Medication

[Kazpig1]

Hi

Does anyone else find the treatment for ITP worse than ITP itself ? I have been on various treatments for 2 years now and so far nothing has worked (platelets between 0 - 4 usually). Has anyone, following discussion with their doctor ever stopped treatment due to medication side effects, and if so what happened.

[AWSAR]

First of all Dr will never stop ur medicine . Side effects are there always its just how worse it is. do u have any active bleeding?

[Kazpig1 in reply to AWSAR]

Quite minimal compared to what it was. Used to bleed if platelets went below eleven but they can be below 4 now befor I get petechia

[sailor]

The last thing you should do, is stop medication without consultation. There are numerous medications available, all have varying side effects. It is finding one that works for you both in raising the count and little side effects. You must work with your haematologist, stopping medication without agreement could be disastrous.

[Kazpig1 in reply to sailor]

I know and have worked with haematologist all the way. She says she only has 2 treatment options left now as nothing has worked. Cannot have a splenectomy as destruction is in the liver

[Lin6]

I was put on dexamethasone for 4 days when I was first diagnosed with a count of 7 and bleeding. It made me so ill my doctor changed it to prednisone which i took for 6 months but so lucky now as I'm managing with no medication my count at present is 156 tho I think it will drop as it Been on high dose of antibiotics for 2 wks as have had pneumonia.

Hope you find a drug that helps you. Take care

Lin

[Kazpig1 in reply to Lin6]

Thank you for your advice. I find my platelet count goes up when I am on antibiotics, how strange s that. Good luck with the counts and hope you feel better soon

[AnthonyHeard Administrator ITP Support Association]

Hello Kazpig, I have had ITP for 11 years and have had various treatments, it is a matter of finding the one that works best for each individual. Unfortunately there is no on single treatment that works for everyone. We are all different and respond differently to each of the many treatment options. I am now on Mycophenolate Mofetil (MMF) and that has worked well for me since April 2016 with just a few side effects (nausea, headaches but bearable). All the treatments have side effects and again we all get the side effects differently.

If you want to have a look at my ITP story and all the treatments I have had please do check out my ITP blog at ....anthonyheard.simplesite.com

[Kazpig1 in reply to AnthonyHeard]

Thank you for your advice. I read your blog with great interest and look forward to each one. The blog has given me a good insight into the condition and has made me laugh on occasion. Keep it up

[ITPAffecty]

My case also same like yours. For 2 yrs tried different treatments, finally Elthrombopag was kind of better, taking it for 15 days bought my count to 80k but stopping that again brings down(It's too costly to take it long term). But other than common problems like nose bleeding, bruises and heavy menstrual bleeding, I was quite okay to lead normal life. So for now since 3 yrs I am managing without medication with 0-15k counts. When I feel too much bruised, I take 3 4 Elthrombopag tablets just for my satisfaction. Somehow I am managing without going to doctors but that fear is always there and mentally will always be ready to get hospitalized if needed.

[technogeek]

If you experience treatment that do not work they should be abandoned. If they work to some extent, you are better off for some time. Yes drugs are known to have bad side effects. IVIG treatment with transfusion of platelets seems to be free of side effects. And for many Rituxan can be tolerated with little side effect. It all depends on the person. Depending on the cause of you thrombocytopenia, different treatments are indicated. You can seek natural ways to increase platelets such as papaya leaf extract But you need to keep tabs on your platelets to avoid a severe bleed scenario. I am very sorry you have joined the rest of us with this wierd bothersome condition. I pray for more and better solutions to help people improve and live happy and healthy.

[crissy22a]

Hi, yes totally. Its a roller coaster. And very stressful time. Im 6 years in now. And after researching for the last 6 years. When you go into the itp world. You dont have a clue how its go to pan out . But, basically . The doctors go through a protocol of treatments. 1, steroids, 2 , immunoglobulin, 3, rituximab, 4 , cant remember, 5, cant remember. 6, N, Plate. I have had soooo many in fact all the treatments. N, plate the last treatment , the most expensive of all. Has been a god send to me. But some times I think how ill all the other treatments made me feel. And what a total waste of time , and definitely unwanted terrible , horrible side effects. I am now stronger and happier because of the N, plate, thank god I say . I hope this gives anyone a little insight into nmy itp . Good luck all . X

[Suntied]

Nothing worked for me predisone ivig rituxan none worked. N Plate I have been on for year and a half it works but side effects last 3 days headache tired diarrhea foggy brain no motivation. Then my numb er s go up to 200000 for a week then drop to 120000. Feel like I am on a merry go round. NPLATE maintains me. Larger shot lasts me about 3 weeks but the larger shot gives me more intense side effects. So I am presently taking weekly dose.