Arimidex - Coping with the SE's
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When I complained to my MO about the joint pain and stiffness, she mentioned the Vitamin D study and said she would write me a scipt for it if I was low. I took the blood test but my D levels were in the high range of normal, so, alas, no help there.
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That is so strange that the clariton works for joint pain! I will start taking it tonight and see if it helps!
Also I know some people have given up gluten and are pain free, but I am not to the point where I am in that much pain to go gluten free.
Does anyone else find that they are more irritable on arimidex?? I am on 2 anti-depressants and still very irritable.
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Hello ladies
I have a gluten-free diet (with occasional lapses) on the whole because I found digesting wheat difficult.
After three weeks, I am having no problems with Arimidex apart from constipation for which I take Lactulose, a sugar syrup, from time to time.
Could the gluten-free diet be helping?
Good luck everyone
Alice
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Ive Been doing VIT D3 which is the one to take. You can only get low dosage tablets here in NZ which costs a ridiculous amount if you were to take say 5000IU. daily as mainitenance. The other option which is what Im doing is 50,000 IU tabs on script every 2 weeks. By the way what does the test cost in the US...that is the one for D3. Apparently there is confusion/lack of kknowledge about having the right test done. They will not fund me here to have it done because "it costs too much" and I can't seem to find out how much it costs.
That said, Ive been doing my D3 for longer than Arim, and I'd have to say it did not stop me from suffering severe joint pain at times. If I rmember correct, it was about 4 to 6 months after starting A that I started feeling 90. Overall Im very pleased to say that I reckon the joint pain are starting to back off or I don't seem to be jhaving the same amount of pain. Also Ive been able to increase my daily walking to about 40 mins a day and I don't seem to be having as muchg stiffness in my fingers.
I hope this gives other Arimidex ladies hope that this dreaded aching does abate in some of us. I darned near dropped kicked it, but now I wont be.
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Musical, the Vit.D level was part of the blood test my Oncologist did the first time we met. My level was 37 so on my own I have been increasing the amount I am taking. I have been to see her one more time and she did another complete blood count but I don't know if the Vit d was checked again. I did tell her that I had incresed the amount and she said " Good"! Thank goodness I am pro-active! LOL
Actually I am going to call her office tomorrow and have them send me a copy of these results.
Mena
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Mena, did she say how much it costs? BTW I think Ive had 3 D3 tests done and they reckon Im in what is considered the "normal range", which others (such as the Vitamen D Council website) who study the whole D3 thing say the accepted ideal levels are woefully underestimated. I definitely believe we've all been sold a pup as far as being told to stay out of the sun....and that includes sunscreen with all its toxins. The trick is to not get burned but get out in that sun. No sunscreen. Amazingly when you get your D3 from the sun, you can never overdose on it. When you've had 10,000IU (from memory) your body does it's own self regulation.
Our tests here in NZ are measured in nm(nanomols) and I think UK is too,not sure...but US is something like nanograms
Edited to correct the word above in bold
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Musical, I really don't know the cost individually for each blood test performed. The lab billed the insurance $281.00 for the complete blood work they did!
Mena
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I think every lab charges different rates
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I found out that the Vit D tests can be different too so you have to ask for your actual number and ask what the normal range is. For example, my test had a normal range of 30-70. So if I was a 31, I'd be "normal". I was originally below 30, then after 3 months of taking 4000IU daily, I was up to 62. A much better "normal"!
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OK ladies here are some excerpts you might find helpful when I looked into VIT D3. I think I've posted this info before ages ago but it's worth posting again . I *think* (99%sure) I got this off Vitamen D Council. website Also we must take into account as always other factors like, it's not generally a case of one isolated thing we are deficient in, then taking that supplement to right it and all will be fixed...for instance, your absorption of VIT D3 is supposed to be dependant on your magnesium levels.
25-hydroxyvitamin D blood test (25(OH)D blood test)
Test that measures the amount of calcidiol circulating in the blood. The most accurate measure of the amount of vitamin D in the body. See blood calcidiol level.
Blood level or blood calcidiol level
The amount of 25(OH)D (calcidiol) circulating in the blood. For proper health, blood calcidiol levels should begin at 125 nmol/L (50 ng/mL), with optimal ranges from 125–200 nmol/L (50–80 ng/mL). When someone refers to vitamin D blood level, they are referring to blood calcidiol level. see 25-hydroxyvitamin D test.
Calcidiol
25(OH)D (25-hydroxyvitamin D). A prehormone in your blood that is produced in the liver from the metabolism of vitamin D3 cholecalciferol. When testing for vitamin D deficiency, this is the only form that should be tested for.
Calcitriol
1,25(OH)2D3 (1,25-dihydroxyvitamin D). Referred to as activated vitamin D, calcitriol is the most potent steroid hormone in the human body and has powerful anti-cancer properties. Calcitriol is made from calcidiol in the kidneys and other tissues and is also produced synthetically as an analogue. Calcitriol levels should never be used to determine if you are deficient in vitamin D.
Cholecalciferol
Vitamin D3. Cholecalciferol is the naturally occurring form of vitamin D. It is a prehormone that is synthesized naturally in the skin by ultraviolet B irradiation of 7-dehydrocholesterol. Cholecalciferol is real vitamin D. All other compounds are either metabolic products or chemical modifications.
Vitamin D
A prohormone that behaves similar to a steroid in that it binds to a receptor and has a regulatory effect on gene expression. Vitamin D plays an important role in: the maintenance of several organ systems, bone formation and mineralization, and the control of calcium and phosphorus metabolism. Vitamin D also performs immunosuppressive and anti-tumor functions and is vital for the maintenance of the blood/brain barrier. The term vitamin D also refers to vitamin D metabolites and synthetically-derived vitamin D analogues.
Different forms of vitamin
Vitamin D1: molecular compound of ergocalciferol and lumisterol (1:1 ratio).
Vitamin D2: ergocalciferol or calciferol (made from ergosterol).
Vitamin D3: cholecalciferol (made from 7-dehydrocholesterol). Vitamin D3 is real vitamin D. All other compounds are either metabolic products or chemical modifications.
Vitamin D4: dihydrotachysterol 22,23-dihydroergocalciferol.
Vitamin D5: sitocalciferol (made from 7-dehydrositosterol).0 -
Thanks for the good information on the vitamin D. I did give up gluten for a couple of weeks probably 6 months or so ago. I still had the severe joint pain. I tried to be very careful but maybe I ate something that the gluten was hidden in. I have been looking into food elimination to see how it works and think I may try that and see if I can find what foods I may have an intolerance to and maybe the elimination of that food/foods will help. The last time I was at my cancer surgeon's office her NP told me that sometimes the side effects will lessen after you have been on Arimidex for 6 months. Since I had already been on it for over a year, she said they probably would not lessen and so the search for relief continues...
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cowgal, (BTW offtopic, I love quarter horses)..... hugs, sorry youre dealing with this. Mmmm I don't know that I'd believe your NP about those timeframes. We are all so different and I think it really does affect us individually more so, depending on our mix of other issues we face healthwise. I hope you do get relief. Im not totally out of the woods yet but theres definitely been an improvement. Ive been on Arimidex about a year or just over. I really should check my notes...I'm just remembering someone saying the heat (we're in midsummer) would be more likely to lessen the aching rather than increasing it. Maybe thats happening to me.... come winter I'll see.
I dont agree with everything in this blog below, but nevertheless it's helpful to see recommended levels and how VIT D3 is measured. The article is mid 2010.
http://paleozonenutrition.com/2010/07/28/vitamin-d-ideal-levels-and-how-to-know-if-you-are-taking-the-right-amount/What do my blood tests mean?
The vitamin D test is a measurement of 25 OH Vitamin D, also called 25 hydroxy vitamin D, 25(OH)D or Calcidiol. It measures the amount of vitamin D circulating in the blood stream.
New Zealand / European measurements are in nmol/L (nanomoles per litre). US measurements are in ng/ml (nanograms per milliliter)
Many websites with information about vitamin D use ng/ml.Here is a summary of ideal Vitamin D levels in both ng/ml and nmol/L
The following 25(OH)D blood serum levels are now generally accepted – NZ measurements are highlighted:
Blood levels below 20 ng/ml or 50 nMol/L constitute a serious deficiency
Blood levels above 32 ng/ml or 80 nMol/L is the lowest acceptable level. Below this is now considered deficient.Blood levels of 40 ng/ml or 100 nMol/L are now considered the lowest optimum level
Blood levels of 60 ng/ml or 150 nMol/L are now considered an optimum level
Blood levels of 80 ng/ml or 200 nMol/L are now considered a safe upper limitEDITED to get workable link
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Thank you Musical. I was told mine was normal (at 44). Read on here that higher levels were being promoted by oncs so began taking supplements. Now 46.
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Wren, I'll have to dig into my files and see what my initial reading was. I know it was woefully deficient according to the figures above, but they deemed me as as only a little deficient. As such, I've been battling "the system" to get my tests funded.... Incidentally the blog I referred to above said the VIT D3 test in NZ was 50$. Don't start me on how much it costs to pander to those who end up in cells BY CHOICE, compliments of the free taxi service (NZ police) with 5 star treatment.... and they quibble about a test that thats needful because of something I never asked for ...rant over.
Another interesting thing to be taken into account is our latitude. Because we are fairly low latitude, our VIT D3 levels are harder to obtain midwinter.
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A year before I was diagnosed my D level was 12, I did start taking supplements, but just before I was diagnosed it was only 20, it increased slowly during treatment and after because I spent more time in the sun and upped my dosage, but it was still something like 32, then my FNP had me start taking 5000 units a day after about 9 months (and it was summer too) it was up to 72, probably about time to have it checked again. Oregon sunshine is a little wet and doesn't help us with the D much of the year.
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I was tested : Oct 2010 - Result 39 nmol/L ......... the report says "range of mild deficiency 25-50nmol/L" !!! yet the above excerpt says its a serious deficiency.
Jan 2011 -Result 101nmol/L........
May 2011- Result 93 nmol/L....
I know I was taking 1 tablet of 50,000IU D3 (cholercalciferol) 4 weekly then upped it to 1 every 2 weeks with GPs OK....over the winter....however I've been taking it through the summer as well because of LE and what not. I don't spend a lot of time in the sun.
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QUOTE EXCERPT FROM VITDCOUNCIL
Serum levels: upper limit and toxicity threshold
http://www.vitamindcouncil.org/about-vitamin-d/what-is-vitamin-d/vitamin-d-toxicity/
Upper limit for a substance is the amount up to which is considered safe and without risk of adverse effects in the majority of the population.
Toxicity threshold for a substance is the amount beyond which over-saturation occurs and symptoms of toxicity manifest.
These values for 25(OH)D are as follows:
- Toxicity threshold level - 200-250 ng/mL (500-750 nmol/L) 45678
- Upper limit - 100 ng/mL (250 nmol/L)
The large range between 25(OH)D’s upper limit and its threshold value implies a degree of safety at serum levels up to 100 ng/mL (250 nmol/L), since concentrations twice this amount have yet to ever be associated with toxicity. 4
Vitamin D deficiency: A global epidemic
http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-deficiency/
Published estimates and studies grossly underestimate the extent of the problem as a result of using an outdated 25(OH)D threshold (cut off point) of 30 ng/mL (75 nmol/L) for determining deficiency.
Recent evidence reveals beneficial effects of vitamin D at serum levels around 50 ng/mL (125 nmol/L) 232425 or higher - effects not seen at levels below 40 ng/mL (100 nmol/L), indicating a need for upward revision of the deficiency reference threshold.
Page last edited: 09 July 2012
UNQUOTE
Heres some interesting reading on the most important co-factor, Magnesium.
http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-cofactors/magnesium/
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Wow - Musical, thanks for all the info!
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I often think VIT D3 is such an important subject there should be the basic info like above, in a sticky in its own right for everybody to see easily. I have found, new comers come on to the boards and are wanting this same info time and time again, and I think it deserves it's own place up the top of the appropriate forum somewhere. Even though the agreed optimum levels may differ, there is one thing that IS pretty much agreed on.... that there is a VIT D3 deficiency right round the globe. ... There have been enough studies where this firmly leaves the land of subjectivity and is factual. I in no way see it as "alternative".
Anywayz I hope this helps those wanting to look into this most important of subjects, and it helps to remind me as well.
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First they tell you to avoid the sun and wear sunscreen all the time, even on cloudy days when you're inside near a window. Having had a basal cell on my face, I wore sunscreen on my face religiously. Then they discover that the sunscreen has ingredients that act like hormones in the body. Plus we're all low on Vit D. Now the safest sunscreen is the zinc oxide stuff that feels like cooking grease on my face. AND manages to get into my eyes and make them burn for hours. I haven't decided what I'm going to do about sunscreen. I'm willing to slather it on when going to the beach or hiking, but it's just too uncomfortable to wear daily when I'm mostly inside.
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Thats right Wren, a lot of smoke and mirrors and you don't know who to believe, and it's not only sunscreens that have "things" in them that act like hormones. I trust sunscreens as much as I trust a flat tyre. I had some old stuff that I was sure would be free of all the modern toxins they load our toiletries, makeup etc etc with and how wrong was I!!! It had every long toxin name you could think of ...OF COURSE in the most squashed up hard to read writing you could imagine, oh and you know, red writing on a brown background or something.... I'm not kidding when I say I had to use a little magnifying glass to read some of it even though I had glasses on. The fact is they DON'T WANT you to read it.
I am wary of zinc oxide, but I don't know enough about it ....yet.... When I do, I strongly suspect it will be as I thought. In the nanoparticle basket. Nanoparticles are so minutely small they can enter the pores of your skin. Heres why I think that. I use it as a preventative for the deadly "Facial Eczema" to drench my few sheep. It is essential to use in this case. When I mix it up I make sure I wear gloves. It is so messy to work with, often Vetenarian outlets wont open bags to get smaller amounts for smallblock owners. It goes everywhere and you cant even wipe it off stainless steel without using soap. It is SO FINE!
Obviously everyone has to make their choices, but what about (once you've had your max sun before burning) putting on something like a light white top. Of course white reflects the heat. Just a thought.
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The last I read re: VitD...we all need about 10 to 15 minutes of sunshine WITHOUT sunscreen. I also had basal cell on my face but I still go for a while in the sun without it. It's been years and so far, so good. I feel I really need the VitD and for me it's the best way to get it. I do take supplements tho.
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So many conflicting ideas on Vit D. My nurse friend said it is impossible to get enough Vit D from the sun at United States latitudes. On this topic, UCSF has great videos on Youtube and I watched a Nutritional Physiologist 45 minute lecture (yes, the whole thing) on Vit D. According to his research, one can take 2800 IUs a day without ever fearing toxicity while getting to a minimumally acceptable level. Most got above 50, no one got over 100. I'm a bit fuzzy on the numbers, but I do recall at this level, there are not dangers and it got most people to a good level.
I was 18 when dx with BC...got up to 32 (the lowest end of the range) after 6 months on a weekly megadose (Rx). I did not think this was acceptable, despite what my PCP said, so now I supplement with 3,000 IUs a day, in addition to the weekly megadose Rx of 50,000 IUs.
I probably asked this before, but in addition to memory issues, has anyone here experienced finger swelling while sleeping or walking since taking these hormone blockers? Someone suggested lympohdema, so I will be seeing my PT who specializes in this (out of town in a few weeks) to help me discern if this is what I'm dealing with or if it is just edema. I do believe edema affects about 5% of those us taking this drug and this did start about 2 months after taking. If anyone has had edema due to these drugs, has it ever resolved? I'm on my 6 month of this drug (exemestane). Thanks in advance.
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Heres another thought which I haven't cottoned onto til I read it yesterday...... so you maximize your intake, strip off as much as you can and expose to the sun. I tend to have a lot covered up. I'm thinking whats the point of that? Expose as much as possible in the midday sun but DONT get burnt.
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Kam yes it's hard when there is conflicting information. However, in our research, theres somethings that just shine out and youd have to say either this person is seriously deluded to say such a thing, or it is indeed true. Everyone has to make a choice on this. NOne of us want to be naive and believe everything we hear, but we want answers too.
That megadose of 50,000IU's can you verify if it's D2 or D3? Some time ago there was much discussion on a VITD thread, about D2 being pretty much useless. It must be D3. Next, I wasn't aware that 50,000IU's D3 was available in the US. Perhaps thats changed? Its available in NZ only on script.
Regarding the edema, right now I'm considering this very issue myself, but I think it is exacerbated by neurontin. You have no sig, so I dont know what your DX is but if youve had ANY lymph nodes out then it is strongly recommended on the LE forum here at BC Forums, that you need to know about LE. In short, you are at risk for the rest of your life of developing it. Prevention is definitely helpful with this most troublesome of conditions. There is much you can do. I hope it is not LE, but you are wise to be getting it seen to. All the best for that appt.
HTH's
Musical
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Had a 2 hour flight on Friday and totally forgot (been forgetting a lot on AI) to wear my compression sleeves. I fly for work and always wear my sleeves-this is the first time I forgot. Now I'm panicking and have been wearing my sleeves all weekend. My fingers are swollen, but can't really tell about my arms. Any suggestions or am I over thinking it? Thanks!
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Sorry, I can't help with the swelling, but I hope it will just resolve quickly. Speaking as someone who forgets things, next trip tie them them to your suitcase. Especially if you only use them for flying.
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Spunky - do your hands swell, other than just after flying without the sleeve? Mine swell when lying down and/or walking. Obviously, the fluid in my tissues is not moving back to my chest area (whether lymphatic or venous) as fast as it should in certain situations. I don't notice any arm swelling. I have it in both hands.
One node removed.
Musical - yep, it's D2 1.25mg (50,000 units). Maybe that's why I only got up to 32.
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Moonflwr912 good suggestion re the sleeves.
Spunky have you been measured? ...or had a baseline measurement on your arm?. LE is an insidious thing, where the swelling can be hard to detect. You guys with swelling please head over to LE forum coz there's some very knowledgeable ladies over there and they answer as quickly as they can especially if people have issues. Kira and Binney are amazingly supportive along with others.
Kam it sounds like you may have something else going on being in both hands, but I don't know. This is unlikely but possible.... Binney has only had one node, and she has LE on BOTH sides. She wasn't armed with the knowledge she would like to have been and as such has a real passion about this subject warning people to be aware. This is NOT to unduly scare people but to be forewarned is forearmed. Sometimes our poor ol brains have had about enough and just can't take anymore in.
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The first couple of months I only had some night sweats, very occasional hot flash and fatigue... foggy brain too. I went off Arimidex for 9 weeks while on a vacation that was strenuous and I needed to be able to sleep and focus to enjoy it and not hurt/kill myself. Anyway, came back from vacation and went back on AI. In addition to the previous SEs I then started to experience terribly aching feet, hands and hips. I keep most SEs controlled with supplements, good diet and acupuncture, but the aches wouldn't go away.
I tested positive for osteoporosis in November. I shuddered at using Reclast or any of the other meds pushed by the endocrinologist. I did start on Ostera by MetaGenics which was recommended by my Naturopath. Within 3-4 weeks NO MORE JOINT or FEET ACHES! I think it is the Ostera, my MO says sometimes these SEs just resolve themselves as our bodies get accustomed to the meds. Since she's always poo poo-ed my supplements and diet etc., I'm inclined to think it's just more sour milk on her part.
I still have some night sweats, though not too bad, an occasional hot flash, neither of which were ever really too bothersome. Fatique/sleep still are still problems. I spent 10-12 hours a night in bed to get 7-8 hours sleep--not uninterupted. I think I can live with the fatigue now that the aches as gone.
It might be worth trying Ostera for a month. It supposedly works on the infammation that aids the progression of osteoporosis. It is also going to be marketed soon by one of the pharmaceutical companies. Yeah, they tweek the molecular structure a bit and make millions marketing it as a new drug which you need a prescription for, though Ostera has been around for some time.
YMMV.
Nancy
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Nancy-where can Ostera be purchased?
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