At last my HB level has risen to 10.5, after having a 3 unit blood transfusion. But my platlets are still low!
I have been referred to the Haemotology Clinic for treatment, but I'm unsure what this will involve. Has anybody been through this & if is so can u enlighten me as to what I should expect.
Yes. More tests likely. Haematologist = jabs and more jabs and tests and more tests.
What have you been diagnosed with? iron deficiency anemia? pernicious anemia?
I'm curious as to why IV iron / saline treatment wasn't used as it is highly effective efficient expedient and safe. Transfusions for patients with SLE are quite risky.
Send me a message if you like. I've 20 years plus experience with such issues.
If I can be of help to you I'm happy to navigate you through it.
Hi Nouska
I was diagnosed with SLE about 4/5yrs ago, totally unexpected & up till now apart from the daily headaches & occasional joint paint I'm been in good health.
About 5months ago my bloods started to get effected, low platlets, white cells, neutropils etc. It got to the point where my HB level dropped to 6, that's when I was admitted & had a blood transfusion.
I've now been given an appointment for Haemotology!!! My Consultant says that I should have a bone marrow test done, as there may b an underlying problem as she said Lupus shouldn't effect the blood!!!!
Oh so confusing!!!!!!!
All your advice is much appreciated x
No confusion. Logical order of progression. Take comfort that your doctor/s are checking off the boxes one by one protecting you caring for you.
In cases such as yours it is sometimes necessary to examine the source of the blood cells in the bone marrow (through a bone marrow aspiration / biopsy) to obtain more information on hematopoiesis.
Focus on the words "there MAY BE an underlying problem" which is far different than "there IS an underlying problem".
I know patience is difficult but patience is what is required at this time. You have the appointment you're set.
Your job is to take care of yourself, get to that appointment, let the Haematologist do what they require to diagnosis you, ask questions to clarify any concerns, and then accept / receive the proper treatment for what ever it is that is causing your symptoms.
The specific cause of the Thrombocytopenia (low platelet count) with corresponding anemia must be found in order to treat it properly.
The choice of test is up to the Haematologist. Perhaps you will not require a bone marrow aspiration / biopsy (it's really not that bad).
TIP : Drink lots of water prior to your appointment so that you are well hydrated. It makes for more pleasant testing. Easier jabs. Et al.
You can do it.
Support is here when you need it. Take care.
Thank you so much, advice gratefully received xxx
alyj lupus can affect the blood though is rare and cause something called haemolytic anemia a friend has this its diagnosed by a simple blood tests. though suspect heamatologist will want bone marrow too. my friend is treated with rutixamab and now has no problem from it. and is now much better.
good luck. tatty.
Thanks Tatty xxx
Fatigue has reached a whole other level, after 10.5 years. Scared it’s narcolepsy….
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