Long story short: Having had RA for over 20 years, lots of meds early years. Hardly any recent years. Now have severe chronic neutropenia (not caused by meds but doc says its an off shoot of the RA). Neutrophils at 0.4 since January. In hospital 11 days with neutropenic sepsis. Advised not to return to work till neutrophils raised (because i am at significant risk of severe infection) but nothing is working. Just started on steroids and docs talking about methotrexate but i notice on here some of you get neutropenia because of the MTX!!?? I have been practically under house arrest for the last 3 months. Seriously depressed, getting agrophobic, want to go back to work but dont want to! Need to go back to work because pay stops soon. Waiting to see haematologist next wk. Can anyone give me any advice, i.e. what to ask the doctors, should i just go back to work and risk infection, is this even curable, should i be having a bone marrow biopsy? my questions are endless but the doctors make it difficult to ask, I feel a bit intimidated by them. Thats bad really because i am 58 years of age! lol. Anyway, thanks for taking time to read my jumble and I would appreciate any input. xx
HELP NEEDED WITH THE CURSE OF NEUTROPENIA.: Long story... - NRAS
HELP NEEDED WITH THE CURSE OF NEUTROPENIA.
Hi Anneileen. Poor you having something that is making such a huge impact on your life. I googled Neutropenia because it rang bell but I wasn't sure why. It's because it comes up whenever I get print outs of my blood tests to show the rheumy that's why of course. I don't understand, any more than you do, why an immunosuppressant such as MTX would be the drug to tackle it though? Presumably it's your rheumatologist who suggested this? I haven't read of anyone getting Neutropenia from MTX specifically but many do have problems with their white blood cell counts because of taking it - is that the same thing I wonder?
The only thing I can advise for sure is that you do ask your doctors for more information and explain how you are feeling about being homebound all the time. Ask them if you should go back to work now and if the answer is still no then push them to explain why and what they plan to do about it in order to help you. They can't expect you just to give up on your life 100% (as it sounds like you are doing). They will have no idea of how this impacts on you unless you tell them.
Remember these people are paid a lot of money to help and advise us and as it's their job. Explain to them that these are the things you need to know now - please can they explain as clearly as possibly and if there isn't time in that consultation then go back until you get some good, clear answers. Doctors are just human and they easily forget how enormous some of the implications of the things they tell us are for us and how they actually impact on our day-to-day lives. So they need reminding! Good luck and let us know how you get on - and do keep coming here it's a great place! Tilda xx
Thank you Tilda, for taking time to reply to my queries. My own gp freely admits that she does not know much about neutropenia and has started reading up on it. When i see the haematologist i will try to ask all the questions that i need answers to. I cant live like this much longer, it is driving me crazy, but because i have already contracted sepsis once i know how ill i can get if i go near anyone with an infection, and of course, it can be life threatening. Thanks again for your support i really appreciate it. Hope you are ok. x
You're most welcome - I'm pretty good at the moment thanks. You said you've had RA for 20 years and took lots of meds to begin with - what were they I wonder as I'm aware that things have progressed hugely in that time re disease modifying drugs and biologics? Is your RA still about or have you been in remission for sometime then if you've not been taking disease modifying drugs?
If your GP is now reading up on this condition then the two of you should meet often and discuss her findings perhaps - I'm sure she won't mind discussing them with you and answering your queries. She will have access to better information than you through the medical world. You should write a list of questions to refer to so you don't go away feeling so low still and please make the haematologist doesn't rush you! It must feel very lonely having to worry about infection all the time - keep coming here whenever you need to chat - there's usually someone around. Have you looked to see if there are any Neutropenia/ blood disorder forums anywhere as well? A friend of mine recently had a really terrible time with a rare neurological condition that has left her with partial paralysis and as she told her work colleagues why she was off work still two of them told they knew what is was because they had it too so she felt so much better being able to speak to fellow sufferers. Tilda xx
hello Tilda! every night for the past week just as I'm about to drift of to sleep I remember ''send Tilda a message!!!!!'' sooooo busy this week and find myself having early nights after busy days 
I've stopped panicking now after my last question, taken Gina's advice about happiness is for those living in the presence and making the most of every day!!! it's amazing what a few words can do xx
That's fine Williby don't fret - I'm just glad you're responding to this question on Neutropenia here because I haven't experienced it myself (yet) and I knew you had so was hoping you'd come on and advise. And re attending family events I have a brilliant excuse to rarely attend them - geographical distance! Tilda x
Hiya,
it is strange your GP is suggesting MTX as it can cause Neutropenia, I'm no expert but having experienced mild to moderate Neutopenia my consultant has told me to stop MTX to see if wcc rises....
What meds are you on for your RA at the moment?
My GP hasn't give me any info but my RA nurse has told me the basics about avoiding crowds and anyone with infections, the rest I've got from this site and google. It must be scary slipping into severe neutropenia and no wonder you've been feeling the way you have. My biggest problem is family members assuming I'm using my RA as an excuse for not attending family events!!!!arghhhhhh if only they'd ask......
Although my MTX has been stopped for a for a few months now, my WCC hasn't risen (as mentioned in my last question; thanks for your reply! ) It is the anti-tnf that must be casuing my drop and it's being closely monitored. I'm constantly taking my temperature follwed by anti-biotics!!
As Tilda suggests, start asking questions, It's hard though, In my experience GPs ect don't seem to give us the credit to understand whats happening to our bodies, us only the very basic information, thank goodness for google and Health unlocked!!
and to echo Tilda again, let us know!
I had low white cells when on mtx and had to stop but count didn't rise. Im now off mtx for other reasons and again have low count. Rheumy thinks it is my disease causing it. I have a diagnosis of lupus though.
Thanks everyone for the input. My RA was fierce in the first 10 years or so and then settled into remission with flare ups from time to time, i was on all the different anti inflam drugs and chloroquine, naproxen and others i cant rememer. I had a spell on MTX a few years ago but it scared me so i came off it. As i said, not been too bad up to a few months ago when i started with constant flare ups, real bad joint pains, fatigue, sore eyes, mouth ulcers, etc etc. They thought it may be Lupus but now they say it is the RA causing this and the neutropenia.
They have now put me on hydroxychloroquine and prednisolone and the specialist for RA said if that helps blood cells to go up they will try MTX again. I was told if i felt ill to go straight to hospital. I fell ill in June and within 24 hours I was in a bad way and went to A and E and they kept me in with Neutropenic sepsis. Up to that time i didnt realise how ill i could get having low white blood cells. I have been so afraid, and i have to keep taking my temperature like you did Wiliby because I could have an infection without knowing it.
Having said all that i cant live like this, i think i will just have to bite the bullet and go back to work, i work in a big call centre, air conditioning, lots of germs. I cant see the doctors saying, yea go back to work you will be ok because they dont want to be liable if they give me that advice and then i get real ill or die. I will have to make that decision i think.
Its real hard because not many people understand. They too think i am making excuses for not going places. The trouble is, the more i dont go places, the less i want to and that scares me too. Now im being told that i have mild thrombocytopenia too, which as far as i can tell is something to do with blood platelets. So it shows that something is going on with my blood. Just wish they would make a diagnosis or something, the waiting for appointments is stressful. I have to see the rheumatologist, haematologist, eye specialist, sleep specialist because of the fatigue, ent specialist because my voice has gone hoarse and weak. I think all these things are connected but you still have to see all the different areas of expertise. It is wearing me out.
Anyway, thanks so much for letting me rant on, and on, and on .....
It really does help to "talk" to people who actually understand what ones ramblings are about. and if you have managed to read this far, god bless you for taking the time to read my ramblings. Love to all. xxx AE
You haven't actually ranted on at all - your predicament sounds awful and you have every reason to need to offload. I just wish I knew more about it all - but if you ever need help or someone to speak to you could try the NRAS helpline - they are wonderful and can listen and give good, non medical advice. Do you have a good GP who listens? If so you should go to her to help bring everything together more for you. I tried mine with all my loose ends this morning and although he admitted he was baffled too he did at least make me feel that we're in this pretty confusing journey together which helped a lot somehow. Tilda xx
One thing you could ask is what it is about going back to work that puts you at risk. That might lead on to other questions, like "would wearing a face mask help protect me" or "would frequent use of hand sanitisers protect me". What you want to find out is not when you are going to be allowed back to work, but what you can do to get back to work as quick as possible.
In the meantime is there any way you could arrange to do some work from home?
medicine.medscap
emedicine.medscape.com/.../204821-
Thanks everyone. This is very helpful. I do have a good GP and we do discuss things but until she knows exactly what is causing the neutropenia its difficult to advise me. The rheumy specialist said i should not return to work till my neutrophil count is up a bit, being at 0.4 puts me at risk from any infections as i discovered in June. I wasnt afraid before that because i didnt realise how ill i could get. I had a course of G-CSF injections in hospital that brought them up a bit but within a week they had gone down again. This is a very expensive treatment and it didnt work either so what the outlook is i dont know.
Unfortunately i cant work from home. I work on the emergency 999 service and also on text relay (this is a service where deaf people can make a phone call), it used to be called type talk. I love my job and seriously miss it and my friends and colleagues.
The company i work for is not very good with sickness. If i return to work and then get an infection and am off again it pushes me nearer to being dismissed. I will probably get a warning when i go back anyway!! I have worked there almost 20 years but it does not count for anything im afraid.
So i will follow up on all advice given and see what the haematologist has to say next week. Thanks again everyone, its wonderful to be so supportive of each other on here. It makes me want to cry I am so humbled.
Bye for now. Ann Eileen. xx
I have had drug induced neutropenia during cancer treatment. The neutrophils are part of the white cells of the blood. Leucocytes are the other part.
They work together to fight infections. Without these you are as you know very prone to infection. The levels 2.5-7.5 are the normal blood values.
There is a drug G CSF which can be given in chronic neutropenia. Ask you haematologist about a bone narrow test. I know this test can be painful but it will give you a definative diagnosis. The structure of the cells can then be examined.
Don't be put off by the doctors they are there to help you. Take someone with you to your appointment too. An extra pair of ears is always good. Having a companion boosts your self confidence also.
Hygiene advice
Newspapers
Fresh flowers
Cheese and soft cheeses should be avoided.
Dairy products should be pasturised.
Use of hand Sanatiser or wipes a good idea.
Avoidance of large crowds or people with infection.
Hope this advice helps and if I can be of any more assistance feel free to in box me.
Hugs coming your way.
Carole.
Will forward you another link to read.
Can't help at all with the neutropenia about which I know nothing. But just to say that your blog is absolutely not a jumble - far from it - so when you see those doctors sock it to them with confidence because you explain your questions very clearly & concisely.
All the very best to you,
Christina x
Thank you Christina, that is so nice of you. xx
Just a note on your work issues. Don't accept being bullied into going back to work before you are fit enough.
Seek some advice Fromm ACAS they provide good structured advice for all workers. Well worth a phone call.
Good luck
Carole
I have just challenged my employer the NHS to reduce my staging of sickness from a stage 3 to a stage 2. I did it with union representation.
Hi Anneileen, Just to say stay with it, take all the advice offered lots on here know exactly where you are coming from, we've all felt we are rambling on when really we need someone to hear us, and hear us they do on here, So have a good day and try not to worry. many blessings Carol
My sisters are both deaf so I'm familiar with the minicom service you have been a part of and it's been invaluable to me and to them in the past - email, text, WotsAp and skype have taken over now for many of course but for a while it was the only way we could communicate - living at a distance. There are jobs for home teleworkers so it might be worth looking into them while you are laid up as you probably need something to divert you from all this and give you some income again. I've been thinking of you a lot today - take care. Tilda xx
I was worried that the new technology would divert people from using our service but it is so, so busy still. Theres dozens of operators taking these calls and they are none stop all day, and night. It is a wonderful service but it is good that there are so many other ways for people to communicate. Years ago it was impossible of for a deaf person to make a phone call.
Thanks again for your kind thoughts, you sound like a very special kind of person and im sure you are a valued member of these forums. xx
Oh I don't know about that I'm sure I drive a lot of people nuts with my nutty ideas! I had to tell my both my sisters that my dad had died suddenly using the minicom service (hope it wasn't you!) and I felt so sorry for the minicom woman for being stuck in the middle of that one. But when mum died even more suddenly a few years later I had to do it by text which was far worse. Tilda xxx
There are lots of sad and upsetting calls, especially when its something so enormous as relaying a death to someone. Many calls are to 999 emergency, these can be quite interesting as well as daunting. Of course on the other hand there are so many lovely calls like when someone wants us to sing happy birthday to the hearing party, or shout "its a boy, or girl". Some or us have actually relayed from the emergency services how to deliver a baby, that is by far the best type of call. Ive "delivered" one or two in my time. lol. xx
HI EVERYONE - Quick update on my Neutropenia and haematology appointment today. Having a bone marrow biopsy next week. Told not to return to work as any infection is potentially very serious. I wish they had done this test whilst i was in hospital. This is just dragging on for ever. I go on half pay in November so I am praying they sort this out by then or I will be in serious trouble. Thanks again to everyone who showed interest in my story and hope you are all ok. Any bone marrow biopsy information greatly appreciated. xx
Hi There, I have just recovered from neutropenic sepsis and was hospitalized for 5 days with a neutrophil count of 0, isolated from my young children for the duration, so I understand your distress. I feel like I've lost a month of my life, so my heart goes out to you that you're still suffering.
I have also been told that the cause is still unclear, possible candidates are virus, sulfasalzine, or RA. I'm hoping it won't happen again... but without any real understanding of why it's a bit tricky to know what the future will bring.
I really hope that you get some answers from your bone marrow biopsy. I haven't had any experience of what that entails but I hope you get a resolution that enables you to get back to work.
warmest wishes,
Alice
Hi Alice,
I had neutropenia about twelve years ago and it hasn't reoccurred. My neutrophils were at O.OO2 and I had a high fever - 4O degrees - and septacaemia. I was told that it was caused by a rare reaction to Sulphasalazine which I had started about 6 weeks previously. I spent 3 weeks in an isolation room and a further week on the rheumy ward. Whilst in isolation I had 5 injections of growth factor to make my bone marrow make some more blood cells - the first 3 treatments didn't work and they started talking about a bone marrow transplant, but the next 2 injections kicked in - and then my RA went into total overdrive and I was completely seized up, hence the week on the rheumy ward.
For anyone reading this and feeling alarmed - don't be, it's really rare:-}
Hope you're recovering now Alice - just make sure that you have your flu jab and if you havent had it already the pneumovax.
Cece x
Hi Aliced, I'm sorry to hear you have been suffering with neutropenia too. It is an awful isolating thing to have. I do hope they get to the bottom of your problem. I am still having a lot of problems almost 2 years now with very low neutrophils. I am back at work now, even though I have been told i am "walking a tightrope" mixing with people. I couldn't stay at home any longer, I have a life to live. Im still at the haematologists every month or so and the rheumatologist thinks its the RA and i may have Feltys Syndrome. Im on horrid drugs that give me awful side effects, I'm trying to keep up at full time job and I'm exhausted. On top of that i have just found out that a Mirena coil that I had fitted over 10 years ago was not even inserted into my womb, it has been pushed into the muscles on the outside of my womb and there it has been all this time. They can't get it out now without a hysterectomy! I am going for a CT scan this week to find out its exact position. I don't know if i am well enough to cope with surgery but if I don't have it removed and it pierces an organ then I'm in trouble. So I have a decision to make and i don't know what to do.
Anyway, thanks for your comments, sorry to go on but I am really stressed at the moment and it has been good to share. Thanks again and hope you soon feel better. Love Linda. x
Not what you're looking for?
You may also like...
I Need Help & Advice.
In despair and in need of help
How do you live & work etc. with neutropenia?
Newbie - In need of help
Newly diagnosed - NEED HELP!
I need your expert help !!!!!
Feet problems help needed please.
need peeps help those who suffer point the way
Need advice on Etoricoxib, can anyone help please !
