I have been diagnosed with Cerebral Lupus in November 2014 and have been taking Mycophenolate Mofitil (Cellcept) since then to prevent further brain lesions. Originally I was on a dose of 1g bd, which increased to 3g bd in September following a week in hospital. Since then I've been catching every cold/flu going and my recent blood tests showed my neutrophil count to be 0.7 and my white blood cell count and serum creatinine were just under the low end of the nornal range too.
My neurologist has said that these numbers are what he would expect and I am to continue taking the same dose of mycophenolate. I have another blood test in a couple of weeks to check the neutrophil count again. This is the first time that my body has started to show inward signs of the adverse effects of mycophenolate. Since now my bloods have been within normal ranges.
Has this happened to anyone before? What will happen if the count falls below 0.5 and I'm considered severely neutropenic? I have to travel by tube everyday to get to work and I can't risk getting sick but I also can't risk losing my job by not going to work!
Would they consider treatment to bring the neutrophil count back up? In my mind it's ridiculously irresponsible of them to leave me with my count so low for such a long period of time.
I read that life expectancy with febrile severe neutropenia (<0.5) is 2 weeks. I CERTAINLY do not want to risk this happening so I'm constantly washing my hands, maintaining excellent oral hygiene and staying away from anything sharp! But there is only so much I can control.
I'm genuinely worried, especially now I've come down with what feels like a mega cold and my sinuses are aching. 😞😞😞
Thanks in advance.
Jen xx
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JenStarkey
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Hi Jen. I have a bit of experience of this sort of thing, and, to an extent, share your concerns. For what it's worth:
I have chronic neuro cerebral symptoms which have been responding vvvv well to daily myco + pred (both at relatively low doses) for some time now as part of my combined therapy daily lupus meds. And in Feb 2015 my lupus clinc's head rheumatologist urgently referred me to immunology due to lymphopenia + hypogammaglobulinaemia, which she thought might be due to my immunosuppression meds. I was v anxious I might be required to come off immunosuppression, but this is not the case. My clinic head had me pause daily hydroxy for the first 5 months of immunology's investigations, but once a review of previous years' blood results + regular monthly immunology blood tests established that I had a history of low lymphocytes & Ig G, A & M...then I was allowed back on hydroxy (thank goodness..I really missed it & am glad to have found out how much I actually need it)...anyway my blood results haven't seemed to worsen over the months that have followed. Immunology is leading me to understand that there are treatments for patients with WBC & Ig deficiencies which can be run alongside immunosuppression with mycophenolate et al.
I haven't been investigated by neurology recently re my chronic neuro cerebral symptoms because these were investigated by neurology back in the '90s way before my infant onset lupus diagnosis was recovered 5 years ago when I was in my 50s. Rheumatology thinks that because hydroxy + myco + pred are damping down my NC stuff quite well, there is no need to see neurology for the time being. Meanwhile immunology are continuing to work on refining details of my profile. So I do feel I'm a 'work in progress'
I hope something in there can be useful to you. E.g. I'd think an urgent referral to immunology might be good for you...especially as your sinusitis is flaring and you're out there in the working world (am lucky: had to retire early due to health & am now a home body @ 62)
Am looking forward to following this thread: thanks for posting
I assume you would know the answer to this: Does lupus come under disability legislation? That would help Jen a bit with the fear of losing her job because of being off sick.
WOW, GOOD POINT! no i don't know about this...had to retire before the nhs figured out there was something other than my spine conditions underlying my health probs...but i did get a lot of counseling form the citizens advice bureau and somehow managed to hang in there until i was offered voluntary redundancy and the formal only thing my employer did was have occupational safety interview me...which resulted in a vvv good office chair
Hi PMRpro, I can confirm that when I had to take early retirement from my job in the NHS last year SLE was indeed covered by the disability legislation, according to my occupational health department.
Hi vijij. I was diagnosed with lupus as an infant in the USA. USA Drs treated my flares only, so I was not raised with constant daily lupus meds. My mother never told me I had lupus. I thought I just got sick a lot & was very reactive.
I moved to the UK at 21, so the NHS took over my healthcare unaware of my primary condition being lupus. I spent my adult life attending many different NHS clinics at which secondary conditions were diagnosed, treated & monitored.
It wasn't until 2010-11 that the cumulative multisystem effects of inflammatory process finally became so obvious that the NHS investigated me for a systemic autoimmune condition. Based on thorough clinical examination + medical history alone my very experienced rheumatologist began daily hydroxychloroquine as initial treatment with a 'provisional' diagnosis of SLE. At that point my mother revealed the earlier lupus diagnosis & treatment. So, I've been on hydroxychloroquine for 5 years now.
Could be a "flare" because you are stressing and anxious - your immune system knows how you are feeling. Maybe, it's about time to try a beefier drug than MMF? I know being stressy as I can be lol I have known people flaring on 3g MMF.
Re work: I've been made redundant twice in the last 14 months veiled with the usual 'restructure' bullocks when I knew implicitly that it was directly due to my illness and sickness record, but was unable to contest due to being employed for less than 2 years in each instance.
My current employer is empathetic but is going through a potential restructure and again having only been there for 6 months I'm understandly reticent to believe that they will put my human concerns over their need to be a profit making organisation.
I make a good wage, over £40k per annum, I would have to take a big cut if I became disabled. Plus with the austere new PIP laws I can't even guarantee I would be eligible. They would most likely tell me to 'change my career prospects' and I'd end up mentally unchallenged and feeling like a failure. Oh the joys of disability 😢
My overall health concern is that I don't have anyone in the health profession taking my illness, and indeed neutropenia, serious.
I don't know when to see doctor or make the decision to go to a&e without seeming like a hypochondriac. Especially given my neuro telling me to just basically crack on!
I'm so over this flipping (trust me, I'd like to use stronger vernacular here!) over this illness. I'm half the person I used to be, I honestly can't see a way out and I can't bare the thought of trying to be 'satisfied' with the life that I will have (potentially no children, possibly flaring after having children and not being able to tend to them properly, being half a wife and mother, causing undue strain on my family and relationship). I've already lost friends because of this illness. I'm trying SO hard to be positive and see the bigger picture but, quite frankly, I'm at the end of that VERY long and drawn out stick. So please don't tell me to just be grateful for what I have, or that it will get better, etc - I've been chanting that mantra over and over again for the last 2.5 years and I'm still waiting for my lesions to shrink, for the endless fatigue to ease, to be able to exercise without ending up flat on my back for 5 days, to be able to go on a weekend mini break without a weeks reside in hospital hooked up to a steroid IV.. You get the drift. I'm at the end of the position end of the battery.
I don't think I'm flaring - I don't quite feel the same as I do when I am. I'm able to get up and urinate, make some food and have a bath. Albeit, with hourly rests after each basic activity. How I'm feeling now is a direct result of my neutrophil, WBC, and SC counts. I've now started producing yellow mucus from my sinuses - flipping great.
I don't think I have a fever, so I won't seek medical advice until I do. Currently in the bath with vicks vapprub smeared all over me (I set a sexy scene, right?!) in an attempt to steam out the mucus.
SO. OVER. THIS.
Thanks for listening to me moan and your continued support - really helps that others get it. Absolutely no one else does. 😞
Wow, I like it that you haven't lost your fire! I agree with the positivity thing, as if simply being positive will cure this wretched thing. It may make it easier to deal with but I, like you, haven't yet found a way to sustain that optimism.
About the neutropenia. Barnclown gave a good tip about the immunology etc. Meanwhile, isn't your GP supposed to do your monthly blood tests and check the neutropenia levels? I'd push for your GP to speak to your neurologist and agree a level which, if reached, will trigger some action - whether the addition of immune-boosting injections (as Barnclown suggested) or a reduction in your myco levels. You've already been on it for almost 6 months, have the lesions stabilised? Wouldn't a 2 g per day do the same trick? Or even a 2.5 g, even a small reduction could make a difference.
I know you're fed up with all these doctors that washed their hands off you. But without pushing your neuro to do the thinking and sort this out, no one will do anything.
Try not to lose it and not to panic just yet. You're not at a critical neutropenic level and it is in your control to make sure that you can have blood tests often enough to ensure that it doesn't get out of hand. You can have those tests every 3 weeks, if you can bear it, just to keep an eye on things.
My GP is supposed to do monthly bloods yes, but they haven't chased me and it completely slipped my mind as my memory is very poor due to the damage caused by the brain lesions. My last blood test was in July last year!
I've been on the Myco now for 16 months, not 6 The lesions have stabilized, i.e. no further lesions have formed but they haven't yet started shrinking. I was originally on 2g a day, but they increased this to 3g per day after a hospital admission and flare in September. I've felt better with the NL since increasing the dose, but worse in myself general healthwise. It's a difficult balancing act! I will be seeing my neuro in May and I will ask about neutro level triggers etc with him then. The problem is i always end up seeing one of his registrars and not even him! They also agreed that if the lesions showed signs of starting to shrink on my next scan we could consider starting to taper down my Myco, as I want to start a family as soon as it's safe.
I do feel very alone with this illness and with minimal support from ANY medical profession. It makes me take it all less seriously but then i end up not looking after myself and back in A&E and then the cycle repeats itself!
Hi Barnclown, thanks for sharing your story with me, it helps to know I'm not alone.
Can I ask what your neuro symptoms were/are? I've downplayed a lot of my illness to myself, resulting in me shooing away the severity of the systems that I was experiencing. It literally took me 6 months to walk and talk properly again, and dont even get me started on the Headaches!
Recebtly the Headaches have been starting to come back and my vision is deteriorating - the last eye exam I had by an ophthalmologist he said that the nerves in my right eye were not working properly and he wanted to check for further deterioration in 6 months time to decide whether or not to begin treatment to reduce degeneration.
I honestly feel like I'm falling apart bit by bit. I'm so unhappy and uncertain about the future. I thought that nearly 3 years on I'd near enough be back to my normal self, but I'm still stuck in this physical no mans land. I'm getting married in May and I'm just daunted by it, daunted by the prospect that it could be marred by me not feeling as well as could be. I'm considering asking my fiancé if we can postpone until next year but I'm so terrified of seeing that look of hurt and despair on his face - I can't do it to him.
Given the circumstances, can't you consider getting married on a very small scale in May, then postpone the rest for some other time? I'm sure he'd rather know you're his wife than worry about the whole process.
Anyway, sorry to barge in - I actually wanted to ask you about the optic nerve deterioration. My vision is also getting worse, particularly in the left eye. So far the exams have been fine but I'm seeing the ophthalmologist again in a few weeks and am bracing myself. May I ask - did yours do any specific tests that showed your nerve deteriorating? Secondly, has he suggested what treatment would he put you on?
Lastly, and I apologise for all these questions, how did you get diagnosed with CNS Lupus? I read about your headaches and the vision and I have the same, plus weird numbness and weakness on the left side (arm, shoulder, jaw, ear, face, eye) but my MRIs have been fine so far.
Thank you for your help and I wish you a good recovery.
Hi Purpletop, I'd love to but unfortunately it's not that easy. If I deteriorate then it will be something we have to consider, but at the moment these are just my fears. It's not enough to postpone a wedding when everything is booked, paid for and guests have all booked and paid for accommodation just because of my fears
RE: Optic nerve deterioration - I originally had an appointment with an optician who did a general eye examination and then did some additional field vision tests, which showed some issues with my right upper quadrant field vision (i.e. I missed quite a few dots in that section). she referred me to an ophthalmologist who repeated the field vision test and again there were abnormalities. He put dye in my eye to dilate the pupil and looked at the nerves at the back of the eye. He didn't go in to a lot of detail but he said my vision itself, i.e. the eye, was fine and healthy, but the nerves at the back of my right eye weren't all working. I didn't ask any more to be honest as he didn't seem to be too bothered by it and said it wasn't very normal for a young woman in her 30's. He didn't give me any treatment but asked to see me again in 6 months to check it again for any deterioration. I think it is getting worse, but we will see in a few months time.
i was diagnosed after falling ill with a virus and my Doctor suspected that I might have cauda-equina as the symptoms i presented (excrutiating long-term back pain, numbness, left sides weakness in leg and arm, tingling in my left foot, headaches, limp due to weakness in left leg, photo-sensitivity, fatigue). MRI's showed no issues with spinal cord and no cauda-equina, but further scans showed that I had 3 enhancing lesions, 1 of which was active when they finally got to imaging with contrast and PET scan (about 1 year after first A&E admission). I fell ill in August 2013 and was diagnosed and started on treatment in November 2014.
Hello again, Jen, and apologies for not replying sooner: have had a distracted 24 hours. Am glad to return here and find you've had a really good discussion. Purpletop's comments are always spot on.
it's clear you've been through A LOT and are going through even more....am VVV much feeling for you: my version of lupus began to be extra debilitating in my early 30s just when I'd remarried & been promoted at work...reading your descriptions of what you're up against makes me shiver with empathy. And yet, here I am @ 62: it was v tough going, but I did managed a v exciting & fulfilling career, my 30+ marriage is a constant joy and my combined therapy lupus meds are helping me feel better than I have since my 20s...yes, I'm fragile/vulnerable and managing my multisystem conditions agogo, but life IS good. And there are others like me here. Hang in there, Jen.
I will send you a forum PM (private message) from here in reply to your ? about my neuro cerebral stuff - hope that's ok (in case you haven't used this PM function: HealthUnlocked will send you an email with a link to my forum PM).
You need to go to see your doctor if you suspect that you are becoming unwell and are taking mycophenolate. This might mean that you will be temporarily taken off of the medication to be treated. Please go to see your doctor very soon.
The answer to the question 'Does lupus come under disability legislation?' is yes. Our booklet 'I Want to Work' says this:
'...If you need to take leave because of your lupus, it is good practice on the part of the employer to discount this in any calculations on performance related pay or enhancements, or in counting total sickness absence when starting disciplinary procedures relating to sickness absence. Such absences would be regarded as disability leave (which falls within a reasonable adjustment), and not sick leave, although they may be included in your employer's calculations of your entitlement to sick pay.'
The booklet also states: '[The Equality Act] applies not only to your existing role, but to all aspects of employment, including recruitment processes, training opportunities, promotion and redundancy.'
Thanks, George, I've just read that and it does give me a little more confidence. I still feel like a burden though, but this is my problem.
I'm considering having some counselling to address my guilt around becoming ill. I will ask my GP about this when I next see her.
Re: Getting medical help - I don't think it's helpful to go seeking antibiotics straight away at the slightest sniffle. My count might be low, but I want to fight things naturally where I can. If I develop a fever I will have no qualms calling my surgery for an emergency appt or out of hours appt.
The patient information booklet that came with your mycophenolate should instruct you to seek advice from your doctor if you think you might be developing a viral or bacterial infection. Please do be careful. Keep us up to date on everything.
I'm sure you DO want to do things the natural way - unfortunately, your body may not be in a state to manage that! The low count means your immune system is working with one hand (at least) tied behind its back. That is why you are told to seek medical advice so they can assess whether abx are needed prophylactically - not for the sniffle that may not seem bad but to prevent it turning into something that IS bad and which may do a lot of damage before it can be brought under control.
There is a very narrow dividing line when you have a compromised immune system - all it needs is for it to go pear-shaped at the weekend and the time scales do extend. A few hours is all it takes.
I agree with PMRpro. I am on MF and at one of my monthly blood tests my neutrophils dropped to <0.5. The doctor called immediately to ask if I had any sign of infection. I was tested again 2 days later and it was even lower so they told me to visit the clinic right away, and 2 rheumotologists and the nurse debated on weather to give me prophylactic antibiotics (I had mild fever). In the end they told me so stop MMF (it can cause bone marrow supression) and get retested in 1 wk. Luckily my counts went up so I was out of danger.
At the very least, your doctors should have your bloods done to make sure they don't drop further.
Going back to Neutrophil count, I was neutropenia prior to the treatments, my count was a lot lower than yours. I also noticed doctors weren't generally concerned by abnormalities (lower counts) in several of them other than Neutrophil as you seem to imply. It was almost what's the point of having these tests? Oddly, High dose MMF didn't make things any worse though I developed inflammation in other parts.
May I ask what type of lesion it is that you have? Sounds like a stroke? Do you still suffer from any ill effects at all? It sounds like a miracle that you went back to the full time employment. I agree that life with SLE & complications can affect us in many ways than one. Interesting thing (not sure if it is to you) is that it always seems to afflict people who has Type A personality and some of them are gifted, highly creative. Good luck!
I would visit your gp as soon as possible. Whenever my blood counts get low my rheumatologist tells me to stop.taking my lupus meds until count returns to normal. It's the only thing really if cellcept is working . You are doing the right things re hygeine etc. I would also leave a message for your rheumatologist as well. Hope things right themselves soon. X
Everyone - I'm so so sorry that I've not replied to you all. In typical CNS Lupie fashion I completely forgot that I had had any of these conversations. How embarrassing. I remembered once I was scrolling down my bookmarks list in my phone! *shakes head*.
I want to say a BIG THANK YOU to each and every one of you who had replied. Because I've sat here reading your lovely, helpful, empathetic and inspiring comments and you've reduced me to tears with your support. I've not felt like anyone else has ever understood what I'm going through until I read your comments.
Thank you. So so so so much.
I promise to reply to each of you individually tomorrow. Right now I've just sat down after getting in from work and preparing dinner, my fiancé will be home at any second and I don't want him to see me upset (even if they are happy tears!).
Morning all, just a bit of an update. I ended up with a pretty disgusting and stubborn dose of sinusitis and I started antibiotics yesterday. Gradually starting to feel better. But man, was I blowing out some wonderfully colourful gunk outta my conk. I didn't think the body was capable of naturally producing something that could possibly glow in the dark!
Have a very tough day yesterday, it was the funeral of my best friends 17 month old son. Was the worst day of my life. Seeing my best friend shake with grief whilst dealing with my own grief - I never ever want to experience anything like that ever again.
So, Mr Man up in the sky - I am not religious but I believe in some sort of higher power. I think we've all learnt enough. You like to test us and shove stuff our way to prove to ourselves that we can handle the load. But back the fuck off now, will you? That's enough. No more heartbreak for a wee while. Capiche? Good. Right. Onwards.
I am butting in to empathise and energise! You have some spirit there and a similar sense of humour to mine. I know!
Right. Low ebb? Been thete. Took all the love and support and let it feed my indignation that I was not being cared for properly. As one supporter said, I am worthy of decent care. How dare this illness bring me so low? How dare so called members of the caring profession cast aside my genuine worries? Like you, I am intelligent and articulate, howdare it reduce me to a gibbering wreck in the corner! There is one, cast iron person in your corner, who knows how it all feels. YOU. If you saw. Sister, friend going through all this would you not gird your loins in their defence? Well you ARE your best friend.
So. Action. What do you want/what care should you be getting ? We tell you
1 regular blood tests. Once a month at least. Who orders these? See this person, even if you have to ring a consultants secretary to get a quick appointment. Gp? See them. Say you feel that your levels should be more closely monitored. Ask for a batch of blood forms, filled in that you can use once a month. Get a phone call appointment at least, or get them to pre book a follow up appointment to review the results.
2 not seeing same GP? Not getting empathy from GP. Make an appointment with top guy. Look up your practice via NHS site and see who is named head of practice. Make a concise list, or do as I did and write a short speech. Keep it to the point, mention all of your concerns. Say you feel ignored or unheard. Get to see him/her. Ask for what you want. Be reasoned, pleasant (!) There is nothing you are asking for which is outrageous. All you want is basic care. Remember, you have control of this. THAT will make you feel sssooo much better believe me, ( well yes, after the adrenaline the crap will re surface but, that smile will not leave your face for, oooh minutes.)
3 if you can get to see the elusive neuro guy, get an apt via GP or secretary and tell him you are unwell and feel like you are deteriorating. Lay your case before him (and/or), and get himto explain what is going on and his treatment plan for you. Seems its gone missing. If he is vague get him to refer you to who HE hinks may help, like the immunologis Barnclown (hi Coco) mentioned.
I can spout all this because two months ago I was like you and thought I could take no more. Lean on us, me. I know the idea drains you of strength at the moment but let it stew over the week end. Get that fire in your eye. You've dealt with people way more scary and important than these jokers, I am sure, in your working life. Right? So think about it. Write it down and firmly, demand a decent standard of care for yourself. Who knows that date in May may pass beautifully, if not easily maybe much more manageably, if you are being supported by the correct treatment from interested doctors who you kicked up the **** bum.
I apologise for all the typos. My ipad will not let me go back and correct them as I spot them 😡. Neither could I edit a recent post. I am sure you can fill in replace blanks and errors.
Just think. HOW DARE THEY? I would also highly recommend that you take your fiance with you. God knows I had hoped I could be my own advocate alone, but the presence of my hubby, I am convinced anchored my requests both initially and on second visit. Grti your teeth girl, I know 21st century but if it helps go for it.
Much power to your indignation. Much love in your struggle. Much empathy.
Love and deep respect for your sticking in there alone til now
When you go to clinic do you get weight done? Ask nurse if you can see consultant as you are worried. Works for me.
2 NEVER touch anything in a hospital with your finger. I have had so many colds and worse. I ALWAYS press buttons etc with my knuckle. We all touch our faces unknowingly but not with our knuckles usually. That and a tissue to open doors. And plenty of anti bacterial gel. Im not paranoid, just watching out for myself.
I know this is late on the thread but I'm going through similar things with my blood work and was wondering how you made out with the meds and follow up treatment if any or are you still just monitoring? My specialists haven't said too much at this point and the Rhumy who put me on this pill I think is fairly new with the drug.
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The lesions have stabilized, i.e. no further lesions have formed but they haven't yet started shrinking. I was originally on 2g a day, but they increased this to 3g per day after a hospital admission and flare in September. I've felt better with the NL since increasing the dose, but worse in myself general healthwise. It's a difficult balancing act! I will be seeing my neuro in May and I will ask about neutro level triggers etc with him then. The problem is i always end up seeing one of his registrars and not even him! They also agreed that if the lesions showed signs of starting to shrink on my next scan we could consider starting to taper down my Myco, as I want to start a family as soon as it's safe.
Changed shape whilst taking Steriods
dangerously low white blood count whats next?
Low wbc
GI problems with Sjögren's - how to cope? 
