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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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I went to the doctors about my knees only to find that my monthly blood test results were back and I now have Neutropenia!! A substantial drop in my neutrophil count means I'm left with an immune system unable to fight infection. I apparently already have a throat infection (news to me!) so came home with a packet of penicillin to fix it, hopefully before it worsens. I'm off the methotrexate until the neutrophil count gets back to normal but didn't think to ask about the Enbrel. I'll ring on Monday and ask but any thoughts in the meantime? Anyone know what causes this drop in neutrophils? I've been on anti tnf since 2003 without anything like this happening. So, GP advice: avoid crowds, old people, children, (most of the population then?!), methotrexate, breathing in, touching stuff , putting grubby fingers in mouth and most of all use the crutches like I told you previously!! I laugh (otherwise I'd cry) but would appreciate any one's thoughts on this. Thank you, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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if it were me Lyn I would stop that enbrel immediately until told to start again.
it can be a problem on this medication.
Love to you
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Lyn, Sorry to hear you have an additional problem, with the neutropenia. I hope things improve and you feel better soon. I`m on humira, and I`m told not to take it if I have an infection, so I imagine it would be the same with the enbrel. If you take your GP`s advice you`ll have to become a hermit & find a secluded cave somewhere!! Feel better soon, Kathleen x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Oh Lyn, I am so sorry! Will google this and find out more. You need it like a hole in the head. I hate the thought of you being of meds too. you really do need to sort out the Embrel: musn't take chances.
Don't let it get you down. Another of the many blips in life.
Eleanor x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Dear Lyn,
Have just replied to you in another thread.. You need some nettles! Hope the infection clears up fast..hard to keep away from people!
Are you on Enbrel?
Love,
Amanda
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Lyn,
Sorry to hear you have this extra complication, just what you need!
Neutropenia can be caused by mtx and enbrel so take your pick!
I think you should stop the enbrel as well temporarily but check with your rheumy nurse.
It may be just a blip and the neutrophils will rise, lets hope so.
Hope your throat infection gets better soon.
Love, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
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Sorry to hear you have an infection Lyn, I don't know about the neutrophil count but when I had antibiotics for an infection I rang my rheumy nurse who told me to stop the enbrel until the infection was clear. Don't know if that applies to all infections or not?
Hope you feel better soon.
Love
Sheila
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi lyn sorry hear that hope infection clears up soon for you yes i have heard of it,gp watchs blood count for this. and in other direction if they suddnely increase re neutophils then its clear i have an infection. and im told stop mtx,if was on enbrel would also be told so same while on takin the anti bioctics just becasue the drug makes infection take longer to heal. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Lyn
Sorry to hear about this latest problem. I'm following you with interest as I seem to be mirroring you. I'm on Enbrel, so will have to watch out for any odd symptoms. I must say I carried on injecting when I had one cold after another in the space of 2 weeks, followed by four weeks of sore throat (not bad ones). I don't seem to have suffered by doing that.
I'm going to see the consultant tomorrow, so will be interested to see what my bloods are like. I've felt rather unwell since the beginning of the year, whether that's down to RA or something else I'm not sure.
Lyn
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Thank you everyone for your thoughts! It seems common sense to stop the Enbrel and I don't know why I didn't think to ask at the time. I even did my injection yesterday and it wasn't until after that it occurred to me. I suppose because I don't actually feel ill, I have to keep reminding myself to take the penicillin. My throat isn't even sore just a bit dry. Quite how my GP thinks I'm going to live my life for the next three weeks I'm not entirely sure; I have four kids of my own and have had to banish their friends over the weekend so it looks Kathleen as though a secluded cave might be the only answer, as long as I remember to take my crutches!! Eleanor, I 'Googled' it but couldn't work out how it applied to me!! I don't actually mind being off the meds, it will give my body a rest and I'm not sure they are all doing what they're supposed to anyway! Lyn, I too carry on with Enbrel when I have a cold, although they are infrequent. I've got a fridge full of Enbrel I can't afford to stop injecting there will be no room left for food  I don't seem to be able to get Healthcare at Home to understand that I have plenty of stock and don't need another delivery yet ... next one 15th March!! Don't you get to collect your own blood results and keep them in a book? Amanda, nettles? In hot water? Now the rheumy nurse. I don't think I have one of those, yes even after 22 years!! There's my GP, the HCA who takes my monthly bloods at the surgery, the consultant rheumatologist and the Charge Nurse who is on the Rheumatology ward at the hospital and who does my DAS score etc every 6 months. Suppose the latter might be the one to ask?! Thanks again to you all, Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Oh Lyn - the unbounded delights of RA eh?! So sorry to hear of this latest little hiccough in your long line of hiccoughs!
Although I am very behind in answering your post, I agree that you should take yourself off Enbrel until you have finished the antibiotics. Hm...but then I do tend to remove myself from all meds given the slightest opportunity!
Take care, dear Lyn - I'll be replying to your lovely e-mail soon.
Much love
Jeanxxxxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Well delights, I find that I do actually have a Rheumatology Nurse Practitioner!! Now who would believe it after 21+ years?! Wouldn't you think someone might just have mentioned it at some point? Anyway, I left a message on Monday and she returned my call yesterday. Apparently I don't need to stop the Enbrel but yes to the MTX. Not what I expected at all! She also said a month was too long to leave bloods (arranged by GP) and to organise another test for 15th. GP surgery none to happy at going against GP's wishes but made the appointment anyway. Hate getting caught up in bureaucracy and red tape. Come next week hopefully bloods will have recovered; RNP is going to watch out for results and speak to consultant to keep her up to speed. A result  ... for now at least! Thank you for all your thoughts  Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Hi Lyn, I`m pleased you`ve found you have a rheumy nurse - better late than never!! Glad you got a result, and hope things improve for you now. Take care, Kathleen x
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Rank: Advanced Member Groups: Registered
Joined: 12/10/2009 Posts: 653 Location: Notts
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Hi Lyn
Let's hope next week's bloods will be better. Glad you found your rheummy nurse, I'm sure you'll find her very useful.
Lyn
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Sorry to hear about all this Lyn, I'm glad someone has taken the initiative to get a proper check on you blood results.
Julie
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi Lyn ohh glad youve found out you have a rheumy nurse,disgraceful youve not been informed of such all this time. thats annoying re go not liking re bloods but in end its for your benfit not theres. take care hope next lot are much imporved for you. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Lyn
I think its outrageous that with the medication your on you havent been given a Rheumynurse. I dont understand why there isnt a process or trigger where you get this necessary support. When I switched to my hospital I asked for a rheumy nurse and I was given an appointment to see her in June! Still better late than never.
I hope immune system rights itself pronto.
Take care
Mari xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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I imagine I kind of missed out on the Rheumy nurse; they didn't have things like that when I was diagnosed all those years ago! I suppose more recent additions to the 'RA fold' found out immediately but the hospital probably never even thought to back track and update the rest of us! I'm not exactly sure what role she fills but I guess I'll likely find out soon enough! Thanks again everyone. Lyn x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 854
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Hi Lyn,
it is more a case of the role that they are supposed to fill actually. I am sure that there are very good nurses out there with good facilities but in my experience I have found that when I have had a problem and telephoned, the first barrier can often be 'message box full'. Got past that but have never had a call back and have reverted to just telephoning the consultants secretary as I used to. I am sure that the service is like all others and dependent on the person themself and the time that they have to deal with issues. Personally, I do not rate it at all.
Eleanor x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Am I right in assuming that this is the Blackpool Vic, Lyn? 
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