Hi Sandi and Ben,
I am retired Commander BS Rainu from India. My wife 61 years of age is diaognised with ITP, ANA Positive (+++) and SLE. She is under treatment and not repsonding to any treatment. Presently she is given 3rd dose of Rituximab injection. Total 4 injections planned with weekly interval. Her Hb also dropped to 7.3 and platelets 2000. Yesterday they gave transfussion of blood and donors platelets. Doctor advised that Rituximab effect may take one month to come up. If not improved after 4 injection of Rituximab, he may plan spleenectomy. She was initially detected with SLE and was given Hydrochloroquine HCQ 200 for 2 to three month in 2018 and subsequently it was observed that her platelets had been below 100X10^3. Bone Marrow biopsy result is normal with no defect. I am not able to decipher whether it i drug induced or some other reason because before 2018 there was no issue but her ESR was always very high for which invetigation started leading to disogised to SLE and then ITP. If anyone in the forum can share similar expeience and how one got cured, that would go on longway to treat my wife. If possible to speak with anyone. please let me know and free to call me any time.
Cdr BS Rainu (Retd.)
Mob: (+91) 9833231800
ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
Thank you received: 581
Sorry to hear about your wife's troubles. Unfortunately there isno guarantee ITP can be cured, but it can be managed.
Rituximab can take a while to work. This article onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2141.2004.04889.x examines Rituximab for ITP and states "Twenty‐nine of the 31 responders (94%) had a platelet increase to >50 within 8 weeks of the initial infusion. The median time to achieve this count was 3·5 weeks (range 1–19 weeks).
Many more medical options can be tried before anything as drastic as a splenectomy is considered. There is absolutely no guarantee a splenectomy will work and it is not without its own risks particularly in someone in their 60s.
Are Indium 111 scans available in India? One will not indicate if a splenectomy will work but will indicate if it would fail to work. Over here in the UK we can have one prior to considering surgery. Ask your doctor who I hope is a haematologist.
Always ask a doctor for the evidence base they are working from. This will indicate if their knowledge is up to date. Anything over 8 years old is considered none current in medicine these days. This link www.ncbi.nlm.nih.gov/pmc/articles/PMC6963252/ will take you to the most recent (2019) international guidelines for ITP treatment.
At the outset, my wife joins me thanking you for a very positive repsonse. Her treatment is on from 2018 with steroid and in between for two years she was ok and was maintaining her platelet >50. In Feb 2021 she had a severe pain under the left lobe of cage and CT scan was taken in emregncy shown that her lungs are havin non tappable fluid which could be due to unnoticed Pneomonia in the past. She was given antibiotics "LIvomax 500" BD for 10 days. Meanwhile her blood test CBC Vit D and may more tests were ordered. It is at that time notices that her platelets dropped to 13000 which doctro say is refarctory ITP. She was rushed to ER and straight to ICU for Steroid through IV. Tab Eltrombopag 50 Mg started. Platelet transfusion was given. She was discharges after 3 days with platelets 46000. on 05 Mar 21 during review platelets count reached to 173x10^3. On 14 Mar she got some black patches on her legs and had lots of severe cramps. She was rushed again to ER and ICU. The paltelet this time reduces to 2000 (This is when all medication goin on and with in 9 days). Once gaian steroid by IV, Blood and platelet transfussion. Elatromobag increased to 150 Mg OD, MMF 500 myd TDS, Prednesolone 60 Mg along with Mult Vit. Platelet went upto 48000 and after discharge with in 5 days dropped to 26000. Inj Romiplostin started on weekly basis while tappered down steroids. Even after 4 injection on 4 weeks basis did not work for her. Finally doctor started with Rituximab injection on 12 Apr, 2nd dose on 19 Apr, 3rd dose on 26 Apr and last dose on 03 May. So far there is no sign of improving platelets. However our Haemotologist called tomorrow 29 Apr 21 with CBC result for review and I will update as what furtehr management he is suggesting. I am told by Dr that Rituximab effects can be only after 4 weeks which we are awiating. Meanwhile he advised that any time I can take her to ER and get her admitted for immediate treatment.
Thanks and regrads
Cdr BS Rainu (Retd.)
bsrainu I am so sorry to hear your wife is having such trouble. I hope the Rituximab will bring her count up to stay - it does take a while for it to work if it is going to. My friend had it back when they gave 8 infusions and it helped her a lot.
I don't know anything about the other medications she is taking as the only treatments I have had so far was prednisone when diagnosed in 1989 (took for almost 4 years) and then WinRho in 2002. However I noticed you mentioned she is taking a Multi-Vitamin - that would probably have Vitamin E in it. I was told not to take a Multi-Vitamin because of that Vitamin E - I take vitamins D3, C, Calcium and others separately to avoid the E. I was having spontaneous bruising on my fingers when the doctor told me to stop the Multi-Vitamins, once I did the spontaneous bruising on my fingers stopped.
I hope you and your wife get some good news for her CBC results!
(Our younger son was fortunate to visit your country on a school trip when we lived in Hong Kong - he very much enjoyed the experience)
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.
Platelet Disorder Support Association 8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141 Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003 E-mail: firstname.lastname@example.org