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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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Wow
Never have I ever. May I ask where you live? I would want to get myself to a premier teaching hospital.
I have RA for the past 12 years and know a fair amount about typical blood values they are interested in and try to manage.
The entire point of the biologics we take is to dial down the immune response so in the absence of legitimate targets like infection, it doesn’t turn on illegitimate targets like my joints. It seems to my semi-educated perspective, you have the antithesis of that scenario. Your immune system isn’t going to attack your joints - doesn’t it appear Comotose based on lab work? And yet X-Rays suggest active disease in your hands.
I’m very confused. But I’m not the one who needs to understand. Do you feel like you have your head around it?
Maybe someone here has encountered this scenario but my instincts say this is a rare enough scenario you might want to be managed somewhere they are more likely to encounter it in the wild instead of in a write-up someone else did.
Sending good JuJu your way!
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1 ReactionWow from me, too.
I would repeat everything that pb50pam wrote. (Good job, Pam.)
It IS hard to have an "invisible" disease.
And more good JuJu your way from me, too.
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1 ReactionAnemia of inflammation was my first thought.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6536698/#:~:text=Anemia%20of%20inflammation%20(AI)%2C,%2C%20autoimmune%20diseases%2C%20and%20cancer.
My labs were messed up more than once but not as much as yours are. I was also HLA-B27 positive. Having recurrent uveitis which is also associated with being HLA-B27+ made the diagnosis easier. Unfortunately, a diagnosis didn't make it any less painful. Massive amounts of prednisone helped but now I'm on a biologic.
https://emedicine.medscape.com/article/1201027-overview#:~:text=HLA%2DB27%20is%20associated%20with,cases%20are%20HLA%2DB27%20positive.
My diagnosis was reactive arthritis. The most notable autoimmune disorders that are associated with being HLA-B27+ include: ankylosing spondylitis, reactive arthritis, Behçet's disease, inflammatory bowel disease, and psoriatic arthritis.
I was diagnosed 30 years ago. I don't have disfiguring arthritis but there is extra bone and arthritis on imaging everywhere they look.
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2 Reactions@callieb1102
Apologies - not our intention to talk around you on this while we geek out on clues as to what your Rheumatologist is seeing. And while feeling more settled as to what the immune response may be in terms of reactive arthritis, I don’t understand the low WBC or how it might be treated.
I’m sure this is not particularly interesting to you - you just want to feel better. I’m confident the Rheumy can address the arthritic pain. But to your point, it is likely to further suppress the WBC count.
Again - let me know how we might better support you.
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2 ReactionsI should have considered this. My son had reactive arthritis following knee surgery at 25. We had to take him to a medical school to get the diagnosis and a round of prednisone did the trick. I’m sure the precipitating event isn’t always that obvious.
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1 ReactionYes, the infection is usually resolved by the time the patient develops arthritis. I was told reactive arthritis could be a one time event, or flares could start to recur or it could become chronic.
My first event was over and done after a few doses of prednisone. My flares started to recur a few years later and I was "conditioned" to take prednisone but never for a long time. When the pain became chronic ... I didn't have any prednisone to take.
Several times my arthritic flares were treated with antibiotics just to see if there was a hidden infection that was missed.
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1 ReactionThank you for your support and input.
I live in St Petersburg, FL. Do I have my head wrapped around it “Absolutely Not”
I was told it’s MCTD, because I symptoms of different diseases, so it could be more than Lupus and RA & Psoriatic. I did have a second bone marrow biopsy in June of 2022, after I got really sick and ended up in hospital with only severe headache and fever (scared to death) treated for a UTI that had gone septic (no symptoms whatsoever of a UTI) turned into a kidney infection and e.coli.
My Hematologist reached to the Mayo Clinic in Jacksonville in 2021 but they were not excepting new patients for this type of research for my issues.
I still work full time and sleep and right shoulder have become my enemy.
Any input is welcome!
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1 ReactionThe conditions mentioned in the posts above all fall under the umbrella of seronegative spondyloarthropathies. By definition, these diseases do not have circulating rheumatoid factor, hence the term seronegative. Psoriatic arthritis and reactive arthritis are just two of the conditions. There are several more.
These conditions have "overlapping symptoms" which makes them difficult to differentiate. The thing with the various types of spondyloarthritis is that you can have the characteristics of all of them. The diagnostic label is given according to what symptom predominates.
https://spondylitis.org/spondylitis-plus/an-updated-overview-of-spondyloarthritis-a-family-of-related-diseases/
The following link also has some good information.
If you scroll down you will see a picture diagram that is colorful.
https://boneandspine.com/seronegative-spondyloarthropathies/
The picture is referred to as the "famous venn diagram of spondyloarthritis." The names of the disorders are misleading because it is hard to see how connected they are by looking at the names only.
I'm surprised your doctor tested for HLA-B27. They seem to be on the right track. Unfortunately, being HLA-B27 positive doesn't confirm anything.
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4 ReactionsWell Drats. Jacksonville isn’t exactly around the corner but I’d love to see if Mayo would consider an evaluation/review and then coordinate with your hometown Rheumy for treatment oversight.
I’m going to loop in one of our ace moderators. She is aware of all the possible ways to connect to Mayo - beyond research. You need premier level treatment input/consultation
In the meantime, I will give you the same lecture I gave my friends during the worst days of Covid. It’s
inadequate to not intend to expose yourself to infection. You have to deliberately intend to NOT expose yourself to infection. Remember everything you learned about how to protect yourself! I wear masks everywhere I go inside. Everywhere. I carry Purel. I wash my hands incessantly. I don’t allow minor scratches to be ignored. I take
No chances with leftovers. You know the drill. It’s a pain but…
@colleenyoung
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1 ReactionThank you so much. I actually have a son/family that live in Jacksonville. I’ll be up there again 12/26 for a couple days. I’m always making that trip. I would at least have a place to stay.
Unfortunately, as I sit here writing this, my husband is at urgent care after not feeling good for 2 days now, ugh!
Any help, advice is greatly appreciated…
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2 Reactions