Pooh bear (the wife) has Sle, pots + loads of other stuff and now anemia.
Iron, folate and B12 all normal as is erythropoietin.
unusual bloods :
Haemoglobin 99 (dropping at 1.5 per week) ; steadily dropping over 2 years
MCV 86
mean corp 25.2
Reticulocyte 2.1 %
transferrin sat index 9%
serum LDH 667
PB's on MMF 2000mg, pred 10mg (reduced from 30mg) and hydroxy 1000mg /day
Our rheumy is wondering what to do
Any experiences of this and suggestions please
Hi Jimbo. With a Hgb of 9.9, her reticulocyte is mighty low. Reticulocytes are immature red blood cells that help determine if her bone marrow is producing adequately in response to anemia. Best guess is the MMF is suppressing her bone marrow. It’s quite a hefty dose. MMF in addition to Plaquenil and systemic autoimmune disorder will only make this worse. Of course, any source of slow bleeding (esp GI) should be ruled out but with a transferrin saturation that low, I’d guess more bone marrow suppression. Her high LDH is indicative of cell turnover or low oxygen levels. Again this points to bone marrow turnover - cells dying and churning back out. Her marrow is trying but the meds are making it harder to produce.
As a disclaimer, I offer this information as a knowledgeable patient and not a physician. The results should always be reviewed with your doctor. But I do hope this information helps comfort you a little bit. Sending many hugs to your Pooh bear. ❤️
Thank you so much Jmiller623.
Our Rheumy (not a lupus expert) initially took her off prednisolone (30mg) and she was on her knees. and then wacked her onto MMF at a high dose. Her c3 is normal for the first time ever but she is on her knees again.
We see Guys london next week and will raise your thoughts with them and thank you for sharing your experiences.
Just to add her EPO has just come back high at 68 - so it looks like the hormones are trying to produce more blood cells but cant.
That’s good. I was going to ask if Epo was elevated or stone cold normal. Yeah, sounds like her body is trying to make more but her blood factory is operating under poor working conditions (sorry for the analogy).
The LDH being high is also resultant of hemolytic anemia. As red blood cells die, they release a lot of LDH.
I honestly think a good medication reconciliation would be a good start. The plaquenil dose seems a little high and would be my first target. Talk to your rheumatologist and see if she could maybe go down on the Plaquenil and may a wee bit up on steroids. Steroids usually boosts your Hgb since it tells your white blood cells to chill out and the lineage gets shifted to its sister cell - the red blood cell (this was tangible to my genetics research). It wouldn’t surprise me if her most precipitous drop in Hgb came after the steroids were reduced.
Please keep us up to date with how your next appt goes. It may be worth seeing a hematologist for a consult if you don’t already have one.
Thank you so so much JMiller623.
This now all makes sense - her bloods only started to get bad after starting hydroxy and her bloods got worse still when she reduced pred.
Pooh bear would get all excited but that would take haemaglobin she hasnt got. Thank you so much and will keep you updated.
Hi!.. Sorry to hear that she's not well at the moment, but it's good news to know that she will be seen by specialists at Guys london. I continuously suffer from haemolytic anaemia due to my lupus. Every person is different, but this is how it's been for me. What tells me that it's currently active is: low haemoglobin, increased reticulocytes and LDH. And gets works by the minute. No matter how much iron and vitamins I take; the flare has to be stopped. And that's why immunosuppressants are needed. How long has she been on MMF? It takes about 2-3 months to work. Whilst then, doctors keep me on high doses of steroids so haemolysis is on hold. Getting some improvement during this time is very positive and it's just waiting for the MMF to start working 
Hydroxy is mainly for joint pain, and protects your body from lupus somehow, but it doesn't stop a haemolytic anaemia.
Important: very much extra support is needed! It feels awful to have low haemoglobin, plus lupus fatigue.. 
Hi Dalilatm
I am so sorry you have already experienced this as well - lupus fatigue and anemia fatigue is not nice.
Have you tried ritixumab - we have been told that this is particularly good for blood lupus ?
Is there anything that helps ?
thanks for making contact
You’re welcome!
I’ve been offered Rituximab, but so far the traditional treatment ‘steroids+azath or MMF’ has worked well so I’ve declined the offer. To be honest, I haven’t wanted to take new risks with a new drug (that I haven’t had before) when the ones I know already work. Plus, I want to keep it as an additional resource in case I have a much worse flare. I’m not saying no to it, but just when it’s really needed. That’s my own personal view.
What helps? Good quality rest, healthy diet and no or little stress.
Good luck!
Just to update following a meeting with Prof V at Guys.
First line of attack is to get an iron infusion in the expectation that some of this will be absorbed into the red blood cells.
The second line is to look at changes to lupus meds /other meds. In the course of this discussion and after at looking at all of the historical bloods he pronounced your weird referring to Pooh bear. Your c3 and c4 should go up and down together - they dont. Pooh's c3 is low and her c4 is high. Then he introduced the alternative complement pathway as an explanation for what was happening. He promptly labelled me a geek and gave me a research project to look at this.
Many thanks to the Prof who along with all the staff at LC Guys are first rate.
So anybody for alternative complement pathway and how it impacts the patient and treatment ?
Autoimmune Disease / Lupus / Fibromyalgia???
Does Lupus cause eye problems?
Painful wrist/hand flare - Lupus SLE
Blood test positive lupus
