Saturday, April 19, 2014

Wednesday, July 27, 2011 Kim, Community Member, asks

Q: How long does it take for Vit.D to take effect? I have inflammation in joints (thought it was RA and still could be). Taking 1000mg/day. Is that enough?

The Rheumatologist started me on methotrexate but I didn't want to take that. My other doctor said I could have the inflammation in my joints because of deficiency in vitamin D and low iron. Am I taking the right dosage and how long does it take to start working, if this is truly the reason for my inflammation?
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Answers (3)
V, Health Guide
7/27/11 9:26pm

Hi, Kim,

 

Did you have your Vitamin D level tested?  Vitamin D is not a water-soluable vitamin.  If you get too much, it can damage your liver.  If you are on a Vitamin D supplement, you should have your level tested every three months.  I was very low on D, so I had to take 50,000 units a week for three weeks. Now I take 10,000 units of Mega D-3 twice a week.   If you are concerned about your Vitamin D level, please have the blood test done to determine your current level.

 

Getting my Vitamin D level up to an acceptable level was a good thing but it did not stop the pain of my RA. If you do have RA, just getting your D levels up will not make the RA pain go away, even though it may help a bit.  Hope you feel better soon.

 

V

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Kim, Community Member
7/28/11 10:30am

Thanks V for getting back to me.  A little on my history:  I started having inflammation in joints in March, they gradually got worse and within 1 month's time I was in excruciating pain.  Rheumatoligist did all the necessary testing and all came back negative for RA.  My Vit. D and iron was low but he did not address those, he put me on methotrexate.  I then got a second opinion and my new doctor (a specialist in environmental medicine) thought he would treat the Vit. D/iron deficiencies first, saying that the Vit. D deficiency could cause the inflammation.  I am taking 5,000 units a day and have been doing that for about 4-6 weeks.  I go see the new doctor again in a week.  I don't seem to have any change in the inflammation.  My gut tells me it is RA, but I will see what the doctor has to say.  I thought that the vitamins would be helping by now.  If RA, I would rather try antibiotic therapy instead of the methotrexate.  Has anyone out there had success with the AP Therapy?

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V, Health Guide
7/28/11 9:20pm

Hi, Kim,

 

If you have active RA with pain and swelling, the disease is damaging your joints.  The only meds that seem to slow this prgressions are DMARDs. Those are disease modifying antirheumtic drugs.  It took me a long time to get a Dx (I am seronegative) and I saw some bad rheumys, so I do have joint damage in both knees and my hands. I do take MTX now. I got to the point where I couldn't get out of bed, so I did as my new doctor said.  It has helped, but I think I am going to need another med.  I am able to go to work, come home and fix a quick dinner, and I am spent. No energy for house cleaning or fun. But, before I started taking the MTX, Celebrex, Prednisone, and Tramadol for pain, I could not function at all. I am so sorry you are having to deal with this, but the quicker you treat it, the less likely you are to have joint damage.  I was in denial for a long time, so I shared my experience with Sero-Negative RA: Early Symptoms, Denial & Diagnosis  You might find something helpful there.  I don't personally know anyone on antibiotc treatment, but this is a pretty large community.  Perhaps, someone will have some information for you on that treatment.  Happy to have you here as part of our community.  Hope you feel better soon!

 

Blessings,

V

 

Blessings,

V

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Lisa Emrich, Health Guide
7/30/11 7:40pm

Hi Kim,

 

I don't know much about the idea that vit d. deficiency could cause joint inflammation, but I do know a bit about vitamin D.  When I was first found to be severely deficient.  It took months of treatments before my levels began to move upward.  I was taking the prescription (ie. vitamin D2) medication weekly.  I begin to feel symptom improvement within the first 3-6 months.  I was having a lot of achy muscle pain.

 

Over time I began adding OTC vitamin D (ie D3) but did so with testing and retesting of my levels several times that first year and a half or so.  At first it was only 1000 IU at a time.  Now I am taking 10,000 IU daily of vitamin D3 and have not experienced the achy pain in a while.

 

One thing to note is that getting rid of my vitamin D deficiency has not had a measurable impact on my RA.  It has helped symptoms which might have been reminiscent of fibromyalgia. 

 

It is very important to attack the disease RA head on.  Methotrexate is a standard approach for that.

 

Hope you begin to feel better soon.

 

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Lene Andersen, Health Guide
8/ 4/11 1:29pm

hit something and I'm going to be completely honest with you. Up to 30% of people living with RA are seronegative, that means their blood tests are negative for RA and it can make it really difficult to get a diagnosis. If a rheumatologist, a specialist in rheumatic diseases, has diagnosed you with RA and a doctor. of environmental medicine, who is a specialist in (according to the American Association of Environmental Medicine) "the clinical interaction between humans and their environment" says it's something else, I would lean towards believing the rheumatologist. That's not to say that vitamin D may not play a role - a couple of weeks ago, I wrote a post about the role of vitamin D deficiency in the development of autoimmune diseases and certain cancers - but I would recommend you hedge your bets here.

 

I understand you don't want to take the medication - none of us do. However, medication protects your joints from damage that can limit your future mobility. It's tempting to go with the theory that maybe you just need more vitamin D, but what if you do have RA? It certainly sounds as if you believe you may very well have it. And this is where hedging your bets comes in. Because I would recommend that you stay on the methotrexate, get your vitamin D levels tested and if you have a deficiency, by all means treat it. It can only improve your general health. it may also have an effect on your pain levels.

 

 it also sounds to me as if you may need some more information about RA, its implications and where treatment can get you so you can feel more comfortable about your diagnosis, be more educated so you can be convinced one way or another about your diagnosis, learn more about managing side effects, etc. Check out our basics of RA area, as well as my post for people who are newly diagnosed - there are links to many articles in our reference area that can give you more information.

 

Hang in there. And please keep us posted on your progress.

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Kim, Community Member
8/ 4/11 3:07pm

I appreciate your answer.  I have been doing some research on RA and I read the book "The Road Back" by Dr. Robert Brown and  that's where I got the information on antibiotic therapy.  I guess what scares me about methotrexate is the dangers of it and the possible cancer causing effects of it.  I spoke with someone personally who used antibiotic therapy and she is "cured" of RA.  I just don't want to treat the symptoms, I want to cure it (if possible).  My symptoms have not improved any with the Vit. D and I am ready to move forward with another treatment.  I guess I look at it this way, if the antibiotic treatment helps, then great.  If it doesn't, at least I know that I tried and the treatment won't hurt me and if I have to move to the methotrexate, I will have to resign myself to that.    I hear what you are saying about if it is RA, my joints will be damaged so I am really torn and scared.  I go to the doctor this Monday.  Maybe I will get some answers then.  I'll keep you posted.  Again, thank you!

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Lene Andersen, Health Guide
8/ 4/11 3:27pm

this is another one of those honest moments. There is no cure. Not yet, although there are much better treatments than even just 10 years ago. It is now possible to go into remission and that is something new. I've had RA since I was four (over 40 years now) and I never thought I would see this kind of progress in my lifetime. if you do have to have RA, now is a pretty good time to have it.

 

antibiotic treatment is not really used that much because it usually doesn't work. When it does work, it can be because the person had arthritis brought on by Lyme disease, but plain old RA tends to not respond brilliantly to it. Still, it's an option to consider and I would recommend that you talk it over with your rheumatologist so you get input from all the experts involved in your case.

 

Methotrexate when given to people with RA are given in very small doses and usually have very manageable side effects. Keep in mind that any medication has potentially serious side effects. Most people don't get those side effects, but if you're looking at informed consent, you have to be aware of it. You also have to look at the benefits of the medication and all of us have to make that choice ourselves. You have to ask yourself what risks you're willing to take to not only protect your future from the impact of RA but also get back to your life. You are the only person who can answer that question, but make sure that it is an informed decision. That means that you should check with your specialist regarding the antibiotic issue, as well as the vitamin D. It also means poking around on the Internet so you can ask informed questions when you do talk to your rheumatologist. Being diagnosed with RA means you become an expert in your own condition. It can be quite a bit of work, but and again, it's the only way to go.

 

Just one last comment about risk. It can be helpful to put it into perspective. For many of these meds, the risk of developing any serious side effects is far less than being in a car accident and most of us get into a car every day without thinking about it.

 

I'll be thinking of you. Looking forward to hearing what happens.

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Kim, Community Member
8/ 8/11 4:09pm

Well, went to the doctor today.  Right now, he thinks I have degenerative arthritis.  Wants to keep me on the D3 and B6 and has added condroiton/glucosamine/MSM supplement.  He has also started me on a low-doze of antiobiotic (doxicycline).  All of these treatments are harmless to my system and I am ready to wait a few more months to see if they work.  I will pray that this is the answer.  His opinion of the drugs like methotrexate are they are "poisonous" and people have died from these because they suppress your immunie system, thus allowing the cancer cells in your body that are there, naturally, with no immune system to fight them off.  They also leave the door open for other diseases that can't be fought with a comprimised immune system.  For now, I will go with this.  Will keep all updated on my progress. 

 

Kim

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Lene Andersen, Health Guide
8/ 9/11 10:36am

if you have RA (a type of "degenerative arthritis"), doing this for a couple of months will probably not cause severe damage to your joints, unless you have a severe flare. However, your doctor's point of view is a quite unusual one among rheumatologists and should this does not work within a couple of months, please consider getting a second opinion.

 

Part of living with a chronic illness involves wrapping your head around the fact you have a chronic illness and what implications of that is. None of us want to take medication, but informed consent means informing yourself of the risks of taking the meds, as well as the risk of not taking the meds. Please continue to read about your illness and consult other medical professionals so you can assess whether your doctor's recommendations will protect you in the long term.

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donna, Community Member
3/ 8/12 1:15pm

found your story interesting. how are you feeling? anything help? thanks!

 

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By Kim, Community Member— Last Modified: 03/09/14, First Published: 07/27/11