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Winter chills again!/Pins and Needles

Yet again I have got the winter chills again. I have been on Glivec since 2003 with an undetectable PCR for almost 2 years, so what a success story. The only problems I get are the Glivec related ones. Yet again this winter I am freezing cold, piling on the layers with everybody else in the house saying "Its not cold". My temperature today is 36 degs C, when it is almost always 37degs. Has anybody ever documented this side effect. I know its not just me by reading the Forum.

Also in an unrelated vein. I have been having lots of spine, hip and bone pain with pins and needles in both legs and arms, possibly a lower disc problem (or 2). I know Glivec causes the bone pain in legs, but is it documented that it can cause pins and needles? Cramp is a real nuisance, so perhaps the pins and needles could be related to that. I am waiting for an MRI scan as X-rays have shown up nothing.

Thanks again in advance everybody for the help that always comes from this wonderful site.
To the "newbies" - stick with it and use this site to the max, I couldn't have managed without it.

Des

Hi Des
Yep I would turn the heating up to the max but the rest of the family don't want it that high! Have you tried using the wheat packs you can heat in the microwave? They can be very helpful particularly if you get specific cold patches. Mine are usually on hand or legs. The pads also help with cramps.

Pins and needles could be because of the disc problem, its worth having it checked out and I hope the MRI will give you a solution. I have disc problems and they showed up on MRI not on x-ray.

ATB
Pennie

Hi Des and Pennie - I thought I was the only one who was freezing cold! I had a three-monthly check-up today and told my blood doc in passing about this apparently unrecorded and peculiar side effect. He seemed singularly uninterested.

I shuffle around the house in two cardies and thermal vest and have invested in an electric blanket which usually stays on all night during the winter. I've been on Glivec for a year, but didn't have the chills last winter. However, I find that side effects come and go in 'waves' and take some time to develop.

When I go out for lunch with my pals, they always keep a seat by the radiator for me because they're used to me sitting there hunched up with my coat sleeves pulled down over my hands.

Another side effect that they don't tell you about is soft, wavy hair. Mine was thick and quite coarse before Glivec - now it's rippling down towards my shoulders and I can't bear to have it cut. Hurray! A great side effect!! And has anyone noticed that they've gone off wine drinking? At least I've become a cheap 'round'!

Yours shiveringly, teetotally, hair-ripplingly, cramped, etc etc,

Diana

hi Diana,
i was always cold when i was taking Glivec, you describe it very well- and yes my hair did change in a similar way to yours. i also lost my taste for wine, which was a bonus as this meant i did not put too much stress on my liver (Glivec is synthesized by the liver)

good to hear from you and i hope you continue to do well.
Sandy ;o)

hi
When I was on glivec I certainly felt the cold, it was right inside me and as a person who was generally hot I am certain that this is a glivec side effect. Interestingly post transplant this is also a common problem. I also had bad pins and needles whilst on glivec, definitely related to the glivec although obviously it can be related to disc problems amongst other things. I had the pins and needles mostly in my hands and feet although several times it went all over my body.

I lost the taste for red wine whilst I was on glivec...............I did mind that!

regards

Susan

day+91 post mini transplant

Hi everybody
just about right,constantly cold, even tho' on Dasatinib now, fingers and feet like blocks of ice, same problems, poor Carole walking around in te shirts and the like, me in a fur coat !!!! par or the course, but better than the alternative. Incidentally, PCR now at 1.00.
Have fun and keep smiling
Keith

Hi Diana

Good to hear from you, I wondered how you were! Yes I too am freezing cold all the time - well, apart from those very hot little moments that seem to creep up upon ladies of a certain age!!! I didnt feel like this last year either.....I find that the heating in on all the time, I've never left it on all night before but now it is, I have a hot water bottle as well AND a share in a 12 tog duvet!!!!

Soft wavy hair?? Lucky girl. Not a sign of that!! In fact I've gone the other way - my hairdresser kindly calls it curly but I would say coarse and wiry is a much more accurate description - along with the very fetching grey.

And lastly alcohol - no I still enjoy a glass of the pop. But everything in moderation and my haematologist has told me my liver enzymes are fine....

Take care, Janet

hi Keith,
congratulations of reaching 1.00%- you must be really hopeful that Sprycel with continue to reduce your levels of bcr/abl even further! i bet your clinical notes are being passed around the world as we speak ;o)
best to Carol,
Sandy ;o)

Hi Des
Read your post with interest, I am another who suffers from the cold, particularly hands and feet. Like you, there am I shivering and complaining of the cold and others are saying that it’s just right, or too hot. I used to think it was a conspiracy. Some days I go out and it feels as if I’ve got no flesh on my bones, the wind seems to blow right through me, even though I am wrapped up “warm”. I am not altogether certain that it is all to do with Imatinib, I used to be a real out door person, out in all weathers, however cold, no problem, but looking back, leading up to dx, I just could not keep warm. Could it be part of cml, could it be due to low blood levels, a combination? I don’t know.
I have never bothered to monitor my temperature, but since your post I have, and I seem to be a degree or so below norm. At this moment I am 35.1C. I also find that I cannot tolerate the heat either; I’ve always said that my thermostat is on the blink, any exertion on a hot summer day leaves me drenched in sweat and “wrung out” for a day or so. Any mention of it in the past and the reply is “You are getting older,” I know it’s not just that, but it’s the standard reply. We could do with a constant temp of 70 F, now that would suit me. I will have to keep monitoring my temp and see what happens when I get the sweats. It seems that most cml’ers get sweats at night, mine always happen during the day. It causes quite a laugh among ladies of a certain age when they see me flush and perspire and have to take off coat or cardigan.
Kind regards,
Les.

Hi Des,
just a quick follow up,a couple of months ago we bought a memory foam topper for our bed mattress,I havent slept as warm for years, it's wonderful, much warmer than the mattress on its own. Might have to cut it in half though as its far too hot for the Wife. Thought it might help you to keep a bit warmer.
Warm wishes,
Les.

Des I was very interested to hear about your disc problems. I have been on Glivec for the past eight years and have had niggling back problems for the past five. However last august I had a particularly severe attack, i am receiving physio through work but every time we think it has settled down again it goes.
Now I have been referred to a specialist for mri and further testing but they suspect a slipped disc. However I too wonder if the glivec is having some effect on the ligaments around my disc or the bones - I have always suffered from joint and bone aches. My consultant just said that it was bad luck and I just have a back problem as well as the leukaemia - which may well be true. However, I would be interested to hear if any others have had similar problems to see if there is a connection.
PS I also get winter chills and sleep in a heated house with a fleece and wooly socks on!! At 41 it's so not sexy :-(
Lorraine

Hello Diana

I am sitting here replying to you with full central heating on and still freezing inside my fleece. Up until CML and Glivec I was a real warm person.
The cold seems to be right inside my bones and my fingers and toes are the coldest with accompaying pins and needles.
However.... I did notice when the weather gets really hot, I get roasted so I think my internal thermometer is on the blink.
It's only a little moan though because I am getting a good response to Glivec.

Jeannette (that's my name, the name above is my husbands name who logged on and we dont know how to alter the 'your name' bit)

Maureen

Glad I am not the only one,I am so cold right inside me heating high two jumpers, today added my thermal vest and yes still feeling cold.other wise all my counts are fine so a small price to pay.

Maureen