Hi all
Can you share your thoughts as to what constitutes being “in remission” for someone who has ITP?
I’ve read different perspectives ranging from it meaning that no medication or intervention is required to maintain a count in the normal range of 150-400 through to taking medication but staying consistently in the 50+ range.
As ever, many thanks for your help and views.
Hi I was diagnosed July 15, my count was 7 at the start. Iv now been told I'm in remission as since taking 80mg steroids daily my count went back up to 170. It's starting to drop but still very good at 138 with no medication,
I had pneumonia April last year for some unknown reason my platelets dropped a little then went right up with no treatment other than 3 wks of high antibiotics? I feel very very lucky.
I hope your asking cause your Daughter is in remission too.
All the best
Lin
Hi Bellazac1971... I have IT and was diagnosed at age 3. I spent 10 years on pretisone, in and out of hospitals, blood transfusions, dangerous platelets account that nothing was helping.
At the age of 13 my parents took me to Cleveland clinic for a second opinion. The doctors highly recommended for my spleen to be removed.
They removed my spleen and since the age of 13, I have been in remission. My platelets are good now, in the high range but good.
Since removing my spleen, I have spent the last 37 years not able to fight infections.... ALWAYS SICK. Every 5 years I get a pneumonia vaccine which helps for a little while.
Just recently in the last 2 years I have had swollen lymph nodes, in very place lymph nodes could swell.
I have been referred to oncologist, hematologist, gasterolgist and now my next referral is with hepatologist.
I was just diagnosed with PBC, cirrhosis of the liver. Possibly could all be from not have no spleen and has now affected my liver.
What a terrible shame. I have both ITP and PBC and I have been told that people with autoimmune conditions usually have more than one. I also have had to have my thyroid removed and have eczema what I am trying to say is that possibly your PBC has nothing to do with the removal of your spleen. However you have convinced me if I needed convincing that removal of ones spleen is not a good idea. Very good luck with your appointments my PBC is helped with Ursodexocholic Acid capsules and a low fat diet my ITP with Romiplostin injections i I hope this helps.
Hello thanks for the response back. I am sorry you are also battling both. My ITP is in remission and I've had no complications except my immune system.
I feel my splenectomy saved my life at the time, so I am grateful my parents took the risk.
I did not realize that bc of having one autoimmune disease you could be susceptible for another. I just was diagnosed with PBC last week, well officially diagnosed. My doctor suspected that's what it was, after my liver biopsy is when I was officially diagnosed.
How are you feeling? How long have you had both diagnosis. I guess I'm alittle surprised, I'm new to this sight, I didn't think that bc of one you could have another auto immune disease. But it makes sense.
Thanks for the information and I'd love to hear more about you and your health and your story.
Hi Teri I was diagnosed with PBC in 1999 after taking part in medical research into the effects of HRT on the heart. The diagnosis of PBC was a shock the word cirrhosis obviously being connected to Alcohol and I very rarely drank alcohol as it didn’t make me feel particularly good. Obviously my liver hated it and to deal with it made me feel very sleepy not the sociable effect most people experience!. Initially I was quite scared “How long did I have?” The answer to that I hope is that if I take the medication be vaccinated against Hepatitis A&B have an annual ultra sound and visit my Specialist once a year I will be fine. Also good advice is follow a low fat diet and avoid alcohol. I am 72 and apart from Brain Fog and very occasional chronic tiredness I am great and enjoy my life so you do the same. You die if you worry you die if you don’t. Xx
I have been in 'remission' for 3.5 years now and maintain a platelet count of over 200 without any medication at all. After being considered a severe refractory case with a lowest reading of 0, one day my autoimmune system just went back to normal and stopped destroying my platelets. At the time I was on a combination of NPlate, Cyclosporine and Prednisone and there is some thought (but no one can be sure) that this cocktail of treatments has resulted in remission in a number of cases.
My life is now back to normal and, be it right or wrong, I have the mindset that I have been cured rather than just in remission.
For me, all treatments failed and now last one as per my hemo is NPlate, gonna try next week. I have no hopes, but will remember your combination of meds.!! fingers crossed.!!
Wish u permanent remission and healthy life.!!
Fluctuating platelets
Is Nplate a recommended treatment
ITP - Not Taking Medication - Feedback
