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Kenno26
#1 Posted : Friday, September 27, 2013 11:04:24 PM Quote
Rank: Newbie

Groups: Registered

Joined: 9/27/2013
Posts: 4
Hello everyone i have just joined. My mum has severe RA and is currently struggling to get the disease under control. She was on enbrel for 3 year and it worked great then she started getting viral infections/cellulitis then the virus Cmv. She had to come off enbrel to let this get out her system and when she went back on it never really worked.
She has started getting high temps but no pain (so different from her flares) almost constantly.... Rheims tested for tb/lymphoma etc and nothing came back but she feels constantly dreadful. Rheumy said not normal but since nothing showing up it must be inflammation related... She was put on cimzia but had a reaction to it and had to come off.... She is currently medication free (apart from methotrexate which doesn't really help) waiting to start on humira.

She keeps getting temps of around 39.6 and feels awful. Sometimes with no pain...although she is now also having terrible flares which leave her unable to move etc....

Has anyone else experienced this severity/these constant temps (out with flares)?? We really don't know what to do......

Thanks
Lisa

Ps she was diagnosed in 2005 so not newly diagnosed
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annamaria
#2 Posted : Saturday, September 28, 2013 11:33:53 AM Quote
Rank: Advanced Member

Groups: Registered

Joined: 12/3/2009
Posts: 154
Hi Lisa
Really sorry to hear that your Mum is feeling so poorly. It is lovely that you care and are posting on her behalf.

I am not medically qualified but have some experience of infection due to biologics. With the history of infection, it sounds as if there could still be some kind of infection still hanging around maybe due to the immunosuppression, which could account for the temperatures. Does she have any replacement joints? I had hidden infection originating from one of mine. Once it was removed and following intravenous antibiotics the infection cleared.

Don't give up - maybe a referral to someone in pathology (bacteriologist?) could help investigate more? Your Mum may of course already be going down this route. With viruses it can be difficult to identify the bugs.

Meanwhile paracetamol can help lower temperatures, but I am sure with severe RA your Mum has a lot of drugs prescribed already. The bad flares won't help and I hope her team can get her some help soon - I assume she has some form of steroids for relief?

I wish you both well and do hope your Mum can get some more help soon.

Best wishes
Liz
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Paul Barrett
#3 Posted : Saturday, September 28, 2013 4:10:11 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/24/2013
Posts: 703
Location: Hexham
There are 2 things you need to bear in mind when considering 'temperature'

1. Our normal temperature varies during the day
2. We each have a different 'normal' temp

You might want to try running a temperature diary for a while, so that you can get a handle on what is normal. It would also be darn good evidence to show to your GP / specialists because they will appreciate hard evidence.

If you want to be flash. I have an Excel spreadsheet that will do the job for you and will give you a nice graph too. You would need to send me your eMail address and since private messages aren't allowed on this forum (note to moderators - Why not?) you will have to post it here for all to see.
Paul Barrett

Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)

Enthesitis (2012)
Ulcerative Colitis (1990)
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Kenno26
#4 Posted : Sunday, September 29, 2013 11:07:29 PM Quote
Rank: Newbie

Groups: Registered

Joined: 9/27/2013
Posts: 4
Thanks for the replies. They took her off steroids as said it may make temps worse but then said they didn't know what the temps were caused by :(

I will suggest a bacteriologist to her consultant.....

It's weird as they have given her MRI scans etc and say nothing there..... But there must be as they also say the temps this high are not normal for RA....... It's very difficult to watch her so unwell and in pain and have no medicine or answer:(
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suzanne_p
#5 Posted : Monday, September 30, 2013 3:18:27 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Lisa,

just wanted to say sorry to hear how much of a struggle your Mum has at the moment, it must be very difficult for you to see.

do come back and let us know how things are.

Suzanne

P.S. to Paul : there is a message in the closed forum above where we post about why Private Messaging was stopped.
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Paula-C
#6 Posted : Monday, September 30, 2013 3:18:39 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 838
Location: Nottinghamshire
Hello

I just want to say hello and what a wonderful thing for you to do to care enough about your mum to come on here and ask questions for her. I do hope she gets humira soon and it works for her.

You've already had some good advice and I do think that keeping a diary of her temperatures is a good idea. I am on Enbrel and doing very well at the moment and at my last assessment I was asked if I have night sweats. I told the nurse that I do, I always say I do the hokey cokey at night because I am in out, in out the bed covers all night long.

Message to Paul

We use to have another members forum and when this one was first introduced we had the facility to PM people. Sadly it was abused by someone/people and nasty messages were sent, so NRAS took away our ability to PM members. Much like life really, the minority spoil it for the majority.

Paula x

Edit I've just found this link about PM's
http://www.nras.org.uk/m...t.aspx?g=posts&t=624
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