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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi ive been experiencing very cold hands , feet and nose for a few months now , i mentioned it to the consultant in clinic last month and he just made a note of it in my file , i have also been having migraines , i can not see anything as i have very bad blurred vision ,they seem to go after half an hour but i then have to walk round with dark sun glasses on for the rest of the day even in doors !, i asked for my thyroid to be checked as i have put nearly 2 stone on in the last 6 months but when i rang the hospital the nurse said thyroid was ok , i am going to ring next week and as what was the thyroid result as i didn't ask  and would like to know ,i just dont feel right at the moment and my memory is bad too , im due for a second go of Rituximab in 2 weeks this has helped my Ra and Lupus but when i think of it all these problems have started after i had my first go of Rituximab back in November  , does any one else suffer with cold extremities ? Sophie x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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raynaunds is a part off auto iumme but you go white with cold . Over breathing and panicing can also make you very cold .very easy to over breath with out knowing but keep up the habit then it can affcet ( Cured by beathing excises by a phyiso who deals with chest ) Under ative thyioed will also make to cold and hard to warm up .But very slow dry skin and sometimes voice slurrs . Put on a vest long socks long sleves and see how you go . think there are a few things that make your feet and hands cold all the time it may have too rear its ugly head before treatment Is your lupus helping it along ????? Christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Sophie Sorry to hear of all your extra worries ... as if RA and Lupus isn't enough to contend with! I don't have these additional problems and nor am I on rituximab but it is a little disconcerting that the 'extras' appear to have started after the first rituximab shot. As Chrissie suggests, Raynauds (cold extremities phenomena) is a possibility and is another member of the auto-immune family. The migraine could be totally separate and I would think it may need a GP visit; bit drastic having to walk round in dark glasses  ... but I do understand. The 'fog', lack of concentration and poor memory, I sympathise with and have days myself when I'm almost impossible to hold a conversation with as I forget things so quickly; in one ear and out the other is so apt. Keep hoping that will improve! In view of the impending second Rituximab I think it might be appropriate to get some medical input on these problems before going ahead. As we all know, these drugs can cause all sorts of problems and affect us all differently. Sorry I've no advice to offer really other than to suggest getting it all checked out. Hope things improve for you very soon Sophie. Keep us posted  Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hello Sophie Cold feet hands,nose,umm do tell them again. good diea check thryoid. my hands,feet,nose go extremly cold most of time well in fact all day. white with blocthes pacthes,could it be lupus circulation/ra issue id ask them to take look. as for rix i wouldnt know sue others may. i know raymaunds sydnrome does often come with lupus,or ra for some. i sit on my hands keep emm warm and wear blankets round feet all time. take care hugs. 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: 2,127
Location: Thornton Cleveleys
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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you would know if it was raynaunds rather then cold hands i think as its differant . more then cold hands and feet as blood is restited and you can feel it in secs of going white as there is a hurtie feeling . might be drugs !!!!!side effcets over breathing can make tou very cold hpyerventerlating . christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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 #knew someone would pick up on my w2as of keeping hands feet warm, all i know is rheumy is keeping eye on me for this raymaunds thingy,as goes hand in hand with fibro,luous. they ache so cold then they burn stinging sensation weird. we will finda solution. think mines circualtion related. 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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hello
I had a lot of very serious problems on the rtx, cold nose is still an issue here but not had cold hands and feet- the inflammation in the joints is red hot there...
I would look at the drug manufacturers website but also here
http://www.mayoclinic.co...9/DSECTION=side-effects
Because of the nature of the drug, the effects can suddenly appear or gradually get worse over 2 yrs since having the drug, you need to go the GP and ask to be checked for reynalds, vasculitis and lupus.
I do know that rtx can give a lupus like syndrome as one of the effects.
having said all this some people do very well indeed on rtx with no ill effects, and have a new active life.
Jenni xxhow to be a velvet bulldoser
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 1,035
Location: in a house
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too keep warm i wear sheep skin boots and slippers magic gloves as can get 2 pairs on long socks vest 2 jumpers 2 pairs socks in winter i take Nifeaepine to keep warm in winter ( spelt wrong ) i think you would know if it was raynaunds as it tends to start in one or 2 fingers then the tips off all fingers then gos up the fingers and theres a feeling of it starting . move around and get hovver out that warms me up . thing like warm drinks do nothing for me .And i have to have heat on a nocth more . and still wear same clothes i am very cold in other people houses unless they are heat freaks . And a hot water bottle in the bed .Sometimes 2 christine i would guess something brewing or drug related The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Thank you ladies for your replies, Christine i do a lot of the things you wrote already but i have made note of a few others thank you, Mel that made me laugh ! , Jenni that was a good link thank you i seem to have a lot of the side effects ,maybe this is how its going to be from now on , its a small price to pay for not being in that incredible pain every day so Rituximab is definitely working, just hope the swelling goes down in my knuckles after the next course, my GP is crap so i usually just ring the hospital and speak to someone there , all i can say is thank god for ugg boots and gloves Lol only wish i could get a nose warmer (2 days before Rituximab treatment i am in hospital getting chest x ray and bloods done i will see a doctor then so i will mention all my problems to him ) Sophie x
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Rank: Advanced Member
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Joined: 12/3/2009
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just too say i have a scleroderma over lap why i have raynaunds but please don,t go and get that . Raynaunds something being with p end with m . looking at hands in a r.a group i can tell whos cold and whos not .Theres a few christine The chocolate eating housewife ...The washer woman .....naughty lady
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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glad made you laugh lol,hubby runs from me as hands so cold freezing,mind you hes no better with cmt his feet,hands often even colder than mine. when i have ra flare he does oposite comes loking for me to hold his hands to wrm them up,no way im doing same when comes to feet lol melly cuddly cats make my world seem so much more fun
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Rank: Newbie
Groups: Registered
Joined: 12/7/2009
Posts: 9
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Hi Sophie,
I had my second course of Rituximab in March, and come to think of it I do get a cold nose also red blotches around my nose. Back when the weather was cold my fingers went white a couple of times. I did'nt really associate it till recently with the Rituximab or RA, but I'm going to mention it when I go for my check in July.
Doreen W
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Rank: Advanced Member  Groups: Registered
Joined: 3/8/2010 Posts: 914
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Hi Sophie, I have felt the cold since being diagnosed almost 3 years ago. My feet are like blocks of ice, my husband complains when I warm them on him he doesn't mind really. I also feel the cold in my back, I wear fleece waistcoats with my tops which makes a difference. I always feel if your back is warm it makes all the difference. Never mind the summer is coming, hope it's a good one. I actually got sun burnt yesterday, didn't realise it was that warm when I was out planting flowers. take care Lorna x
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Rank: Advanced Member
Groups: Registered
Joined: 5/19/2010
Posts: 384
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Hi Sophie
I was only diagnosed 3 weeks ago with RA but one of my symptons was extremely cold hands it felt as if I had frostbite they were so painful. I have invested in a pair of Thermoskin Arthritis Gloves and they really work well. I wore them to bed the other night because my hands were so cold and woke in the night and had to take them off as my hands were so warm. I wear them around the house for a few hours when I feel the need. Anne
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Hi Doreen, Lorna and Annie thanks for your replies , i definitely have seen a difference with me not being able to tolerate the cold Doreen, and i now think it could be a side effect to the Rituximab, Lorna i wear socks in bed to warm my feet this really helps them, Annie i am going to get some of those gloves they sound really good !  Sophie x
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Rank: Advanced Member  Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Sophie,
I'm also on rtx and my hands especially are always cold. My joints have been great since I started on it but I just haven't felt well since either. Sometimes I wonder if the benefits are enough to justify the side-effects but choices are limited when all other drugs fail.
Hope you get some answers re the weight gain and migraines.
Joanna
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 561
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Thanks Joanna , my Rituximab treatment has now been put back as i have been the doctors this morning and have been dx with a sinus infection got some antibiotics and have to ring hospital when ive finished them to arrange a new date , this is a nuisance as i had arranged for my son to be picked up from school on the days i was in hospital but never mind  , when did you start Rituximab ? and have you tried any other ant tnfs , this is the first one ive tried but just wish i could of been put on it years ago as it might have saved my joints from damage . Sophie x
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Rank: Advanced Member Groups: Registered
Joined: 1/7/2010 Posts: 441 Location: Bristol
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Hi Sophie,
I think I've tried nearly every combination of drugs going since I was diagnosed in 2003 and was on Humira then Infliximab before the Rituximab. Luckily my joint damage is minimal but I've got a lot of inflammation that has spread to other organs.
I'm sorry you're having to reschedule your infusions ... especially when you've already arranged lifts for the kids. That's one of the things that gets me most stressed ... fitting the numerous doctors' appointments around school home times and drop offs.
Sorry about the sinus infection too. At least the sunshine we've got now should help clear up the sinuses.
Hope it all goes well.
Joanna
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Sophie,
Sorry to hear of your sinus infection and having to reschedule the rituximab, such a shame when you have made all the arrangements.
Hope you feel better soon.
Love, Doreen xx
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