It's taken 4 years nearly, but my amazing rheumatologists have figured out that my version of (currently) seroneg SLE + Sjögren's features leukopenia + hypogammaglobulinaemia & our head of clinc has just referred me to immunology. I think it was recent persistent kidney infections + comprehensive metabolic bone unit blood tests prior to starting IV osteoporosis treatment that resulted in these insights (my long term chronically low leucocytes, neutrophils & immunoglobulin & IgG, IgA, IgM have gone even lower following 3 1/2 yrs on daily hydroxy 400mg + 1 year on daily myco cellcept 1000mg with 10mg 4 wk pred tapers to damp neuro cerebral symptoms as needed). Fortunately we do have baseline bloods from before I started lupus meds, which prove I've had these low bloods results for some time.
anyone familiar with my version of lupus thanks to this wonderful forum, will know it was infant onset, but the early diagnoses were lost after I left home @21 & moved to the UK. So, for most of my adult life (I'm now 61) i spent a lot of time at the gp's & various hospital clinics having emergencies damped down/operated on or whatever, plus secondaries diagnosed & treated (including recurring persistent infections) without the nhs spotting the underlying lupus..until nearly 4 years ago...of course, alongside all that there was non-lupus stuff going e.g. Spondylosis due to Ehlers Danlos Hypermobility & a bad fall on my head in childood. Anyway my lupus treatment plan has made a MASSIVE positive difference...2014 was the best, most pain & symptom free year since the 1970s
But now my consultants are concerned that my chronic tendency to low WBC, gamma globulins, complements & haematocrit may have been made even worse by either/or both: hydroxy & myco. Our head of clinic instructed me to have more bloods done + a Bence jones urine analysis & to come off Hydroxy last weekend. I'm now waiting for the immunology appt....getting my head around all this: am delighted my version of lupus, sjogrens etc is becoming even better understood....but dread having to come off my beloved myco too...and have to try another immunosuppressant eg rituximab apparently is an alternative in cases like mine....or whatever
And I sure would welcome contact with anyone here who is going through or has gone through this immunoglobulins+WBC+ anemia with recurring persistent infections thing....
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Yes I've had it for many years & started weekly immunoglobulin infusion 9 years ago . As soon as I started the infections subsided . I still have a few from time to time . I was also forever struggling with shingles before the treatment but glad to say that's all finished now. I do the infusions at home now which is great. It's all so easy just a little time consuming every week but hey it keeps life threatening infections at bay. I hope you get your appointment soon & they sort it out for you.
Am so glad to hear from you + am so glad treatment is going well for you long term! A close friend my age with CIDP has had his first IV IgG treatment & come out in terrible persistent rashes which aren't responding to steroids....and that's just IgG. (He is a DES baby, like me...we share many chronic neuropathic symptoms but his diagnosis process has only just begun...my feeling is that his primary is probably Sle or sjogrens...but time will tell...)
If you're willing, here are a few ?s:
Which immunoglobulins are low for you?
Do you know which immunoglobulins are in your iv treatments? I understand IgG & IgA mustn't be given together...
Which clinic is actually treating your immunoglobulin deficiency & monitoring this aspect of your lupus: immunology?
What lupus meds are you on: is your lupus treatment plan & monitoring done by rheumatology?
xo
Hey barnclown
I'm sorry to hear that things haven't improved much since you have posted your previous thread.
May I ask what type of "neuro-related" issues do you have (and was this the reason why you were put on Cellcept)? I have a Neuro issue as well so I was sort of curious. If your medical problem isn't a life- or organ-threatening condition then your consultant might need to reconsider your treatment. I know quality of life which these meds have been able to give you is important to you. However, if your baseline immune system is so low and you are on immunosuppressant to make it even much lower..you may not even able to fight off common infection then your life could end up being at stake..Have you discussed re. the risks for malignancies for example? I'm in a similar situation in a way... My immune system isn't generally great and am planning to start Cellcept myself. (I have an organ threatening Lupus)I would be very curious as to what immunologist would be able to offer you as a solution. Please keep us posted. Kind Rgds,
Yes, in some ways things haven't improved, but in other ways my feeling is things are much better because I'm being watched so closely by rheumatology and taken seriously enough to get this referral to immunology (which I suspect is where many of us need to be in the first place, if not asap). I'm told by other lupus patients with much more experience of the nhs system that such referrals are very rare, & that I'm very lucky. So, I'm looking at this phase of my 'diagnostic & treatment plan process' as a positive breakthrough.
My rheumatologists refer to a certain cluster of my long term chronic symptoms as neuro cerebral. These symptoms first began to flare extensively in the early 1980s when I was extensively investigated by ENT. by the early 1990s I was being investigated further by neurology (for MS) and by neurosurgery (the nhs booked me for a double cervical spine discectomy). Over the decades, I learned to minimise & compensate for my NC symptoms via intensive lifestyle management, which involved everything from constantly using a cane & wearing a cervical collar, to giving up a social life & getting my employer to let me work mostly from home. Basically, these NC symptoms took over my life, and, aside from recurring persistent infections, were one of the clearest signs of what rheumatology says is my version of lupus & sjogrens & Ig deficiency. Apparently the dramatic way many of my NC symptoms respond to oral steroids & myco has encouraged my drs to see them as they do.
My understanding is that I am a relatively unusual ‘lupus case’ mainly because of my infant onset lupus diagnosis being kept from me, which means there is a huge gap in my lupus history – I'm told that most young children who are diagnosed with lupus, even if they stabilise and are off all medication, are followed up with yearly checks – just to see what, if anything, is happening. I went without rheumatology-led lupus monitoring from 1978 till 2011....while my symptoms were freely causing progressive debilitation uncurbed by systemic treatment. My impression is that my NC symptoms are now chronic and that the latest breakthrough in more fully understanding them is in recognising the part both sjogrens & immunoglobulin deficiency are playing...which is where immunology comes in
I've posted at length on here describing my complex of NC symptoms, so I'm tempted to not post further right now, but I will pm you asap....and am wishing you all the very best of luck getting through your process...yes, because I've already had one malignant tumour dealt with (in 1998), I'm alert to the issue of malignancy. Am doing my best to keep calm & carry on. But it is tough. And I doubt I could manage without all of you on this wonderful forum.: you all help & inspire me more than I can find words to express
Morning BC
Good luck @immunology. I also see myself coming off Cellcept in a long run - a feeble immune system and immunosuppressant simply won't mix too well.. Hope Rituximab would be suitable and you'll continue to do well. They do say, there's no one Lupus, we all have our own "different" Lupus. Some of us who wouldn't mount a "normal" immune response, it's much harder to get it diagnosed. I saw an immunologist a few years ago myself. I agree you will benefit from seeing one by the sound of it. I look forward to reading your CNS issues. Wishing you well and take care xxx
You put it all so well. Our versions of all this are individual. teatment & management are a balancing act. I'm a libra so balancing acts are very me! am v grateful for your comments. Hope you'll let me/us know how you get on. Wishing you all the v best. xo
One of the major issues with Lupus is the white blood count. If mine goes above 2.2, I'm happy. I've had urinary tract infections, eye infections, and if I get a deep cut, it sometimes leads to cellulitis even though I bandage it frequently and use antibiotic ointment. Our bodies cannot fight because we lack a working immune system. All our doctors can do for us is monitor. I have ITP, anemia, and lots of abnormal labs. It goes with the territory!
Yes, thanks, for your reply: that's how I understand this too. basically, it seems my particular version of this leucocyte/neutrophil infection thing is now coming under closer scrutiny...triggered by the possible serious implications of this drop in my already low Ig levels. The test results re proteins in the blood aren't back yet. And we've yet to find out if my Igs recover at all once hydroxy is out of my system. So, I'm not jumping to any conclusions, but, in the best of all possible worlds, I'm hoping that immunology input helps my consultants to individualise my treatment plan so that my chronic symptoms continue to be somewhat damped down while my predisposition to infections is somewhat decreased. But I do realise this is far from straight forward: it's asking a lot....really
If you have Lupus - it attacks your immune system and that's why you are always prone to infection. I have never had a "normal" lab with many of my tests. Everything that happens to me that I speak to my doctors about, I get the same old same old - "You have connective tissue disease," aka SLE! One must be extra cautious in their every day life and avoid dirt, dust, people with colds or flu, and clean things with antibacterial cleaners or alcohol. I even clean a lot of my eye make up with alcohol, after having both eyes infected. Eye drops for infection are very expensive. Wash your hands often and just be aware that you have a condition that predisposes you to everything and anything. We are the unlucky ones. Most people haven't a clue as to how we must live our lives.
Yes: you're so right! This has been the story of my life: doing everything possible to avoid infection, & on & on! You're tougher than me: I gave up makeup years ago...
I try and live my life as "normally" as I can. I still go to the beauty parlor every 4-5 weeks, and I use eye makeup only. When I do fashion shows (I used to be a showroom model, and now we do shows on cruise ships), that's the only time I use actual face makeup to cover the Scleroderma scar on my cheekbone. You need to take pride in the way you look and "pretend" everything is the way it was before you got sick. People do treat and look at your differently. Even in my tennis games - when I used to play with the top players - now I get scheduled with the "undesirables." The players the better ones don't want to play with. I still go out there and do my best and accept that some people are just plain mean and stupid! One day, they might be ME! Unfortunately, that's the only way people would understand what it feels like! And that includes family members.
Great to know you too! Being diagnosed with SLE is a life changing experience. However, my motto is "Don't change yourself -- change your friends!" Good luck and be well!
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