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Low WBC and MCTD
I have been following this group for some time just to listen and try to get some insight and some answers from others with autoimmune disorders.
I am 62, until recently I was going to the gym doing weight training with my husband 4-5 times a week. In September, I caddied for my 40 yr old son in a golf tournament in NY. However, in the last 6 months, it has become increasing harder to sit, stand, go to the gym, do yoga and most importantly sleep. I am on Ambien to put me to sleep but once I wake up, I have to move to the couch due to my shoulder pain while lying down. I might get 2-3 hrs of good sleep a night.
In 2018, I had to have a CBC done for a position in management that I had accepted. I had not had a CBC in years and rarely sick and only went to my gyn once a year to hormone therapy. When the CBC results were in my WBC was 2.6 with some other out of wack reading, so my primary sent me to a hematologist, who ordered a bone marrow biopsy which only showed that I had enlarged red blood cells and nothing else. Dr. wanted to just monitor my blood work to see if anything were to change. I was told to just to go to the emergency room if I started running a fever.
I then moved and was referred to all new doctors. New hematologist referred me to a rheumatologist. who ran tests with no real answers but did say that the muscle aches that I had were arthritis related (getting older related) and "maybe" Lupus. I asked if the treatment for Lupus would help my low WBC and he said "No".
I did not want to go on Lupus medication without a real diagnosis, so I just went back to the hematologist who just charged $100 a pop every 3 mos to draw my blood.
I stopped going to hematologist and rheumatologist and my primary was monitoring my blood work. My CBC is now:
WBC - 1.3
RBC - 2.7
Low Hemoglobin
Low Hematocrit
High - MCV
High - Bilirubin
High - MCH
Low - ABS Neutro
Low - ABS Lymph
Low - Abe Monocytes
Tested Positive HLA B27 in Oct (moderate to severe RA & Psoriatic Arthritis.
New rheumatologist recently tested me for Lupus which did test positive with many x-rays of neck, shoulders, hands, wrists & fingers. All showed Arthritis. All symptoms for Lupus other than the Psoriasis.
Rheumatologist put me on Plaguenil and trying to get approval for Tremfya injections while sending me back to hematologist to now treat my WBC, which will only go lower with this medication now. I don't even know how low WBC can be treated.
It's hard to get sympathy from people when as my husband puts it "you are the healthiest sick person I know". To look at me is deceiving. Only physically looking arthritis are two of my fingers. Everything else is internal and painful!!!!
Just looking for answers on how to treat low WBC? Sorry for such a long explanation!
Painful in Florida, ugh!
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Thank you!!
What a rubic cube of a diagnosis.
You know my son who had reactive arthritis following knee surgery has had a persistent issue with multiple levels of cervical and thoracic spine. He has two artificial discs and multiple levels of fusion. He had one really scary episode of infection he was hospitalized for after a fusion - the infection was sitting on the artificial disc - which of course has no circulatory system, and therefore won’t respond to it antibiotics. They had to go back in to essentially wash down the device with antibiotics
I’m now wondering if all of that may not be related to the reactive arthritis of years earlier.
I will send a private message. No idea if she monitors on weekend but she will see it soon I’m sure.
I can travel to Jacksonville pretty much anytime. Don’t want to miss up anyone’s holidays. Bad timing for time of year.
"I’m now wondering if all of that may not be related to the reactive arthritis of years earlier."
Probably.
The thing I found most intriguing about autoimmune disease is "immune memory."
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/
My rhematologist believes this is a factor in my case. He simply says my immune system isn't likely to "forget" what it has been attacking for so many years. What a dreadful thing to say.
I prefer to think my immune system just needs to be reset and needs to start over. It is just deranged but hopefully it will eventually figure out what it is supposed to do. I'm still optimistic.
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3 ReactionsSooo Confusing 🫤
Hi @callieb1102, it looks like your hematologist already considered that getting a second opinion at Mayo Clinic might be a good idea. If you would like to try again, you can ask your hematologist or rheumatologist to make a physician referral or you can make a self-referral. All the information about how to submit a request can be found on this webpage http://mayocl.in/1mtmR63
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1 ReactionThanks so much!! Based on what Callie shared it seemed to me that perhaps her hematologist was inquiring about who was researching this. Maybe a straightforward referral for a second opinion will provide new insight into treatment options.
Thanks again for responding on Saturday.
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1 ReactionThank You!!