Vitamin D deficiency vs PMR
Posted , 17 users are following.
Sorry folks - I have posted this before to EILEEN at least but cant find it anywhere and unusually no-one has commented or my emails aren't coming through again but couldn't find original post and I suspect it got lost in the new development of this site !!! What a mess up putting it politely!
Last week I had a raft of blood tests and my VitD was very deficient and required an immediate correction of 50,000 units per week for 6 weeks. Many VitD Deficiency symptoms mimic PMR ! I Would assume this would have been investigated before putting me on such a nasty drug like Pred........ Does anyone have any knowledge or experience of this......I will be very cross if I have suffered unnecessarily on PRED, and Vit D Deficiency was the culprit for my aches and pains!
I so hope you are all still on this forum as it has been inaccessible for a while.....it will be a sad day if you all leave the sinking ship but i assume this is what the developers meant when they were trying to reduce the advertising we see......so I assume they have to pay for it somehow! Sadly i am too poor to pay for such a forum and as advice comes from individuals in a similar position I think its a liberty - so perhaps bring back the advertising......such a shame if it all goes to pot as it has been a godsend to me on more than this topic.......but perhaps we will link up on another forum!
MEANWHILE I hope someone sees this and can answer my question......
My very best wishes to you all if you disappear xxxx
0 likes, 36 replies
nick67069 missmagwumps
Posted
I seem to remember reading that vit D deficiency can have similar symptoms to PMR and that testing for deficiency should be done as one of the tests as a process of elimination before PMR is diagnosed. I must admit that is all I remember, since it did not apply to me, so I was reading superficially.
BTW, if you want to find some old discussion, in the upper right corner of the screen there should be two labels - "Inbox " and "Notification". If you click on notification, you should get another choice - "activity" and there you will find your old posts. You can search for the one you were referring to from Eileeen hopefully.
MhairiP nick67069
Posted
@nick67069 - you are a hero - thank you for pointing out the notification/activity options! 👍
Anhaga nick67069
Posted
Thanks Nick. But that used to be a lot easier. Sure don't want to scroll through all my activity! We used to have the activities in separate boxes so you could just scroll through replies or posts you'd made, not everything all in one list. Seems like the old system was in fact more sophisticated and functional in spite of its shortcomings.
nick67069 Anhaga
Posted
Honestly I have no clue what is driving these "upgrades", because they are certainly not from us- users. I wish they just go back to a original site that was a year ago or so, and just add edit function, which every one asked for. For example, now spell checker does not work - it highlights the misspelled word, but it does not offer suggestion ! Now who in a right mind would request such a change??!!
EileenH nick67069
Posted
In order to do that nick you would have to scroll through literally hundreds of back posts, from everyone. I haven't time to spend doing that - yesterday there were over 70 posts replying to a single comment between the comment and one particular reply when I looked to get the context. The activity doesn't tell you the topic of the post, just who posted it - so it tells me someone replied to a post initiated by Lynda but not WHICH thread by Lynda and Lynda has started well over 20 threads in the last few weeks. So if you are looking for a particular reply you really are looking for the proverbial needle in a haystack. If you are looking just for a reply to you personally it used to be easy.
As for who drives these - I wish I knew. There is a constant desperation on the part of providers to initiate "new and improved", seemingly a desire to remain current. Unfortunately the changes are implemented these days without doing market research and by people who have never used the product themselves so they don't understand how it is used, My husband says all his device development problems have been because the software engineers did what THEY thought was wanted despite having had it spelt out in very simple language. And they were warned each time that certain things were not a good idea.
nick67069 EileenH
Posted
Well we are hoping that you know the people who know the people who can stop this nonsense of pointless "upgrades". As I may have mentioned my background is engineering. My last job was to manage department whose responsibility was to create requirement for software product development and test the product against requirements before it goes out to customer... There was a process, something really lacking here.
Emis_Moderator nick67069
Posted
As a follow up after reading other posts, below is where you can find all of the individual profile pages and what they do. You can get to your own profile page by clicking on your name on any post. If you want to view another user's profile click on their name.
I hope this helps until we get these pages up and running fully again. I have passed on feedback received about these and along with those suggestions I have also suggested a few other changes to make these pages more useful and easier to see what each entry is about.
Regards,
Alan
EileenH nick67069
Posted
Couldn't agree more. But as you see - Alan is on the case! The man deserves a medal - if only for me having bent his ear on many occasions 😉
Now it remains to be seen if I can remember the half of his post...
EileenH
Posted
Perhaps Alan needs to get through to somebody that PREVENTION IS BETTER THAN CURE. There really wasn't any need at all for any of us to have been put through this.
ptolemy nick67069
Posted
I do remember one of our engineers had a drawing on the wall showing what the customer ordered, what was requested from engineering, what the design team designed, what the customer received, all totally different. I wish I had kept a copy.
doni89057 missmagwumps
Posted
Mostly responding just to let you know that I could read and respond to your post. Almost everyone is Vit D deficient if they don't supplement. I would personally find it doubtful that a Vit D deficiency would cause significant enough muscle and back pain to be mistaken for PMR, but that's between you and your doctor. I will throw out there that my functional medicine doctor, who is a world renowned cardiologist and best selling author, wants us to run our Vitamin D levels at close to 100, so much higher than the "normal" that other doctors look for. I currently take 15,000ius per day and may have to up that at my next appointment. Also, be sure that you are supplementing Vitamin K2 in the form MK-7 along with the Vitamin D to be sure your calcium goes where it's supposed to.
Maybe I've been asleep but I haven't experienced any changes in this forum at all, other than having to sign in again. 😦
MhairiP missmagwumps
Posted
Hello @missmagwumps! Interesting re vit D - I had mine tested (privately, not via GP) and it was slightly below normal, so I've been taking a vit D supplement. I hadn't heard that vit D deficiency and PMR had similar symptoms - must read up on that.
Re advertising on this site, I use an adblocker so I'm never bothered with ads getting in the way of things - it's great! (But I don't think the advertisers would agree 😂)
Do you also use the other PMR/GCA forum? It can be found at: healthunlocked.com/pmrgcauk
I feel quite sorry for the developers here - they have made quite a mess of this upgrade, but they do seem to be doing their best to get things working as we want.
MariGrace missmagwumps
Posted
Good morning. Yes, I was found to be extremely low in vitamin D years ago.
I was not diligent taking the 50,000. Units once a week. It worsened and about 6 months ago it was 13. No typo. My doctor strongly suggested
4, 000 units a day, which i have done faithfully. It was normal my last blood test so I am now alternating 2,000 and 4,000 every other day.
Believe me, I need the prednisone. My PMR is not good. Am struggling with it and understand, for my body, stress is a huge trigger for a flare.
Normal D levels have not eliminated my symptoms of PMR.
Hang in there. By all means, get your D levels up. I take B3, too. Vitamins are important.
Best to you, MariGrace
MhairiP missmagwumps
Posted
I have replied to @missmagwumps and @nick67069 and both replies are awaiting moderation. I wonder why?! Will this one get through?!
karenjaninaz missmagwumps
Posted
MY vit D LEVEL WAS IN THE NORMAL RANGE- LOW NORMAL. I AM ON A VERY HIGH DAILY DOSE IN AN EFFORT TO CORRECT MY REACTIVE AIRWAY DISEASE. I AM TAKING ABOUT 11,000 IU AND STILL HAVE PMR. INTERESTINGLY MY BLOOD LEVEL NEVER GO NEAR A TOXIC RANGE. THE ONLY WAY TO KNOW IS BLOOD TESTING AND ONCE YOU REACH A GOOD LEVEL DAILY SUPPLEMENTS , IN A SMALLER DOSE, ARE NEEDED BECAUSE, WITHIN 2 WEEKS OF STOPPING THE SUPPLEMENT THE VIT d levels will drop.
I DO not BELIEVE YOUR LOW d caused PmR.
There is a site called vitaminedcouncil.org where the scientific research is translated into language a layperson can understand.