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View Full Version : Vitamins or supplements anyone?



Suzanne
02-18-2013, 08:00 PM
My rhuemy and gp together have me on supplements as well as plaquenil and celexa. They help quite a bit. Vitamin D cuz I can't go out in the sun, b12 for energy, fish oil for joints, melatonin for sleep. The fish oil and melatonin are a huge help. My joints still hurt, but are much less stiff with fish oil, and melatonin gives me a great nights sleep with out the nasty side effects of scripts.

ItsLupus2007
02-19-2013, 01:05 PM
I take the script 50,000 iu vit d when I was doing OTC and it did not help.

I still take multivitamins but I have also added magnesium at the suggestion of my rheumy when I started having weird leg issues also accompanied by severe pain.You actually could see the skin ripple and move around.Kind of like Alien but no extraterrestrial child was bursting forth due to my great disappointment.As at least at the end of labor the pain ends :)

The magnesium helped tons.No more ET children spewing from my shins.

Be well

steve.b
02-19-2013, 08:33 PM
i have been thinking hard about answering this.

different people react very differently to the same suppliment.
i used to take magnesium.....
but due to upset bowels no longer do.
i also used to take vitamin c.....
these also are not good for ibs.

please think seriously about what "extras" we put into our bodies.
if you are lacking something.......
then you need it.
but if it is just to give you a boost. eg boroca in the morning, please be careful.

talk to your chemist about the side effects, and cross reaction with your meds.
a daily multi vitamin might be good for "jo normal"......
but it may not be good for us and our medications.


i do take vit d, folic acid and fish oils, all with doctors requests.

ItsLupus2007
02-20-2013, 05:40 AM
I agree with Steve wholeheartedly.Pleasepleaseplease make your Drs aware of what you would LIKE to supplement with and do not do so until you get their approval to make sure that there is not going to be a medication reaction.All I have added have been per Dr order.

Just because it is a "vitamin" does not mean it cannot and will not cause issue.

Everyone is different but please make your dr aware of what you are doing not after the fact but before as some supplements can really cause issue with our bodies and with the meds we take.

debbie-b
02-20-2013, 06:02 AM
My rheumy is a firm believer in vitamins and minerals and had me take all kinds of supplement.
From Vit-D, Co-Qu 10, fishoil, Vit-B, Vit-C and many more. I took all of that for a year, because he was convinced, that it would eliminate or better my pain. It changed nothing, except that my wallet got alot smaller, they cost alot of money.
Now I only take Vitamin D, because that is the only thing, that is always low.

Debbie

Suzanne
02-20-2013, 02:46 PM
Absolutely work with dr on supplements!! Would never take anything without my dr knowing.

Leaniebean
02-22-2013, 07:43 PM
I take a B12 vitamin OTC and a MultiVitamin. I don't take them daily because of my plaquenil and Celebrex. I love my Celebrex but I try not to take that daily. I don't want to over load my system with multiple pills and I am just getting started. I have recently started the Mediterranean diet to help naturally with my arthritis. Does anyone have random muscle aches almost similar to a Charlie horse?

SleepyInSeattle
02-22-2013, 08:19 PM
I am on a restricted diet and a number of different supplements recommended by my Rheum and my Neuro. They have helped me a lot.

I second the notion that you should not change your diet or add ANY supplements without talking to your doctor about it first. Some supplements will affect your blood tests - especially liver tests, which are crucial.

There have been supplements I wanted to try that my doc advised me against, for good reason - I learned a lot by discussing them with him. There have also been some that I really wanted to try despite the fact that he didn't think they'd do me any good...we had that discussion, he kinda shrugged and more or less let me know he thought they were a waste of money, but if I wanted to try them, go for it...and I DO feel like some of them help me.

Bottom line - do your own research. If you want to try something, you should have a chance to try it - but remember that there's no CURE for this stuff (unfortunately), natural or otherwise....and having an HONEST, TRUSTING relationship with your Rheum is the single MOST important thing in ensuring that you make progress in treating this awful disease. You and your Rheum might not always agree on things, but you have ot be grown-ups and be honest about things over the years. If you cannot have that relationship with your Rheumy, find a new one.

steve.b
02-22-2013, 08:27 PM
....... There have been supplements I wanted to try that my doc advised me against, for good reason - I learned a lot by discussing them with him. There have also been some that I really wanted to try despite the fact that he didn't think they'd do me any good...we had that discussion, he kinda shrugged and more or less let me know he thought they were a waste of money, but if I wanted to try them, go for it...and I DO feel like some of them help me.

Bottom line - do your own research. .............

very good comments, thank you

mastiff0
06-26-2013, 12:18 PM
Studies have shown some positive benefits of particular vitamins/minerals for some SLE sufferers. Omega 3's/ fish oils in high doses for example. Also, there are many vitamin deficiencies that seem to pop up along with SLE symptoms. Some have found benefits in taking supplements to try to get these vitamins back to norm. I had some tests done (before the SLE diagnosis) that showed low levels/minor deficiency in Vitamin D, selenium and manganese, and all of these are typical with SLE. Vitamin D and selenium supplementation have some some positive effects in testing.

I agree with what the others have said- be honest with your doctor with what OTC stuff you are taking- you don't want any side effects.

Eileen
07-08-2013, 06:41 PM
I have found my answer to the suggested magnesium intake and dealing w IBS, topical magnesium.
I have a written prescription for 10% magnesium cream compounded by a pharmacist, small amount applied in alternating places forearm where ever, helps wonderfully, actually better absorbed this way and great for the skin.
No IBS or colitis irritation, no horrible spasms any more. No weird fillers to react too. Nice.

Abbyrition
08-17-2013, 07:24 AM
To clarify before I begin my rant - I have and recommend to evereyone else to discuss all vitamins and suppliements with your doctor.
Now the ranting part. Doctors are not trained - not even one course - on nutrition, it is not required to become a doctor.
My primary care is concerned about my iron levels, and when I tell him I am a vegetarian, he tells me to go eat liver - really? Non animal liver... Duh. So after years of anemia he finally refers me to a hematologist.
My neurologist said I should be taking vitamin d3 5000 once a day, and a vitamin B12 suppliement, both levels were a bit low.
My rhumatologist has decided if I fall below 10 of my iron bloodwork I will get transfusions. Until then, try to get more iron from food, but he can't tell me what to do differently because he doesn't know nutrition - he said that. I guess I appreciate the honesty. He does have me on Medrol for the inflamation, Methotrexate (and subsequent folic acid) for the SLE, and Phentermine for the fatigue and a nice buffer to the side effect of the steroid of wanting to eat all the time. He also said my vitamin B12 levels were fine off the same bloodwork that the neurologist told me were low.
My hematologist is on the same page with the Rheumy about the transfusions, so yea! But he wants me to take a vitamin C suppliement with my meals to help absorb more iron from my food. He also wants me to take a daily folic acid instead of just the day after my methyltrexate. However upon his recommendations I looked up some info and taking or having too much folic acid can cause colon cancer (I have already had precancerous polyps removed at the ripe old age of 32) and too much folic acid can cause the methotrexate to not function. I'm certainly not taking this horrible toxin to counter act it's effects.
So, of my 3 doctors, they are all on different pages even just interpreting the blood tests, and telling me what I need. So, while I trust my Rheumatologist the most, really I trust none of them. I am considering seeing a certified nutritionist, getting their recommendation and taking that back to my Rheumy to make sure none of it reacts with my meds.
Until then the vitamins I am taking are:
Vitamin B12
Vitamin D3 5000
And Vitamin C
And the folic acid only the day after my methotrexate as perscribed.

This vitamin business is tricky stuff, but I suppose if we as humans weren't looking for the easier, faster, cheaper way to eat we probably wouldn't be in many of the messes we are in now.
/rant

SleepyInSeattle
08-17-2013, 08:42 AM
It is frustrating, but the way I see it, nutrition is pretty complicated - it makes sense to see a specialist about it, the same way we usually need to see specialists about our Lupus (instead of just seeing a GP), an ophthalmologist for our eyes, a neuro for brain/migraine issues, etc.

It's another office visit and co-pay to add to the list, but well worth it, in my opinion - especially if you are also dealing with dietary restrictions (like being a vegetarian). Good health begins (and can end) with nutrition - if you don't have the right fuel, you CAN'T be healthy - so it's worth it.

I have seen really wonderful effects on my overall health with doctor-guided changes to my diet and supplement routine. I think seeing a nutritionist is a great investment.

And really, it's good also that your docs will admit they don't really know, or at least that they don't agree. They can't know everything, and nutrition is not their specialty.

In case it helps, I am also on Mtx and take folic acid every day - my doc said just don't take it WITH the mtx (I take my vitamins in the morning and the mtx at night). I am guessing that what really matters is the overall dosage - whether you take one big dose a week or smaller doses every day. I did not know that about colon cancer, though...I will do more research. This forum is so great for learning stuff like that! Thanks for the info...

Jaynie
08-18-2013, 11:21 AM
My rheumy recommended between 6-18g (yes grammes) of omega3. I was taking six of the one-a-day capsules. I don't think I noticed a big difference so I don't take them now.

I don't like to trouble my doc, LOL. But I don't take anything extra either (except maybe lactulose when I need it or activated charcoal every now and then)