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Date: 01.09.2014
From: marlene

Subject: Hi Colin

Haven't posted to you for ages. Just wondered how you are doing.
Hope you and family are good. xx
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Date: 04.09.2014
From: Colin W

Subject: Re: Hi Colin

hi marlene

sorry took so long to get back , myself much the same , no good days just some are pretty bad , had 6th infusion this week & still need high levels steriods 25mg to be able to funtion at all .
dont know what they are going to do with the biologic as my bloods are good & CRP 0.20 but they do a test called DAS28 & out of the 28 joints , all 28 were swollen & 23 in pain , so dont know why my blood resuls are good .

mention my father-in-law died in may this year , taken us ages to sort things out for my mother-in-law , for 6 weeks she was getting 67 a week coming in , why the DSS treats old age people like this I dont know , but we got it sorted & got her attendance allowance , ourself we need the roof off , its 120 years old & the nails are rotten so need to take the slates off & have them renailed , going to be so much fun

hope you are doing ok , & have you been on to them doctors about your arthritis . tell them you wonder if you got Psoriatic Arthritis , if they say no , tell them Dr Colin said yes
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Date: 04.09.2014
From: marlene

Subject: Re: Hi Colin

Hi Colin, Oh bless your mother-in-law I hope she is settling and coping. It was awful when I lost my Dad sorting everything out for Mum.

Oh dear Colin what a nightmare. Hope the weather stays good for you when the roof work is done.

Colin sorry to hear you are so bad. I have learnt so much about all the different Arthritis on here and I can see you are struggling with your meds. I hope you can get something to help you soon.

I have spoken to my GP but as you say they say No. I mention it every time I go. I have had a steroid injection in my shoulder and am waiting for another in my elbow in the next couple of weeks so I will mention it again this time a bit more firm.

Take care Colin and hope you are feeling better soon.
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Date: 04.09.2014
From: bsk

Subject: Re: Hi Colin

Colin, come and post on our thread - it's for everyone.
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Date: 04.09.2014
From: Colin W

Subject: Re: Hi Colin

lol bsk & marlene , I dont look at it realy ( the thread ), had so much going on & with my father-in-law we still dont have a proper death certificate , its over 16 weeks now & expecting it to go for a inquest so could be another 3 months , he had Parkinsons , + TIA & epilepsy & heart problems . Just hope it all calms down soon & I start to feel better

my docs are talking about changing me onto the same drug rhona is on , not sure about it realy as the side effects are scary but think I wont have much choice in the end

marlene , I dont know much about PsA but just pretty sure saying OA is the easy option , all damaged arthritis joints will end up looking the same , I would ask to be refered
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Date: 04.09.2014
From: rhona

Subject: Re: Hi Colin

Hi Colin, I thought I would join in and say how sorry I am to hear that you are still suffering. I am hoping to get another infusion soon, as soon as my white cells go up a bit. I have had three courses of the rituximab and I can honestly say I haven't had any side effects from it. Perhaps I shouldn't have said that (touch wood) I don't want to tempt fate. I like the fact that the infusions are not every month, some people I have heard can go two years before needing another infusion, it has been 10 months since my last one. I haven't had a cold or infection since being on it Colin, and they say the brain disease is vey rare and I don't think anyone in Britain has ever had it. I don't think it's any worse than any of the other infusions for side effects and if it has a better chance of working then maybe you should think seriously about getting it.

Sorry to heat about your father-in-law, hope things get sorted soon.

My daughter has slates on her roof too, her house is over 100 years old but they last so much longer than tiles.

Take care and hope you feel better soon. xx
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Date: 05.09.2014
From: rhona

Subject: Re: Hi Colin

Colin, I should have said that my white cells are a bit low 3.6 but not sure if the rituximab is to blame for that or not but other than that I've had no problems up until now.
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Date: 05.09.2014
From: marlene

Subject: Re: Hi Colin

Morning Colin, hope things get sorted soon re your father-in-law. I feel for you all!!!!

I hope the new drug helps you as much as it helps Rhona.

You are right Colin I will definitely ask to be referred.

Take care and I hope everything settles soon for you and Mrs Colin. Best wishes X
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Date: 05.09.2014
From: bsk

Subject: Re: Hi Colin

You sound as if you are under a bit of stress, Colin. I hope the rituximab works for you. I've just refused it because I'm sero -ve and it doesn't work as well, if at all, so now they have to apply for funding for another drug. To be honest, I'm getting less and less bothered about what I'm on as they all seem to disagree with me but I know that's not the case for everyone. Take care. xx
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Date: 08.09.2014
From: Colin W

Subject: Re: Hi Colin

for marlene & your GP , 30 years is a bit late but they could stop any more damage being done

http://www.dailymail.co.uk/health/article-2740126/When-tiny-patch-scaly-skin-sign-arthritis-heart-problems.html

bsk , think its strange that some of the biologics you have to positive RF , just means only RA is treated and even then not all , the drug I am on is the same , they should not have to apply for funding as it was already agreed for you on enbrel but it wont take long anyway .

rhona , I am 100% sure I would end up on that drug , strange as most of the bloods look realy good apart from my White cell count which is high but steriods does this & Neutrophils is high (type of white blood cells and form an essential part of the innate immune system)

as for the roof , it had damage in the winds while I was in hospital , just will be pleased when it done , we moved here in 1985 & its one of the last things we need to get done , if we sold the place it would just devalue the house so has to be done ,
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Date: 08.09.2014
From: rhona

Subject: Re: Hi Colin

That's the problem with older houses, Colin. I guess you will be wanting the roof sorted before the winter sets in, unless it can be repaired. We have a loose tile on ours that we must see to, we had a wasps nest in the loft and they were entering though the tile, I think it was them that caused it. It was horrible they were falling into the bathroom through my downer lights but the council got rid of them.

I don't know that rituximab is any worse than any of the other biologic treatments Colin, I was scared stiff before going onto it but it has helped me a lot, whereas Enbrel made me worse and it would maybe mean you could get off the steroids.

Take care and hope you are feeling better. x
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Date: 08.09.2014
From: marlene

Subject: Re: Hi Colin

Hi Colin, thanks for the info I will have a look. I hope that roof gets sorted for you soon. You are right it will show up in any survey.
Take care Colin once again than kyou X
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