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Brooke
06-08-2010, 06:37 AM
I do not take a vitamin and I bet I should be? Any good ones out there for women that anyone recommends?
For medications right now I am currently on 15 mg of prednisone, bactrim once a day, 15 mg zoloft, and my symbicort inhaler.
I have a bump on the top of my right calf about mid way down just to the right of my shin bone. It is from falling down 3 steps over a month ago and it has not healed. It does not hurt at all though. I have not had my doctor look at it because it hasn't bothered me.
How long before prednisone starts weakening your bones? I have been on prednisone since October 2009.

Thanks my fellow Weggies :)

elephant
06-08-2010, 10:54 AM
My bones went bad less than 6 months. Everyone is different too, so I was not one of the lucky ones. I take Vitamin D and calcium everyday. I eat a wide variety of food and my body does not like multivitamins actually makes me sick to my stomach.

DEE
06-08-2010, 03:22 PM
hi brooke i also take Vitamin D and calcium daily
had a bone scan jan 10 and im due to have another about end of july time
ive been on chemo a year and various levels of preds for the same time due to go as see wg consult abot meds and were we are going with treatment on thursday
busy week ent onsult today :)
get someone to check leg !!
DEE x

Barbara1966
06-08-2010, 08:22 PM
Hi Brooke,
For last couple months I take multivitamin WOMEN'S ULTRA MEGA from GNS store (just one worning you pee will turn green, the first time when I went to the bathroom and knottiest green I freak-out and call the doctor and the store I have a blood work done and they explained to me it is OK)

Good luck
Barb

JanW
06-08-2010, 10:47 PM
I take a multi, calcium and Vit D every day in addition to my folic acid (I'm on mtx). I was on inhaled steroids for five years and my bones went REALLY bad so I think everyone is different and like elephant says, I'm just one of the unlucky ones.

Sangye
06-09-2010, 01:13 AM
This is a huge topic and nutrition is never one-size-fits-all. But I'll make a couple general comments.

First, everyone--Wegs or not-- needs to be on a quality multivitamin. You cannot possibly get the nutrients you need from diet alone. You could before we changed our food and our soil but it isn't true any longer. Even organic food is not enough anymore. Our drugs and the disease make us far more nutritionally deficient than "healthy" people.

There isn't a single OTC multivitamin I would put in my body. Health food store brands are awful and famous brand ones (eg Centrum) are horrific. I only use brands that are available through health care professionals-- chiropractors, naturopaths, etc.... Each company has numerous multivitamins because of the high variability in need. A multivitamin is just the start. At a minimum we need solid antioxidants, essential fatty acids, calcium/magnesium, and vitamin D-- all derived from excellent sources. There's no multivitamin in the world that will supply all of those at adequate levels.

While you're not going to kill yourself trying to design your own supplement program, you actually can harm yourself. You can create deficiency syndromes that mimic Wegs or other conditions forcing your docs to order lots of tests and procedures. For example, messing up the B vitamin balance can cause arrythmias, tingling and numbness, etc.... At worst you'll hurt yourself, and at best you'll waste a lot of money and not get results. Many people buy supplements that are extremely high in nutrients-- 1,000% of this, 8500% of that. With nutrition, more is not necessarily better. Quality, not quantity is what matters.

I'm trained in advanced clinical nutrition and even I consult with my holistic docs about my supplements. Please don't go it alone.

pberggren1
06-09-2010, 04:55 AM
So what you are saying, Sangye, is to go and see a chiropracter or naturopath to get our supplements?

elephant
06-09-2010, 07:10 AM
Is there a brand called Sunrise? And is that a good product?

Sangye
06-09-2010, 07:42 AM
So what you are saying, Sangye, is to go and see a chiropracter or naturopath to get our supplements?
Yes. Just as you would see a medical doctor for advice about drugs, you should see a holistic doctor for advice about supplements. Many people think they can read about supplements in magazines or popular books and know how to use them. But to use supplements properly, one should have advanced training in the clinical sciences (eg. biochemistry, physiology, anatomy, neurology, lab diagnosis, pathology) as well as solid training in evaluation and use of supplements.

Holistic physicians are also trained in the evaluation of blood work to assess nutritional needs. (I don't mean testing for a particular vitamin level in the blood, though that may be necessary) For example, low serum CO2 indicates a problem with the body's generation of energy. That could be due to a deficiency of B vitamins, certain enzymes, magnesium, etc.... Unless it's way out of range, MDs won't do anything about it. But a "low-normal" CO2 can leave you so weak you can barely get out of bed.

When I consult my holistic docs about supplements, the first thing they ask is to see a copy of my most recent lab work, which gives them a great deal of background info. Then they ask about my diet, supplements, medical issues (including drug side effects)., exposure to toxins, and past history of all these things They also do a thorough physical exam that includes much more than a medical physical. Combining all this info, they then recommend supplements.

pberggren1
06-09-2010, 07:50 AM
Thank you Sangye. I think there is a naturopath is my city. I will seek her out. I may look into other ones as well. What do you think?

Sangye
06-09-2010, 07:54 AM
I love naturopathy. I had two excellent ones in Arizona and miss them tremendously. They can make such a difference for you.

pberggren1
06-09-2010, 08:42 AM
Thanks for your reassurance Sangye.

Brooke
06-10-2010, 12:45 AM
Thanks for all of the info Sangye.

Col 23
06-10-2010, 01:29 AM
Thanks for the that, might look into that myself, my Bs are low.
cheers Col 23

pberggren1
06-10-2010, 08:06 AM
Sangye, can you recommend any good brands that a naturopath might carry?

Sangye
06-10-2010, 10:23 AM
Trust your naturopath. :)

Col 23
06-11-2010, 06:13 AM
As Sangye advised, trust you doc and naturopath. I recall on the leaflet of Methotrexate and some others not to take certain things, the doc also advising that some naturopathic ingredients can interfere with our medications.
cheers to a good day for all
Col 23

Sangye
06-11-2010, 06:19 AM
LOL-- people often say "naturopathic' when they mean "natural." Naturopaths are doctors trained in naturopathy/ naturopathic medicine. So you definitely don't want to take any naturopathic ingredients--that'd be cannibalism! :D

(And while I'm at it, people often say "homeopathic" when they mean "holistic." Homeopathy is a specific type of holistic treatment.)

Col 23
06-11-2010, 06:38 AM
LOL I mean natural. It is 4 am in the morning. Thanks Sangye. Hope your feeling okay with tapering
cheers Col 23

Sangye
06-11-2010, 06:43 AM
I'm amazed you can even type at 4 am! What are you doing up so early (or so late)?

Col 23
06-11-2010, 06:53 AM
I wish it was due to partying but unfortunately no.
cheers Col 23

pberggren1
06-11-2010, 07:27 AM
Did someone say party?

Col 23
06-11-2010, 07:33 AM
I wish but its only in my dreams.

elephant
06-11-2010, 07:39 AM
Col, when I was on prednisone anything over 10 mg I would be up at night. I hardly slept, it was so annoying, I felt like I should get a job being a night gaurd....least I get paid! :0

Col 23
06-11-2010, 07:43 AM
My sleep patterns are all over the place.
Col 23

pberggren1
06-11-2010, 08:49 AM
My sleep is all over the place too. I can sleep for 12 to 18 hours, then be awake for 36 to 60 hours, then only sleep for 6 hours, then be awake for 18 hours, then sleep for 10 hours.....You get the picture. Anyway it is very exhausting.

Sangye
06-11-2010, 09:20 AM
Phil, how can you be awake for 60 hours?

pberggren1
06-11-2010, 12:17 PM
It is very difficult.

MCC
06-11-2010, 12:29 PM
.............

Col 23
06-11-2010, 01:20 PM
I know when I was on 80mg of Pred Iwent for days without sleeping. Are you on high dose of Pred Phil or some other medication that affects.
Col 23

pberggren1
06-11-2010, 03:21 PM
I am on 10mg of Pred.

jola57
06-11-2010, 05:12 PM
Oh that is good Phil. Just take it nice and slow now. How are your sinuses holding up?

elephant
06-11-2010, 09:04 PM
Phil how is your thyroid? Is your heart rate high?

pberggren1
06-12-2010, 08:33 AM
I think thyroid is OK. My heart rate is usually in the 60's or 70's.

elephant
06-12-2010, 12:55 PM
Your hear rate sounds great. I wonder if the medicines are causing to stay up late. Or mabey the prednisone?

pberggren1
06-12-2010, 04:40 PM
Who knows? All I know is that I am generally tired and worn out the last few months doing nothing.

elephant
06-12-2010, 10:27 PM
I think Sangye was saying when her wegeners is active that she has insomnia. Some antibiotic can cause insomnia too. The Avelox can keep you up at night. Hope your checking in with another doctor about his drug. The most I have seen someone on this is a week. Some doctors put patient on Avelox for five days and then switch them to another antibiotic because it is so powerful!

coffeelover
06-13-2010, 09:17 AM
sorry phil that you are feeling so tired. I know that I have extreme energy and when I abuse my good feeling times, I suffer for quite a while after. Is it possible that you overdid it a bit?

I would like to ask a question about the vitamins. I am lucky to have a rhuematologist who actually requests that I stop at a compounding pharmacy and pick up specific vitamins. I take a multi vitamin "for her", Vitamin D with Magnesium, Ortho biotic ( a probiotic), fish oil and the folic acid that I have been on since my diagnosis. I use a sesame/rose geranim solution (that was prescribed by my Mayo Clinic ENT who specializes in WG) in my nose every day to help prevent the drying out of the nasal cavity.

I recently started the vitamin D/magnesium and have been feeling sluggish and in more pain than I have been. Do you think the change/addition in this could be counter acting with other meds such as the pred, MXT etc?
I also realize that our rainy/stormy weather has been rolling through and I have always been somewhat affected by these MN drastic weather changes. And as I stated earlier, I have been working more than I should and may have overextended myself. All advice would be welcome.
Oh yeah....I have been drinking one less coffee a day also. That may ahve to change :)
coffeelover

elephant
06-13-2010, 09:50 AM
Hey Coffeelover, I too decreased my coffee to one cup a day recently. I'm sorry your feeling sluggish. How much magnesium are you taking? Hope you feel better soon.

Sangye
06-13-2010, 11:58 AM
Lisa, do you take the Vit D/Mag supplement close to any of your other meds? Also, tell me what type of Vitamin D it is-- the label will say D2 (ergocalciferol) or D3 (cholecalciferol).

An easy way to tell if it's your supplement is to stop taking it for several days. Many of the OTC brands have fillers and artificial colors that can cause pain or fatigue in people who are sensitive to them.

Congratulations on the coffee reduction, Elephant and Lisa. If you're tired from that, give it time. The extra caffeine you gave your adrenals really upset them, and it can take awhile for them to make friends with you again. :)

elephant
06-13-2010, 12:24 PM
It is actually going good Sangye. I plan on dropping my coffee, June 20th, you see....I am tapering very slowly. Tapering down 1 oz a day. ;)

Sangye
06-13-2010, 11:44 PM
That's actually a great way to do it!

I used to suggest that my patients cut down on an addiction (caffeine, smoking, etc) by dropping 1/4 of it at a time. Get completely comfortable with the new level before you drop it again. Easy peasy.

Jack
06-13-2010, 11:57 PM
Get completely comfortable with the new level before you drop it again. Easy peasy.
Remember this with your own Pred reduction attempts Sangye. Don't over do it! ;)

elephant
06-14-2010, 02:50 AM
Thanks Sangye, appreciate any info. :)

Sangye
06-14-2010, 08:57 AM
Remember this with your own Pred reduction attempts Sangye. Don't over do it! ;)

LOL-- That's what I was doing, Jack! The only time I dropped too fast was at 0.75mg. Back at 1mg now and will stay there for at least a week. :)

Sean48
07-22-2010, 11:58 AM
Thank you Sangye.....I am almost positive there is a holistic doctor in the next town. i am going to check on it. My friend went to her after her husband died and she was a great help to her. I must double check if she is holistic. I love this forum...