I've read and have an alert card to notify any medics of being on Enbrel which may mask symptoms, although I had a few infections this year, I was aware of it and as soon as I had a high temperature I went to GP.
This time it's puzzling; the whole family are unwell, almost flu like, sore throat and chest; my husbands very unwell with it, now I have these symtoms also but mild, I'm aware I'm not right, my temperature is only slighty high (but thats seems to be normal for me now)...
So, have I the same bug but enbrel is masking the severity? I'm not so worried more interested on why?
and Bacterial or Viral infections, are both types a concern to us?
I don't know enough about Enbrell I'm afraid but I think the answer is with our lowered immune systems (yours especially with the low WBCs) we are more at risk from all infections whether bacterial or viral. Maybe your immune system is picking up again now you are off MTX?
That could also explain why you've been flaring mildly recently because its your over aggressive immune system that causes flares if course. So maybe that's why you've got this horrible virus mildly? Have you had your wbcs checked again lately? I worry about masking too although my GP told me MTX doesn't mask in the way that steroids do I'm not convinced!
Hope you all feel better soon. Tilda x
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Hi Tilda,
it's strange really, I'm having a very 'normal' bug!! there can't be an infection I don't think but will keep an eye on it, today I'm rotten and taken to bed, can't remember the last time I did this and enjoying the rest
My flaring has settled again thankfully, I think thats why I'm not so panicky this time and I,m starting to stop imagining the worst every time I get a little twinge!
My wbc is still low but not too bad at 3.2, haha its the pollyanna in me thats thinking this bug is good as it may cause it to rise a bit (if it drops below 3 I have to stop meds)
Did you have to stop the Enbrel when you had the infections? If so for how long and did your RA get bad.... are you covered with any other immuno suppressant such as Metho or Leflunomide? My consultant suggested I stop Leflunomide and just have the Enbrel now. But I am concerned should I get an infection or need some surgical procedure when i have been told to stop the Enbrel [two weeks before and two weeks after any surgical procedure].He said the Enbrel would wear off after a week. I can't bear to think about going back to how I was before the Enbrel. Does anyone out there have any info or thoughs for me XX
Hi Williby and Magglen. Sorry no answers for either of you as I'm only on MTX and Hydroxy- neither in high dosages either. Sorry you are in bed but glad that you are too if you know what I mean? It's cold out there.
Yes we head south on Saturday driving down to Edinburgh. Frustrating as I'm trying to prepare self for interview tomorrow (about which bad vibes btw) but OH is sleeping off a nightshift with another on Thursday night - house is a dump and I can't Hoover because it wakes him. I'm the only one of the four of us who has packed - including all the leaves artwork and my metject - apart from the one I'm psyching myself up for later today (first time on my own!)
Get better soon and hope those wbcs start fighting back as of now! TT xx
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I find it frustrating when my hubby is on nights, everyone tip toeing around!
Hope the interview went well today and your bad vibes were unjustified xx
Hi Magglen,
I was on MTX with Enbrel but because of continous low wbc and infections I was told to stop until wbc had risen, that never happend after several weeks but because I am coping very well without the MTX my Consultant has suggested I remain of it.
I have been told to withhold enbrel if I have another fever or infection but so far I have been having mild fevers but not high enough for me to stop taking Enbrel (maybe this week I'll not take it though)
I do worry like you if for any reason I may stop, I have dental work coming up soon and have delayed asking if I need to stop meds or not. I have a false sense of security as my RA is so quiet that I could manage a few weeks without it......
Coming off it for 1 week for infection doesn't worry me too much, I've read somewhere (here I think) that Enbrel stays in system for a few weeks. My consultant has suggested that we may start reducing the Enbrel to once a fortnight, so I assume it must cover me for a couple of weeks.
If I don't take it this week, will l let you know if it affects my RA? x
It's an interesting question....is it that our rather abused immune systems are so feeble that they can't quite get their act together to display the normal early warning symptoms so you don't get the little prickles that tell you you're coming down with something, and then whuumpf......it all goes wild?
But I wonder whether your family have got something Flu like and if you've had your jab it's keeping things more at bay? I really should have paid more attention to my biology lessons at school....
I'm watching my WBC, when I was diagnosed it was 11.5 and has slowly and steadily been dropping and is now 4.5 so I'm starting to twitch even tho' rheumy doesn't seem bothered. Did yours drop all of a sudden or has it also been gently falling? Polly
Hi Polly, haha I really thought you'd have an answer for me
I'm actually due my jab tomorrow, not sure if I'll be allowed it now, forgot to ask my GP when I saw her earlier; she is testing me for various things, glandular fever being one of them; when I told her I never recovered from tonsilitis 8 weeks ago (and been having low grade fevers, weight loss) she decided to run some tests, I'm so glad as I've been too see another gp twice now about it and she's dissmissed it both times....
My wcc started to drop when I started enbrel over a year ago now, seems to hover between 3 and 4; my RA nurse says she would like to see it at least around 6 or 7 but my consultant says to continue with enbrel unless it drops below 3.... I see his point though, apart from the odd infection (or 6!!) it has been great for me. I do worry it'll drop further and will need to come off.
Do you not feel your RA is better with the drop in WCC? x
The RA is great (well relatively - you know what I mean ??) it's just I have energy of a salted slug, and I blame WBC for that I think more than RA.... Px
I've noticed since I started taking DMARDS I don't get regular symptoms from infections, I know I feel ill, I might feel sick, exhausted, have pains in non-RA places, headaches, pounding heart, dizziness, double vision and an inability to regulate heat and cold. I don't feel like I've 'got a cold' though, it is really hard to know exactly what is causing the illness, I've been feeling like that this last week, stopped the Leflunomide but still feel awful, no idea why. When I get like this I just stop the meds and wait until I feel better, and put up with the pain!
YES! you've explained exactly how I feel when somethings not right, before I read your reply I said to my GP this morning that I feel pains but not in RA places!
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