Problems with Taking Vitamin D and having Lupus and Rheumatoid Arthritis

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sylviarose54
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Date Joined Apr 2010
Total Posts : 18
   Posted 4/5/2010 4:53 PM (GMT -7)   
Does anyone else have problems when they take Vitamin D, such as more pain and feeling like their Lupus is flaring up?  I have tried off and on to take Vitamin D since the Doctor keeps telling me I am low, but when I do I feel worse.  I seem to feel better after I get off of it, but I don't know what to do.  I did mention this to my Rheumy, but he thought it was unusual.  Please, if anyone here has that problem, let me know, and what you did about it.  Thank you
 
Lupus, RA, taking Methotrexate, prednisone, folic acid and tylenol
 
Sylviarose

Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 4/5/2010 5:20 PM (GMT -7)   
I take Vitamin D regularly, sometimes prescription strength, sometimes just over-the-counter, depends on what the dr orders...

I actually don't know if I'd feel better without it, I guess I could try it and see, but I don't think it'd really matter for me or I probably would have noticed before now.

If you are taking over-the-counter maybe try a different brand?
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/5/2010 7:47 PM (GMT -7)   

Welcome Sylvia Rose!  I think we must be two very odd ducks, but YES, I swear I feel worse when taking larger doses of VitD.  My rheumy had Rx'd 50,000 units of Vit D (prescription dose) to be taken once a week for 8 weeks a couple years ago.  After the first one, I had a muscle spasm in a new place, and worsening back pain.  Things got even worse, pain and malaise wise after the second one, including more muscle spasms.  I think I tried a third one and then called it quits - actually, so did the rheumy - telling me to go to 1000/day over the counter.  Well, I felt so crummy, I didn't start the OTC right away - and the longer I stayed off the Vit D - the better I felt. 

A year went by - Vit D checked again - and was told to get on 1000/day pronto and re-check the level in 2 mos.  I followed orders.  Went into big flare just after the two month mark.  I went to a different lab for the re-ck and for some reason they did both the OH25 and 1,25.   Rheumy's office called and told me to stop taking Vit D supplement altogether because the 1,25 level was extremely high.  Also - the 0H25 was even lower than before I started the OTC.

Six months later, I see rheumy's PA who identifies osteoporosis and says I must bring up my vitamin D so I can begin taking Fosamax for the osteoporosis.  Back to 50K weekly.  (we all must be slow learners)  I took two before going into another flare and stopping. 

Fast forward to last summer.  Was tested and diagnosed with Celiac disease.  Vitamin D deficiency again noted.  He wanted me to take 1000-2000 per day on top of Cal/Mag/Vit D supplement and the Vit D in a multiple vitamin.  Same story - felt worse, stopped, started again at lower dose, several times.  Now I'm taking about 500 per day in the Cal/Mag/D combo.  I am still having major muscle issues - especially in my hips and knees - tops of thighs.  I am sure it is the Vit D.  Along with the muscle pain and weakness, throw in extreme constipation (I now eat prunes daily and a boost of magnesium every other day) and a return to a problem with heart palpitations which I have had over the years, but had not had problems with for quite some time.

I have asked the same question about Vit D on this forum, and most people seem to feel better on it.  I am seeing Integrative Medicine doctor tomorrow.  He won't be happy with my measley 500 mg. of Vit D - but I refuse to take more until he does the 1,25 test again and we see where that level is.  If you google Vit D sensitivity or toxicity you will find some info.  It would be important for you to know whether your calcium level is high - as excess Vit D can cause that - which can be a real problem.  Mine has been on the high side of normal.  I asked this doc if the Vit D could be causing the muscle problems, and he said yes, because I still wasn't absorbing due to the celiac, and it wasn't getting into my bones, but just circulating in my blood.....or somethingl that like.

Wow - sorry about the chapter book.  If I get more specific info tomorrow, I'll post it.  Labtestsonline.org explains the different tests.  Good luck, and hope it helps to know you are not the only one !

Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


Lynnwood
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Date Joined May 2005
Total Posts : 7018
   Posted 4/5/2010 8:32 PM (GMT -7)   
Good info, Lucy, Thanks!
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


bittersweet2u2
New Member


Date Joined Apr 2010
Total Posts : 12
   Posted 4/5/2010 10:22 PM (GMT -7)   
i am new to all of this, but i was diagnosed with lupus and vit. d def. i was put on 50,000 iu, twice a week for 10 weeks. the first pill i took as soon as i got it, was no problem. i took my second one today, after about 4 hrs. i thought i was gonna fall apart. i started aching all over, like you do when you have a fever. ive taken tylenol arthritis twice today with no relief whatsoever. 3 hot baths with epsom salts. i did not touch my house or even load my dishwasher, i laid down and slept 3 solid hrs, i felt so bad. but, i thought it was this bad flare up of lupus that had me down and today was gonna be my down day. now, im thinking, great.....now what lol....good luck to you though, im gonna read up on this some more....

sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/6/2010 4:38 AM (GMT -7)   
Wow, Thanks for all your info Lucy.  I feel like someone finally understands what I'm trying to say.  I even get heart palpatations like you, which I have had to get checked out.  I don't see my Rheumy until June, but I am going to talk to him about some of this stuff.  Please let me know if you get any more info.  I had to stop taking my Vitamin D yesterday cause I just felt lousy.  I will keep checking the boards to see if anyone else feels like I do.  Thanks to all who responded so far. 
 
sylviarose

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/7/2010 1:15 PM (GMT -7)   

I did talk to the doc yesterday about the Vit D and increased muscle problems, etc.  He agreed to add the 1,25 test while checking the D level again.  Will see what that tells us, if anything.  He feels that there is probably a connection with the Celiac and the malabsorption issues that have resulted, but also acknowledged that he has a couple other patients like me in his very large practice, who just can't tolerate the supplements "per the norm".   There doesn't seem to be a standard explanation.

He advised me not to take any "naked" D, or Vitamin D that is not in combination with the Calcium/Magnesium, but to slowly try to increase my intake of the Calcium/Mag/VitD supplement.  I'll probably wait until we get the test back, but then will start with an extra half tablet of that a day and build slowly.  Apparently absorption is improved or better tolerated when integrated with the Calcium and Magnesium.  I had already stopped taking any "naked D" for the last couple weeks, and it has seemed to help.   In the past when I've just stopped Vit D supplementation  because of side effects - it's taken about 3 weeks for them to settle down.  He also said I could try an extra 250 mg of Magnesium at night to combat the constipation.

It will be interesting to see what the latest testing reveals.  Hope this helps.

Lucy

 


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/9/2010 3:08 PM (GMT -7)   
It did help to hear what you doctor told you. I think I will mention that other test to my doctor when I go in June. I just seem to be sensitive to a lot of things that other people have no problem. Thanks again for letting me know what you found out. I hope things go well for you.

sylviaarose

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/9/2010 4:13 PM (GMT -7)   
 Sylvia Rose, I will post again when I get the results of the latest D levels.  I too, seem to be extra sensitive to a wider variety of things than the average person.  I can't take Statin drugs either, for example.  Good luck to you, and please let me know what you end up finding out.
 
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/9/2010 5:37 PM (GMT -7)   
Lucy, please do let me know the results of your D levels. I am anxious to see what you find out. Good luck to you also and I will post if I find out anything new. Thanks

Sylviarose

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 4/11/2010 6:55 AM (GMT -7)   

Hi! Sylvia Rose,

I tried taking Vit D as a separate tab several times since I got sick years ago. Never had a level drawn until last April. Per our hospital lab standard, It was low at 30 and my dr/lab likes to see them over 40 so he said the calcium tab with d I had been taking was not enough. Will be rechecking it next week, I see him every 6 months. I believe, and still do, that the D makes my neuro symptoms more unpleasant. My nerves seem to "scream" and my balance seems worse. Since it is "all in my head", I figure, it's simply all in my head. tongue He suggested 1200 IUs plus my calcium, but I had to limit it to two 400Iu capsules. And some days I just skip it all together if I have had a limited 10 minutes of being out in the sun. Just spent a week in Georgia and Florida with my daughter, and found my uv protective jacket from coolibar was wonderfully helpful. I didn't get a prickly red rash even once, and was able to stay on the beach in the late afternoon for almost a half hour. I used it in the car to cover my arms and lap from the sun streaming in the windows, too. One of the things I miss most is laying and playing out in the sun. Lack of vitamin d is really a concern because prednisone does a number on our bones..... need D for healthy bones so I have been trying to eat a healthier diet. Really trying. Every pound I lose relocates to my face since I have needed so much prednisone.

hugs, suetoo

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/15/2010 11:17 AM (GMT -7)   
sylviarose said...
Lucy, please do let me know the results of your D levels. I am anxious to see what you find out. Good luck to you also and I will post if I find out anything new. Thanks Sylviarose
 
I did get my result back and the 1,25 level was 23 - which is just barely inside the normal range (18-78).  The time I referred to before, it was in the 100's.   So....it would seem that the lab result doesn't support my theory about a "build up" or  just too much Vit D producing symptoms, this time,  though I may still be sensitive for unknown reasons.    So for now I'm going to follow the doc's advice and stay away from "naked D" and gradually build up my intake of the Cal/Mag/D combo supplements.  He'll recheck the D levels in a couple months.
 
On another note - I have finally found a great rheumy!  It does seem third time is the charm.  The last one dismissed my hip, leg and back pain as fibro.  Wonderful new guy recognized bursitis in both hips and injected them with some sort of steroid.  By the second day (yesterday) I felt like a new woman.   Trying to keep from overdoing and "respect" the medicine, but it is quite wonderful to crawl out from under constant pain for awhile and have some energy.   New rheumy also Xrayed my knees - first time anyone has acted on that pain/problem. 
Good luck to all of us trying to sort out the questions and find answers!
Sylviarose - let me know what you find out.
 
Lucy
 
 
 
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 4/15/2010 11:36 AM (GMT -7)   
YAY! Lucy, so glad you finally found a wonderful rhuemy :). Glad you have been able to find some relief from all your pain!!!

sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/15/2010 3:37 PM (GMT -7)   
Lucy, It sounds like Vitamin D is a hard thing to figure out. I know we need it, but it's hard to take when you just start feeling crummy after a while. Glad to hear about your vitamin D results. Also glad you have a good Rheumy. That really helps a lot. Good thing he gave you shots to help your pain. It's very hard to live with chronic pain day in and day out. Like I said, I won't see my doctor until June. I will post again if he tells me anything different. Hope to keep in touch

Sylviarose

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 4/15/2010 6:32 PM (GMT -7)   

Thanks Amy and Sylviarose!  smilewinkgrin

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins
 
 


Butterflake
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Date Joined Jun 2006
Total Posts : 1547
   Posted 4/16/2010 4:46 AM (GMT -7)   
Hi Sylviarose and welcome to our forum. This probably won't help you, but I recently read: There are two kinds of vitamin D you can take, vitamin D2 or D3. You should try to take vitamin D3. This form of vitamin D is absorbed better by your body.  Love, Butterflake
Systemic Lupus ('05), depression, fibro, sjogrens, cns issues, diabetes, gerd, hypertension, colitis, stage 1 kidney disease  Lots of meds.  Donna 


sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/16/2010 5:46 PM (GMT -7)   
Hi Butterflake, Thank you for your response to my question. The Vitamin D I was taking was D3. I'm not sure what the difference is between D2 and D3, but I might try the D2 to see if there is any difference. Thanks again for your response.

Sylviarose

jesimae
Regular Member


Date Joined Oct 2009
Total Posts : 109
   Posted 4/22/2010 8:12 PM (GMT -7)   
Ok so I'm new to the whole Lupus thing, but, as a nurse, I am very familiar with the whole electrolyte balance thing. If you are on a supplement that contains, calcium, magnesium, potassium, and yes even sodium, you have to have lab draws at least monthly. Electrolyte balance is extremely important and delicate. We're talking just a few points in either direction and you can have major consequences such as life threatening heart arrythmias, seizures, muscle spasms, etc. Make sure your doctor is taking these lab draws!!! The funny thing about calcium is that if there's not enough in the blood stream (or if you drink sodas), your body will pull it from the bones. High levels in the blood stream cause heart arrythmias. SO this is why it's important for this to be monitored on a regular basis. Even more so if u take potassium. Too much of it is lethal. Vitamin D helps you absorb calcium, so it makes sense that if u get too much of it you can have issues. I think that those of us with autoimmune disorders are very much more in tune with our bodies than others. I have asked others if they can feel the blood going through their veins sometimes, and they look at me like I'm insane! lol maybe I am...a little;P
Jessica, diagnosis: unsure


sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/24/2010 6:48 AM (GMT -7)   
Hi Jessica, Good to hear from you.  I didn't know that you needed to have blood drawn every month.  I get it done usually every 3 months when I see my Rheumy.  Are you saying that Taking Vitamin D might affect how we absorb calcium in our body and that is why some of us feel like it bothers us more than others?  I know I will be talking to my Dr. when I see him in June about the fact that everytime I try to take Vitamin D, I feel ok for the first week, but then after that, it seems that I start to ache more.  Glad you joined the forum.  Hope you find out what is going on with you.  Let us know, and the best of luck to you.
 
Sylviarose

firebabe
Regular Member


Date Joined Aug 2007
Total Posts : 206
   Posted 4/25/2010 9:32 AM (GMT -7)   
I just read this post this morning and about 2 weeks ago, I just started taking vitamin D.  Gradually I have been getting worse.  I did not take it today and pulled it out of my pill containers for the rest of the week.  It will be interesting to see if it makes a difference or not.  I was told that taking it would help with later night aches and pains, but now my whole body hurts.  I'm not sure if that can all be contributed to vitamin D., but I'll work on figuring that out. 
 
Thanks!
~Tammy~
 "Challenges make you discover things about yourself you never really knew."
 SLE and Class II Lupus Nephritis


sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/25/2010 11:51 AM (GMT -7)   
Hi Tammy,  Good to hear from you.  That's about how it happens to me.  I will take Vitamin D for about 2 weeks and notice that I gradually get worse with more aches and pains.  Please let me know how you feel after getting off the vitamin D.  It might take a week or 2, but I am curious to see what happens.  I just don't feel this is in my head.  My doctor kinda looks at me funny when I tell him this, but I think there are some people that it affects differently than others.  Good Luck to you and I hope you feel better.
 
Sylviarose.

tyancie
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/27/2010 2:53 PM (GMT -7)   
I have RA was on enbrel since 05 I was doing great then last year I had first vitamin D test I was at a 8 very low, so 50,000 IU twice a week, I started havin flares all along now it has slowly went up im at 18 but truth I woulf forget a dose here and there I really think sub cons. cause I was fine till the vitamin D now enbrel not workin and they want to add aravra. Everything I read seem like it would help but im not taking it anymore. I think it caused the flares.

sylviarose54
New Member


Date Joined Apr 2010
Total Posts : 18
   Posted 4/27/2010 4:35 PM (GMT -7)   
Hi Tyancie. Good to hear from you. I am starting to see that I am not the only one with this problem and I know it's not all in my head because I have gone off and on Vitamin D with the same results. Let me know how you feel after being off the Vitamin D for awhile. I hope you start to feel better.

Sylviarose

GingerJen888
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Date Joined Mar 2011
Total Posts : 4
   Posted 3/16/2011 8:15 AM (GMT -7)   
I feel a lot worse when I take vitamin D or spend a lot of time in the sun. When I looked into it I found out that overactive white blood cells and cancer cells can make the enzyme needed to convert vitamin 25-D into the active hormone, 1, 25-D. The current research about 'deficiency' pretty much just tests 25-D alone. It is only half the chemical equation though. Pour in more supplement D and if it is being activated then the follow up lab tests continue to show low levels of 25-D. Just test the 1,25-D also and see the actual overactivity of the hormone. The active hormone can cause symptoms and add to long term calcium deposits.

I avoid vitamin D and calcium rich foods and supplements and I don't spend much time in the sun and my pain is less. Magnesium and B vitamins helps me, so does glucosamine. High levels of 1,25-D cause calcium to come out of the bone and cause muscle cramps and joint problems. Just ask your doctor for both lab tests if worried; 25 hydroxy D is the supplement and sunlight kind and is a cheaper lab test and 1, 25 dihydroxy D is the active hormone and is a more expensive lab test. - Ask for both tests, we are worth it. -GingerJens

lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 3/16/2011 11:27 AM (GMT -7)   
Hi GingerJen and welcome! The 1,25 info is really interesting, and certainly makes sense in my scenario. I have read recently that more current studies are not upholding the positive benefits of so much extra Vit D added as supplements. It will be interesting to see where this research goes.
Thanks for posting, and you might want to start a new subject to introduce yourself, since this is an old thread. In any case, glad you're here!
Lucy
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