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Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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I am not entitled to see the rheumy nurse as we pay privately. I find the ones at our local hospital not any help anyway as I have to phone and wait for them to phone back and the one and only time I have attempted this they rang back one week later!
Hope you have MUCH better luck, Lyn!
Much love,
Amanda
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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jeanb wrote:Am I right in assuming that this is the Blackpool Vic, Lyn? Well done Jean, spotted in one! It's actually Clifton where they're based but they're all a part of Blackpool, Fylde and Wyre hospitals, in other words the Vic! And the good news didn't last long! I didn't inject last Friday's Enbrel because with all the faff I forgot so did it Saturday. Being a day late I postponed the next one until wednesday, after I'd spoken to rheumy who said it was ok to carry on! Forgot that too, so got it out this morning to de chill and went shopping. Next thing mob is ringing, Mike on phone, Rheumy nurse had phoned and I'd to ring her back. Told Mike to put Enbrel back in fridge!! Funny how you get these feelings! Phoned her when I got home, (Morrisons not the place to do it!) and consultant says to stop Enbrel. Well, there's a surprise!! Having bloods done on Monday then I've to ring rheumy tuesday pm to get them checked. She will advise next step. That's good isn't it?  Oh dear me Eleanor I think you've hit the nail on the head, perhaps I don't need the rheumy nurse after all!! Seems like Amanda's experience is similar. Reckon I was better off looking after myself! Lyn x
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Joined: 12/7/2009 Posts: 176
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This thread has made me feel very lucky, as the two Rheumy Nurses at my hopsital are marvelous. When I see them, inbetween seeing the Specialist, they always have time for me. This last trip, I even got sent (within 2 day) a coply of what we had talked about, which was being sent to my GP. They are also very good on the phone, and the most I have ever had to wait for a call back, was 24hrs. I only hope this good practice spreads.
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Why did I know that it wouldn't just clear up, go away and leave me and my RA in peace?  Had my blood test done again on Monday, as instructed, and phoned the Rheumy nurse Tuesday pm for results. Neutrophils still very low and not looking good. Consultant has said to restart Enbrel, now penicillin has finished, but to keep off the Methotrexate. Continue avoiding kids and the rest of it but now I have only to eat food that I've prepared myself and try to remain in a sterile environment! She failed to see the funny side, obviously has never visited my house full of teenage lads and associated scruffy habits!!! I've to have blood tests repeated again on the 29th March and if no improvement may need to be considered for a course of blood transfusions. This to me really doesn't seem to be dealing with the problem; once my own blood kicks back in surely the problem will return? If the Neutropenia is the result of long term MTX it could be months before it's out of my system. Perhaps the blood transfusions are a stop gap? Rheumy nurse was in a rush as it was late and of course the questions didn't really come to me until I had slept on it, as they do!! So, still a very frustrating waiting game Lyn x
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Oh Lynn - this is awful. How on earth are you supposed to comply with those wishes in a house full of teenagers? Is this problem making you feel ill? Is it definitely an infection causing the low count etc or have you not been given any proper answers yet? I agree about the blood though - maybe the transfusion will just mask the problem, only for it to return.
Have you had a chance to chat things through with your GP yet - maybe he/she could put your mind at rest on a few of the points and also answer your other queries.
We are in Blackpool visiting Gwenda on the Tuesday 30th March. Do you fancy a coffee/lunch somewhere?
Take care, dear Lyn
Love Jeanxxx
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Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Oh Lyn, that really is a blow. But they are asking the impossible, surely? I don`t really understand about the implications of the transfusions - could they be to kick-start your resistance? I know my sister had some once, but that was because she was very anaemic, and had nothing to do with infections. I think Jean may be right, and perhaps a visit to your GP for further information, now that you have thought of some more questions? Take care, Kathleen x
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Thank you ladies for your thoughts, much appreciated. Since posting this morning it seems I have now developed a urine/kidney infection! What next for goodness sake?! Been to the doctors with the required bottle of very cloudy unpleasant smelling urine to be told I've missed today's collection so it won't go until tomorrow at noon. Explained the position with regard to neutrophils and compromised immune system but was informed my GP is 'not in' and the results won't be back before Monday at the earliest. So basically I can't have antibiotics until I've spoken to aforementioned GP so I will have to phone tomorrow. The low neutrophil count seems to have been caused by the Mtx, hence the reason for stopping it. My white count is low but within acceptable limits. I have been on Mtx for over 7 years and it was last increased over 18 months ago so I'm not entirely sure why that should be to blame, but those are the hospital's thoughts! It's going to take weeks to get the stuff out of my system so no signs of immediate improvement that being the case. I think I'm only getting infections now because of the lack of an immune system; I don't normally get infections at all! March 30th sounds splendid Jean. I will be in touch! Lyn x
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Sorry things are getting even more complicated for you Lyn. It's not good having to go through the weekend with a urine/kidney infection - it can get extremely painful. Did you get your sample in today?
Julie
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Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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LYN!
Get yourself to A and E NOW PLEASE
You do not have enough welly to fight infection- it is what the Neutropenia means.
PLEASE GO
Jenni how to be a velvet bulldoser
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Do hope youve gone a e lyn monday far to long especially with the neutrophenia. thinking of you. lv melly cuddly cats make my world seem so much more fun
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Joined: 12/10/2009 Posts: 653 Location: Notts
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Dear Lyn
I'm sorry that you're still having lots of problems, which seem to be worsened by the medics messing about. Yet again, lack of communication springs to mind. I do hope you can get some answers next week, so you know what you're up against and get the appropriate treatment.
Lyn
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Lyn
I agree totally with Jenni. You don't need us to tell you how poorly you could become with a urinary infection and no immune system. PLEASE go to A & E
Much love Jeanxxxx
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Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Everyone! Have spoken to Lorraine at NRAS (thank you so much for your concern Jenni, you never cease to amaze me with everything you already have on your plate!) and explained the present situation. We had a long chat and reached the conclusion that the way forward would be to either go to A&E (but it's the Vic!!) and hope to be seen before I contract too many bugs sat in the waiting room or speak to an NHS Direct doctor first and take it from there. I have phoned NHS Direct and spoken to a nurse who advised that if I feel okay at the moment, which I do apart from a temperature, I might be better going to the Walk In Centre in Fleetwood in the morning where I will be seen immediately. I have made an appointment. An NHS doctor is going to phone me this evening sometime and see if a home visit is necessary. So until then I'm just going to sit with my feet up and have a brew! I will keep you posted Lyn x
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Good girl - glad you're going in the morning.
LOTS of love Jeanxxxxx
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Thank goodness for the out of hours service. I agree that the risks would be less for you in waiting until the morning. I was a bit concerned that you might have to wait all weekend. The wonderful doctor's receptionist strikes again - I wonder where they qualify for the job???? Take care.
Julie
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Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Lyn,
Sorry to hear you have been going through all this. That receptionist needs to be reported, I'm so glad you got some sense from the out of hours people. However, having been told to stay in a sterile environment, the walk in centre is not where you need to be! I hope when the doc phones you tonight he will realise you DO need a home visit and to start on antibiotics as soon as possible. Thinking of you Lyn, hoping you get treatment tonight.
Love, Doreen xx
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Thats good well done nras for helping you see which way best and nhs direct,all best for your gp chat and enjoy putting feet up. lv melly cuddly cats make my world seem so much more fun
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Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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hI Lyn,
How are you today?
Doreen xx
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Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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What's happening, Lyn? Are you OK? Love Jeanxxxxx
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Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh gosh, just read this worrying post and am VERY concerned about you, Lyn....are you okay????
Love,
Amanda
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