Hey everyone. This site has been a part of my life since 2002 and I have to share something with you. I suffered miserably with joint aches and pain and especially muscular aches, pain and weakness for 5 years, until I switched rheumatologists. The new rheume ran a Vitamin D test and mine was at 5 (waaayyyyy low). He put me on 50,000 IU, 2x a month and it has absolutely changed my life. I still have the sjogrens, and all that postive ANA, etc., but my pain is gone and my life is back. If none of you have had your Vitamin D checked, it is so simple and it changed my life after 5 years.
Hi Noki,
So happy to hear something has worked for you and the pain. I just had my Vit. D levels checked and I'm waiting to hear from my rheumies office.
I hope all this pain is something so simple as a vitamin supplement. Take care and keep enjoying life.
Hugs, Pooh
Congrats on feeling better!! mine was also low so dr put me on Strovite adv with extra vit d (it is a Prescription). I have only been on it 3 days so its too early to tell!
;D
I hope it helps you as much as it did me. I never would have known just the supplement would help. But the Vit D deficiency was the basis of my pain and weakness. NO other doctor, for 5 years, checked my Vitamin D level.
Good luck.
Hi Noki :)
Thank you very much for sharing. It's good to read success stories in here. I'm so glad you are feeling better.
Take care - Scottie :)
My rheumy did check my Vitamin D and found I was low. I took an RX for 3 months and will have to have it checked again soon. I did not notice am improvement like you, but I have some other health issues which make it hard to tell what's up.
Lucy
Good Thread Noki. I just put this question on my list of questions for my rhumy for my next visit.
Steve
My Dr told me about the vitamin D3. Had never heard of that one before. It is a better one then just the regular vitamin D. Is that the one you are talking about the vitamin D3?
Denise
Auntie,
I checked my prescription and it is D3, Im not sure if there is a difference. I just added it to the list of questions to ask dr.
:)
Hi Noki,
Well, my rheumy called this morning and said that I am extremely low in Vit. D department and he wants me to start taking 50,000 units every week. Then in 3 months to have it checked again.
I hope I will be lucky enough to tell you all in 3 months that I am feeling even 50% better. I won't be greedy. ;D If it improves more, I will be most grateful.
Hugs, Pooh
Hope it worrks Pooh.
Denise
Hi Noki, like a few others here, I'm on my 2nd round of 50,000 units every week and I'd rather be doing anything else! ;D I'm really glad that it's helped take a lot of your pain away, that's always really great news!!! :D
The first round did help me a bit, but I still had a lot of pain issues even when my vitamin D level was at 50. I sure hope that this round helps more than the last round - maybe my "base level" needs to be higher than 50? I guess it's something I need to ask the rheumy and the endo.
Hi Pooh, I'll keep the old fingers crossed for you too!
Take care -
Patze
I have a question and hope I am not showing my ignorance in this matter. When the doctor says 50,000 iu a week, does that mean over the course of the week you would take that much? For example, the highest dose of Vit. D I could find is 2,000 iu. So would you take about 3 or 4 of those a day to get the 50,000 iu required or are you taking a special prescription Vit. D from the doctor once a week that is 50,000 iu at one time?
Liz D.
Liz, never be worried about asking a question for fear of appearing ignorant...none of us can know what has never been explained to us, and to my mind, real ignorance lies in not trying to learn.
The tolerable upper limit of Vitamin D (for those without documented deficiency) is 2500 IU/day. When a doctor recommends a higher dose he will usually order a RX strength supplement, for a limited period of time.
As with all supplements, you should discuss taking Vitamin D with your doctor, and high dose treatment like the 50,000 IU/week should never be self prescribed (D is a fat soluble vitamin and can build up in the body; ingesting high levels can also mask other conditions, like hyperparathyroidism)
Linda,
Are there any signs to look for with the Vit. D deficiency? How can one tell if they are low on this vitamin? I meant to ask my rheumy why he was testing me for this, but he was running late and I didn't get a chance.
Pooh
Pooh, about the only subjective (felt by the patient) symptoms would be bone pain or tenderness, and increased tendency to fractures. Objective signs( determined by the doctor) would include low lab values, or changes in calcium metabolism or parathyroid function.
I'm not sure how other doctors do it, but mine includes both vitamin D levels in his routine yearly physical, and more often if there's an issue.
oh gosh.....I've been through all this Vitamin D stuff too.
Noki, a 5 is really really low! No wonder the Vitamin D is helping you!
I knew I had Vitamin D issues long before I found out I had Sjogren's.
I was out and out miserable.....very very weak and stiff muscles. The fatigue was incredible.
Once I figured it out I started getting in the sun a lot and that really helped. But now, four years later sun doesn't make a difference, so I am on 50,000 once a week too.
(for whoever asked , it's a once a week pill)
I have been definitely getting stronger and less stiffness.
Two of my children have serious Vitamin D issues...one was had a level of 7 and one had a 12.
They also have autoimmune issues, what a surprise! I am thankful my new rheumatologist has done a lot of reseach on Vitamin D and really believes in it.
Donna
It was my ObGyn who sent me for a Vitamin D test. She does it routinely for all of her patients. I got the gold star for this anyway. I had the highest in the practice lol.
I guess it's the Caltrate +D and the Fosavance because it sure isn't coming from the sun
Annette