Feeling sad

[wjoyful]

So I went down to a count of 10 two weeks ago and the hematologist put me back on steroids. My level increased to 38 after one week and the hematologist said the steroids are not working so no point in doing it so I’m tapering after two weeks by 10 mg a week. He says the last thing is to remove my spleen. So that’s what has me feeling sad because I’m afraid to do it. Everyone says it doesn’t work but he says it’s the only way to fix things. To put the icing on the cake my boss says his business isn’t making any money so he has to cut my hours or I can decide if I want him to lay me off due to shortage of work. When it rains it pours. Just had to vent. Thanks everyone.

[SoporRose]

I am so sorry! You have every reason to feel sad. Can you see another doctor for a second opinion? What else have you tried?

Ruth

[wjoyful in reply to SoporRose]

It took them 6 months to find a hematologist. I was diagnosed with ITP May 2017. So far, they tried steroids, (three times) ivig once and they want to do it again soon. I feel like I’m physically and mentally excused. I called my np yesterday and she suggested I take a leave of absence till I see my hematologist April 24. I feel bad to do that to my boss but really he caused me so much stress by telling me he can’t give me full-time hours. My np thinks with being on the steroids I should take some time off. The hematologist wands to take my spleen out if the ivig doesn’t work. But if that doesn’t work, what then?

[HOLCOTT]

Hello . Poor you. How liw were youecplatea to start woth? My heama wpuld have said steroids worked.

My platelets are 20 to 30 kept there on low dose steroids ( 10 mg per week) she is happy with that. I live in uk. You?

Do you have symptoms?

Me just a little brushing and tired

Tale your time about the spleen decis ion. It's a biggie.

[wjoyful in reply to HOLCOTT]

I’m in ont Canada. Funny my np thought all was good. I’m going to insist on a indium test to see if it really is my spleen before they do anything. I have written down a bunch of questions for him like, what happens if it doesn’t work. I don’t have benefits to cover drugs for the rest of my life. I’m going to try a detox stuff that someone on here told me about. It brought her sons platelets up from 9 to 220. I know children tend to get better but it’s worth a try. I only get bleeding gums, nose and bruising when I go below 30. Crossing my fingers they go up again this week. Then I start a taper. Yesterday was a day of crying and a pity party day but I’m standing tall today and back in the fight. Thanks for responding

[Fionn123]

Hi, sorry to hear you're so sad. I have had itp since March 2012. I was put on steroids (100 mg) a day when my count was 4, they shot up to 98 so my haemotologist tapered me off them and they crashed. She told me they hadn't worked so she wanted to take my spleen out. I refused. Asked to go back on steroids but to come off them more slowly. This they did then I had a course of rituxamab injections. I haven't been on meds since April 2013. My count stays around 48 and I live with it. Fatigue is the worse but as other people on this site will say you have to look after yourself. Eat healthy and vitamin supplements help with the fatigue. Do your research into a splenectomy - it has worked for some but it's not guaranteed. Hope you feel better soon.

[Kyriak51]

Jokpo

[Kyriak51]

Hi wjoyful, I don’t understand your platelets did respond to 38; why is the hematologist tapering you off? I don’t remember your treatment regimen, did you have Retuxan, Promacta (eltrombopag) or Nplate? You need a second opinion! What dose were on when your platelets increased to 38k? I know the side effects of steroids are unpleasant but you can function at a level of 38K I did for several years. Please ask for other treatments or see someone else.

Many people have very good response to a splenectomy and can be done by laparoscopic with minimal bleeding. However, no surgeon would operate on a patient with a platelet count of 10k. I don’t know what your hematologist is thinking, recommending a splenectomy while decreasing the steroids. I hope there’s more than ONE hematologist nearby. Please let me know how doing.

[wjoyful in reply to Kyriak51]

Hi. There is a shortage of dr in general in northern Ontario. When I got sick last May there was no hematologist to take me and I had no family dr only a np.

I finally got a hematologist in dec 2017. They have tried nothing but steroids and ivig. I went for 5 months at 30 and then the count started falling and got put back on steroids. I get bad muscle cramps everywhere with prednesone so sleep is tough. I also have an enlarged heart through myocarditis. I am on a beta blocker and ace inhibitor and my heart recovered but I still have to stay on those drugs. They are a blood thinner yet they tell me it shouldn’t effect my platelets. Also water pills for swelling. So there is no second opinion coming because no way to get one. I asked about other meds and he said no that next thing to do is remove spleen. I am not comfortable with that so when I go April 24 I will tell him that. I have to get hold of my benefits and see what is covered. It’s tough having dr shortages so you have to work with what you got. Thanks for the info.

[Kyriak51 in reply to wjoyful]

Just read this and noted that you’re on “blood thinners”, what med are you on? There are so many medications those of us with ITP can’t take because they interfere with platelet function such as aspirin, nonsteroidals anti-inflammatory i.e. Motrin, Advil, naproxen, antidepressant and anticoagulants ( heparin). Please let me know what “blood thinners” you’re on.

[wjoyful in reply to Kyriak51]

I’m on bisoprolol and ramipril. I’ve asked so many times about these meds and they keep telling me not to worry. The ITP was found by accident when I went to the hospital for shortness of breath. I thought I was having an asthma attack but there was fluid around my heart. So heart failure was the diag. Two days later after giving me asprin, and beta blockers they said my platelets were low.

Turns out I had myocarditis. My heart has recovered but they keep me on an ace inhibitor and beta blocker. I’m seeing my heart doc next Monday. I’m would like to come off of at least the beta blocker if I can.

[Kyriak51 in reply to wjoyful]

Please tell me that you’re NOT still on aspirin! Have you been diagnosed with Immune ITP or was your drop in platelets due to your ASPIRIN use???? As your platelets droped 2 days after starting aspirin. No nurse let a doctor would give a patient with a diagnosis of ITP. Please let me know

[wjoyful in reply to Kyriak51]

No haven’t been taking asprin since last May when I had heart failure. I didn’t get diagnosed with ITP until after they gave me all the asprin and blood thinners. I had one nurse that came in to give my pills and she decided not to give me my beta blocker and asprin.

She made a judgment call and they never put me back on them. The drop I just had, I have no idea why it dropped. My count was 55 today. So I’m feeling good.

[Kyriak51 in reply to wjoyful]

Good to know that a nurse didn’t give you the aspirin, did the doctor recognize his mistake and discuss that with you? Just to clarify you are not on any other “blood thinners” correct? Good to hear your platelets are up, I have labs tomorrow hopefully my platelets are at least 50K

[wjoyful in reply to Kyriak51]

I am on two heart pills still. Bisoprolol and ramapril. They are high blood pressure meds. I’m not sure if they are thinners. Good luck with labs. Think positive and they will be up.

[Kyriak51 in reply to wjoyful]

Thanks, keep those platelets up!

[HDuggan]

Oh, wyjoyful, I am so sorry to hear all that. I firmly believe that stress affects itp greatly and added work stress can't be helping the situation. Steroids stopped working as good for me as well hence my splenectomy. I just had it yesterday morning and am hurting pretty bad. Hoping the pain subsides because right now I'm regretting my decision. I'm sure once the pain goes away I'll have a better outlook. Haven't gotten my counts yet, but I'm sure my platelets will be high with no spleen. Will let you know later in the week if it worked. Good luck to you. Sending tons of positive vibes your way for work and health answers.

[Kyriak51]

Hi wjoyful, I just read your profile it seems we share the same birthday by one day and live in the same zip code. You are close to UC medical center and after 25 years of nursing at UC , I know most of the Hem/Onc doctors and I don’t think any of them would just throw in the towel and stop treatment. Where are you receiving treatment Northwestern, Rush, UIC or University of Chicago. It’s possible that we are neighbors, I live across the street from Regents Park we could meet for coffee. Be well

[wjoyful in reply to Kyriak51]

I am in Ontario Canada and my dr is in New Market. We are not neighbors but it would have been nice if we were.

[Kyriak51]

Is your birthday Jan. 6 1945 or are my platelets so low and not thinking clearly thatI was viewing my profile page?

[Kyriak51]

Hi, I just realized what I did wrong. When I select your post from my email it opens a page with your post, beneath that is a green “Reply” box. At bottom of page there 4 options: profile, write a post, meet others and search.....Computer illiterate as I am, I though the “profile” referred to you, wrong, it was my profile. As I’ve said befor I DO NOT CLEARLY with count of 10k or less; perhaps I’m having small cerebral bleeds affecting my ability to think and reason. Had I been thinking clearly I would have remembered you lived in Canada and had to travel two hours to your hematologist. Sorry I wasted your time with my confusion. I’m having Labs and Nplat tomorrow, maybe my platelets are lower. Have a good night

[Kyriak51]

Hi wjoyful, I thought Canada had universal health care, am I wrong? I know medication are cheaper on your side of the border; many Americans cross over to save money. I don’t know why your hematologist doesn’t keep you on low dose steroids for a longer time instead of tapering off when you reach 30K. Steroids are cheaper than most other meds. ( 10 tabs of prednisone 20mg cost $3-4.00). IVIG which didn’t work for me cost $10 to $20,000 per treatment, Rituxan costs $10,000 per infusion weekly times four weeks and my Nplate cost $5000.00 per 250mcg; compared to these drugs prednisone is cheap. I know many transplant patients who must be on life long steroids to survive.

You obviously you respond to prednisone ( 30k) why not continue instead of tapering off? I know steroid side effects are unpleasant, but a count of 30k would allow you to live a fairly active life, I was able to work in ICU full time for many years. Please talk to your hematologist and remember when you get to end of your rope tie a knot and HANG IN THERE!!!!!! Be well

[wjoyful in reply to Kyriak51]

No we don’t have universal health care. Things are only covered if you are in hospital. The ministry of health says that there are three things that must be tried before they will help with meds. Prednisone, ivig, and spleen removal. I can’t stay on prednisone because I have an enlarged heart and my cardiologist wants me off the steroids. I’m going to send in a estimate request to my private health benefits to see if nplate is covered all or partially.

It’s been s rough two weeks at 50 mg but I’m now going to 40 mg and 30 mg starts this sat coming. They will be keeping me on 5 mg when it gets down to that level for 4 weeks so that my hematologist who sees me on April 24th can figure out what to do. I see the cardiologist this Monday and as usual when I’m on steroids I have wheezing issues and then I have to take water pills.

So to make a long story short I would have to have my spleen out and if it didn’t work then they will help with meds. Lol.

Totally a catch 22.

[Kyriak51]

Sorry, my last post should have read: No nurses let alone a doctor would GIVE a patient diagnosed with ITP ASPIRIN!!!!!