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Posted 11/12/2018 3:28 AM (GMT 0)
Hello All,

Have any of you dealt with a blood disorder or cancer as a result of lupus or medication you have been on to treat your lupus? I have tried to remain calm and not worry about the call I received after I left my doctors appointment on 10/31. I have a 3 hour drive each way, to and from my rheumatologist, on the way home my doctor’s nurse called and advised my doctor was concerned about the labs they had drawn and wanted me to repeat them in my hometown the next week and have them faxed to him as well as to get into a hematologist/oncologist asap. She stated she was sending me lab orders and a referral out that day.

Below are the labs that are causing great concern. I did have the labs redone last week, but I have not gotten those results yet. My appointment with the hematologist/oncologist is 11/19/18. No matter how hard I try not to think about this I can’t help but to for reasons why these labs have dropped so low. I was just in the ER 10 days prior to this lab draw and my WBC were 4 times, my other counts were normal. I have my labs drawn every 3 months and the items below are always normal.

Name Value Reference Range
WBC 1.9 Verified (LL) 4.5-11.0 (mm3)
RBC 3.4 (L) 3.8-5.10 (mm3)
HGB 11.3 (L) 11.5-15.0 (g/dL)
HCT 33.3 (L) 34.0-46.0 (%)
PLT 83 Verified (LL) 150-500 (X10 3)

I am not scared of the answer, I have been through so much, as we all have. It’s the not knowing so I can get to treating it and move on that has my stomach in knots. I have and will continue to believe each day I have is a blessing.
Posted 11/12/2018 4:26 PM (GMT 0)
Oh, dear! Sorry to hear that your blood counts have dropped. How are you feeling?

I know sometimes I've seen low blood counts in people who are taking the kinds of meds I remember you to be on (my memory is murky, though). I don't know if they ever got the counts back up or not.

Would it help any to make sure you are eating blood friendly foods like red meat and Vitamin K (dark leafy greens) while you wait for the hematology appointment?

Let us know how it goes, sorry to be of such little help.
Posted 11/12/2018 4:53 PM (GMT 0)
Thank you Lynnwood. Yes, I am on massive immunosuppressants. Weekly Benlysta sub-q injections, IVIG every 28 days and I was on cellcept twice daily until these results. I am hoping that adjusting my medication is all it takes and it’s simply a matter of my immune system being too suppressed. I have definitely been upping my protein and leafy greens. I’ll keep y’all posted.

Thanks,

Melissa
Posted 11/15/2018 4:58 PM (GMT 0)
Melissa,

I also have low platelets, sometimes as low as 5. When they plummet I am put on steroids and given an infusion or two of IVIG to get lupus under control. Unfortunately, the treatment only last about a year or so. My "normal" is usually between 50-100 and since I do not seem to have any bleeding or bruising problems at those levels my hematologist is not that concerned. When I developed A-fib 2 years ago I could not go on blood thinners and had an alternate treatment where a mesh is placed in my heart. Scar tissue grows in it to seal off the Left atrial appendage where blood clots form which means I do not need to take blood thinners. I have been dealing with low platelets since 1990 and was otherwise very healthy until lupus became active. Actually, I believe lupus was active against my platelets for at least 15 years before I became symptomatic. Now it is just part of my new normal. Bill
Posted 11/16/2018 6:09 PM (GMT 0)
Thank you for the information Bill. I am already on IVIG infusions, have been for some time now. I’m not as concerned about the platelet count as I am that the RBC, WBC, HGB and HCT also dropped so massively at the time as well. That said, I just got news that my counts were back up with my recent lab draw, so presumably stopping the cellcept has helped bring my counts back up for the time being. I have to say I am more exhausted this week than I was last though. I can’t imagine that cellcept would be out of my system after 2 weeks, but perhaps it is. I will redo labs again next week to check my counts again. Fingers crossed my counts are still up.
Posted 11/16/2018 7:41 PM (GMT 0)
Your lower counts are probably being caused by the same cause ….lupus. IVIG does a good job of controlling lupus but needs to be coded as something else at least for medicare to approve its' ridiculous cost. By getting lupus under control hopefully your numbers will improve. Having numbers off is not always such a big deal so don't obsess over them. I have lived with this for many years now and it is just part of my new normal. Or to view it in a humorous vein, I am a weirdo.
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