnesses which is a pain.

So, I went back to school, changed careers and had to work from home. About 10 years ago the ITP started. I have had no treatment, the lowest count at one point was 37. Saw a hematologist to rule out any other diagnosis. It was agreed we would wait and see, but if I dropped below 30 then treatment would be needed.

It sounds like you are not having symptoms like epistaxis or any other bleeding which is very good. Mostly the bruises and exhaustion. Same here, no symptoms except bruising and exhaustion. My rheumatologist was totally against a splenectomy. She said that it was not always successful "forever." She had seen cases where it elevated the platelet counts for awhile but then recurred. But the treatment she recommended if needed was Rituximab infusions. I declined any treatment as long as I was asymptomatic with the bleeding symptoms.

Interestingly, I ended up having major anxiety attacks worrying about platelets. I couldn't sleep even though I was on the verge of total exhaustion. So I started taking 3 mg of melatonin which my doc said was fine. The last count I had was 80 about 6 months ago. I took the melatonin to help me sleep, but found an article that said melatonin is given to ppl undergoing chemo in order to raise the platelet count. I don't know if mine was coincidental or not. But I still take the melatonin and have another appt in June for blood work, so we will see. Just an idea I wanted to share with you.

Have they determined the cause of the low platelets or is it idiopathic?

I don't know how you can do 10 hours a day, that is a grueling schedule esp with PT. Your frustration is totally understandable, ITP can turn your life upside down.

Hope this has been a little bit helpful. Keep in touch if you would like and let me know how things go. This health board is very helpful for moral support and informational as well.

Take care.

[hannaITP in reply to Ltinny]

Thank you for your reply, yes ITP is frustrating. I am impressed with your ability to handle change typically when being single parent, great job. I was and stil am a single, widowed parent but my kids are grown now and I did not had to deal with ITP until I was 55 and just really taking care of my self only. I also have hard time sleeping possible to anxiety of platelet count or loosing my job? but I will try melatonin, maybe it would help. Take care.

[sreea_dey90 in reply to hannaITP]

hello all my mother presently 57 is suffering from refractory itp i guess she was suspected with itp since childhood. but she nevr had any problem she was very active untill this year. she started bleeding from stools. we have taken ivig, revolade, rituximab still her count is below 8000 we dont have any other option left but for spleen operation i m realy very confused frustrated n upset she is undergoing so much pain dont know wat to do

[crissy22a]

Hi ask if you can try n,plate. It did the trick for me. Every other drug failed. Good luck

Crissy

[CDmom]

Hi hannaITP,

I was dx with ITP 1 year ago May 17.

First, The hemotologists thought that it was fineto give me platelet transfusions and IVIG and dex bursts.

Next we tried high dose pred and nplate with wildly varied platelet responses up to one million. LOL. Promacta 75mg did not work. Just IVIG and Dex but

Two weeks after that the crashed to as low as 1,000. So I was given IVIG and DEX again and again.

So long story short for basically 6 months every 2 weeks from May 17 until Oct 17 I got IVIG and dex bursts.

The following things happened all at once and I have been stable ever since the last IVIG in October with platelets at hanging out at about 160,000.

1. Someone suggested that I give my system a buffer of prednisone before I my platelets crash after the IVIG wore off. That I do very low dose prednisone about 20mg with a fastish wean down over one month

2. Then a friend recommedned a homeopathic doctor.

*Got rid of paracytes by rife treatments and antiparacyte med from vitamin Cottege

* got on immune balancing homeopathics and others

3. Went 100% gulten free - gluten triggers the immune system

4. Cut down to dairy 2-3 times a week

It is hard to know for sure what helped my body stop attacking itself but I am cautiously optimistic that this will be the new norm.

One question to you. Do you feel like the ITP was triggered by a virus, bacteria, mold, or stress? I got mine 2 weeks after I returned from Costa Rica and I got some terrible virus or bacteria and I feel that triggered my issue. But my western dr thought I was crazy and I was 57y/o and slam dunk ITP case. But finally after he saw that I was improved after homeopathy, he finally agreed there is a place for homeopathy in treating ITP!

Good Luck!!!!

[NickyD]

I had a splenectomy and am now prone to picking up all sorts of infections and bugs. Was unwell for 3 months over the winter. My advice is to avoid splenectomy if you can.

[sreea_dey90 in reply to NickyD]

i m so confused my mother has been bleeding since jan 2018 we have tried ivig revolade rituximab still she is bleeding no other option left for us i m so scared n confused

[Kyriak51]

Hi I’m a nurse and was unable to do 12 hour shifts in ICU so I switch Peds home health, smaller patients less stress. You could change to out patients PT and reduce your hours. I’m currently on weekly labs and Nplate injections to maintain my platelets between 15k to 60K which is good enough to function well. Be well