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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Lyn, I haven't been on the forum much recently but read your post on another thread and have been thinking about you. It sounds like things are serious with the neutrophilia this time. How are you and what's the plan of action? I understand if you don't feel up to posting about it but am thinking of you anyway. For some reason I didn't think it a good idea to ask for your e-mail address  . Take care. Julie xxx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Julie I missed you and wondered whether you'd taken off on an impromptu holiday or shinned up a flag pole like the Algerian at the World Cup; I looked twice ... I thought it might be you  That's where we should all be, in South Africa having a World Cup adventure, I've got my boots all dubbin'd up and ready to go, kits all ironed and packed and I'm just waiting for the call! Thank you for asking after me, that is so kind of you. I did intend doing a thread because I have some real concerns with methotrexate and at the moment it is causing a fair bit of worry I have to say. Neutrophils are still dropping and I've had an urgent referral to a haematologist. It's looking as though I might have to have a bone marrow transplant because they feel that the mtx may have done serious long term damage. I'm back for another blood test on Monday but if the neutrophils drop much more I'll be taking a trip to a hospital bed without passing go! I just keep getting one infection after another because I have no immune system to fight them. I've just finished a course of Cefalexin for yet another kidney infection! I feel reasonably okay and am trying to carry on as normal but I do tire easily. I'm on university open day visits with the twins at the moment, not the best of timing but I don't get to choose and it's necessary. Of course they want to go to different places so lots of visits on the cards! Done Chester and Keele, next week Manchester and Liverpool!! Anyway I'll stay positive ... something good is sure to come out of it all  How are you anyway? Have you started the Humira yet? Hope things are okay and you've started counting down to the summer holidays! Thanks again, Lyn xx
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Lyn,
I too have been wondering how you have been I left messages for you but you must have missed them. Hope things are on the up take care. Lorna xx
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Thanks for your concern Lorna. Your thoughts are very much appreciated  Lyn xx
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Rank: Advanced Member
Groups: Registered
Joined: 2/26/2010
Posts: 271
Location: hampshire
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Hi Lyn, just read your post, so sorry to hear that things arnt so good. I really hope that you get things sorted soon. Your uni visits sound very hectic! Take good care
love Heather
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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 of your problems with mtx, and all the infections you are getting, it must be dreadful for you.
I hope your neutrophils somehow manage to recover without the bone marrow transplant.
I don't envy you at all, having two lots of university visits, I found them exhausting but ,like you say, you don't have a choice in it. I suppose it's inevitable that ,even though they are twins, they won't want to go to the same university.
Lots of love and hugs, Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hugs to u lyn sorry hear of mtx being such issue,hope all becomes much improved without bone marrow transplant,good luck uni visits for your twins,how special having tiwns. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 2,237 Location: nr Southampton
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Lyn!
So sorry to read about the neutropenia- you know how worried I got first time around! Listen I have had it once in response to a drug, and I did get better.
I came off it after kindey infection after infection and ended up with acute renal failure- so this must be sorted out and they are right to be referring you quickly. The thing is we all take these drugs, given in good faith and hope for the best dont we?!
I hope that you get through the open days with the twins.
With the bone marrow, I have recently looked into this and you go on a register- brothers and sisters are ok but my parents not ok for a match. They will talk all that through I am sure- they may already have a match in mind. You will know I was heading for this with just little old RA....
Much love to you Lyn, you must be a little bit afraid at least.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member  Groups: Registered
Joined: 2/18/2010 Posts: 1,098 Location: farningham kent
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Evening Lyn
I am sorry to hear how poorly you have been in recent days, I knew you were having a few problems. You have so much time for others on the forum, giving such sound advice and reassurance to us.
I hope your team can get you " sorted ! without the need for this treatment. I know you are strong and positive and instill it in others, and you will be fine.
Hope your uni visits don t take too much of a toll on you, I know you just have to do these things for your children, you are a good mum.
Thinking of you, take care.
Julia xxx
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Oh Lyn, I have only just read this and feel so very sad for you, and worried.
I will e/mail properly and write...might have to get into the fire engine and come over with some medicinal wine, sorry, herbs.
Much love always,
Amanda
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Rank: Advanced Member
Groups: Registered
Joined: 3/4/2010
Posts: 576
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Hope things start to pick up soon Lyn and you won't need a bed or transplant. It is so worrying. You are managing amazingly if you are doing all the open days but just be careful! Wish we could send energy, good health and oomph with the e-hugs XX Ailsa
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi Lyn, just seen this as not on yesterday. Sorry to hear how things are for you, hoping that things pick up and you dont need the bone marrow transplant. Hope the uni visits go ok. Georgia is doing same at moment, her 6th form are going to Cambridge tomorrow to their uni to check out lots of others who have all come to show their wares!!! Thinking of you, take care, much love x x BARBARA
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Lyn,
So sorry to hear your bad news I do so hope that you will pick up and the bone marrow will not
be necessary.
You always have so much time with everyone else - Thoughts and prays are with you.
Rose
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Sorry to hear your news Lynn , really hope the hospital can help you and the bone marrow wont be needed, take care ,
Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Lynn,
So glad you are managing to stay positive, I really hope that all goes well for you, you have helped me so much since I was first diagnosed 7 weeks ago and I so hope that you get all the help you need. Good luck with the uni visits hope they aren't to stressful for you.
Anne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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Hello Lyn i hope you dont need the bone marrow transplant. You are so pleasant and kind with everyone you dont deserve to be ill. My thoughts and prayers are with you.
Kathleen Mc. x
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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How are you lovely 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 so much for your support and kind wishes everyone. It's having friends like you guys that make the difficult times so much more bearable. I am okay, waiting on the next blood test which at the moment seems to have become the highlight of the week! Will the neutrophils go up or will they go down; it's almost as exciting as the World Cup!! The worst bit is the tiredness and I'm just too weary to post much today but be sure I will catch up with you all soon. Take care Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 5/26/2010 Posts: 128 Location: Birmingham
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This is terrible. I'm sorry to hear you're having so many difficulties. You take these toxic chemicals - not because you want to, but because you want to try and lead a near to normal life. The last thing you need is to find you've traded one hell for another and then find the first hell never went away anyway.
You sound like a strong woman who will fight this tooth and nail and never give in. Good luck, keep that fight going and tell the RA and the neurophilia where to go.
Sending big hugs
xxx
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,081
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Hi Lyn,
This is dreadful, I will be thinking of you when you go for the blood tests on Monday.
I haven't heard a thing about the Humira - over 2 weeks since they said they would order it and send me a letter. Starting to wonder if the consultant has vetoed it? Haven't thought about phoning them yet as a) luckily depo is working really well and b) have been really busy. Also found out that there are to be major staff cuts where I work and we all have to do a competency based form to prove our worth in SEO and HEO grades. Anyone considered not up to scratch will be put into a 'redeployment pool' where you can see if there are other civil service jobs available and if not - ultimately redundancy. Am in panic.
I hope you have managed to get over your infection and haven't landed any new ones. Have you done the Uni visits with the twins yet?
Julie xx
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