How do you live & work etc. with neutropenia?

Hi guys,

This is my first post, as I'm at a point where I just can't find any answers.

in 2010, I was diagnosed with rheumatoid arthritis, Ankylpsing spondylitis & over the last few years fibromyalgia & endometriosis. At the start we tried sulphasalazine & methotrexate of which wasn't working well, nor could I tolerate, I went on to enbrel which worker for a year or so, whereby during the time I has 2-3 episodes of neutropenia of about 1.8, I'm aware the threshold in these treatments is 2.5.

I was put on humira, which was effective until I was diagnosed with fibromyalgia in April 2015; in July 2015 I had a few odd neuro symptoms whereby humira was stopped pending investigation which was put down to fibro.

From then I had to fight to get humira back-In may 2016 we tried methotrexate injections for a month which failed, I was finally put back on humira in June. But since then I have been pretty much constantly neutropenic going right down to 0.9 after a bout of gastritis, but it's never been above 2.0 since then.

Sorry for rambling, the backstory I added as my assumption has been that my immunity is totally & permanently buggered from on/off these meds?! I do yoga daily & eat right, but I just can't get to a place where my bloods are ok

But anyone else in this boat? How do you guys live?as my work won't let me back if it's under 1.5, occ health/gp tell me I shouldn't even be working full stop. But I can't, I'm 30, my brain craves so much more than loose women!!! How are your social lives?

Sorry guys, just going loopy sat on this sofa prison & wondered how others get through it xx

10 Replies

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  • I wish i had an answer for you darling,but sadly i don't. Have you tried dr google.xxxx

  • Thank you doll, I've given it a go but it's more geared at what & why nuetropenia occurs rather than how to live with it xxxx

  • have you contacted NRAS helpline as it sounds like you are running low on options. They may be able to offer some practical advice. I really hope they can, best wishes.

  • Thank you- they are now on my list of people to call xx

  • I don't have one , I only see my friends that have RA..no longer than hour or two..then I'm exhausted..it's to hard to date for me..I can't lie and say I'm not I'll , can't date and keep up with dating life style..it's lonely..but I started to do other things . Sad , but im.older and its ok ..but I deeply feel your pain..

  • Awww I feel you so much, there must be a way of living, I'm sure of it 😊 Xxx

  • There is a (low/deficient) vitamin B12 and vitamin D link to Ankylosing spondylitis.

    Also Fibromyalgia is a symptom of both vitamin B Deficiency and also Low Thyroid/Under active Thyroid. (Hypothyroidism)

  • Thank you I'll def being up the thyroid with the dr & going to get some vit D 😊 I think we can't rely on the health service so much especially if it's not cancer/diabetes(of course they are nasty illnesses that need care & treatment ), it's just unfortunate that money is so tight that help can't be given to those in pain as much, so I'm trying to do whatever I can to support myself xxxx

  • Coconutpie, If you get your thyroid's and other bloods done, do consider asking for a printout of all your bloods and the blood ranges too, (for your own records) and post your results up on Thyroid UK, here again on Health Unlocked.

    Thyroid Uk members have helped me and my Family members get well when Doctors have failed us. Thyroid, B12 Deficiency and more are often over looked, we are told we are fine/OK/nothing wrong with us yet we are still left with presenting symptoms.

    You mentioned cancer and diabettes, many are now learning that 97% of cancers are actually curable, (without using chemo and radiation,) but we do not get told this.

    People are curing themselves of diabettes too.

    I and many others have found that to get to the root of many illnesses we have to almost work it out ourselves, NHS medication rarely gets to the root causes, and most prescribed medication has many side effects that can lead to other medical problems, like a domino effect.

  • Thanks for your replies dudes, I have scoured the internet obsessively looking for answers to this neutropenia riddle, I firmly believe that it is a permanent chronic neutropenia as I have come off humira a few times due to chest infections etc, with bloods still going no higher than 2.0 once better, so it can't be a humira induced thing. I know the science in the sense that autoimmune illnesses lower white blood cells(wbc), & that as humira is an immunosuppressant lowering it even more etc.

    I take(some for diff conditions like a hiatus hernia/migraines/endometriosis/anxiety):

    Humira, omeprazole, ondansetron, propananol, folic acid, ferrous sulphate, pregabalin(but this is a high 600mg dose for anxiety-a strange drug as lower doses are more effective for pain than high) I have tramadol, oramorph, coediene sulphate, OxyContin - but these unfortunately cause migraines if I take more than one dose, paracetamol/Tylenol is the only painkiller that doesn't, but it's not enough! In regard to supplements I take a multivitamin, vitamin E, cod liver oil, coconut oil, zinc & b12

    My body is a big old riddle lol, As when my endometriosis flares so does my arthritis & various other 'combination flare ups', I'm like the crooked house lol-we plug one hole but water pours from another area! I mean I have quite a light hearted but dark humour about it, as you guys suffering too know it's the only way to save our butts from that dark humour becoming dark moods!

    But yeah, it's a nightmare because I work in a hospital although its admin & due to this I've been off for a few months - I know the daftest place for a neutropenia patient!!! my OCcy health dept told me off record to look for another job, when I said maybe a dr surgery or a school he said no as it's just the same, if I was to work in a call centre it's all stress(which causes flares)/target driven & full of people!!! Arghhhh lol I cant think of any almost solitary jobs for someone who is just a standard admin person!

    It sounds like I don't know what I'm asking & I probably don't now as I'm just so perplexed by the riddle of my own body. My Rhuematology dept is keeping an eye on my bloods, as I made a very flippant comment about hair fall with them advising that if I find any lesions to report it as I may need to see a haematologist to get injections that increase WBC(however these are v £ on NHS & I think it needs to be worse before that) so I'm suspended in this constant neutropenia catching every chest/cough/cold/sickness from people I come in to contact with, it strains your relationship being alone at home when the other works.

    So what sort of advice am I after if I don't know what I'm asking lol!! Well if you are a neutropenic person or have had it, have it chronically etc: what's your job? Do you work? What jobs can immunocompromised patients do?

    A very frustrated girl xxxx

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