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
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.
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. :(
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.
@nick67069 - you are a hero - thank you for pointing out the notification/activity options! 👍
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
I have replied to @missmagwumps and @nick67069 and both replies are awaiting moderation. I wonder why?! Will this one get through?!
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.
hi missmagwumps, I don't have any info re vit D, but I did want u to know we're all still here....it's just been very messed up (putting it politely) lately! I too, don't have the $$for any subscription....so I hope this forum continues to flourish! I'm still here 4 you missy!
Vit D being low can cause similar symptoms - but one person I know who had the problem didn't think her pain was like PMR (she was a GCA person). My husband had a vit D in single figures and had no symptoms at all, our daughter was just fatigued and her asthma wasn't good - neither had anything resembling PMR. Getting my vit D brought up to scratch hasn't really improved the PMR.
I remember you posting - and I'm pretty sure I said that if pred helped the symptoms originally then the chances it was due to low vit D alone is small. Vit D deficiency won't improve with pred.
What reading have you got? Mine was 26 and I just had PMR pain.
Mine was 10 and the UK rating is anything under 40 deficient, 40-70 sufficient, 70-150 replete! I recall discussing with Eileen that when I was diagnosed in July, I didn't think I had PMR as my symptoms were Atypical and the rheumy wasn't convinced at first either but apparently there are different levels and he confirmed it as I responded to 20mg of Prednisolone within 7 days - think I must have been in denial as had the pains for many, many years before - over 10 years maybe now I think about it.....I mainly put it down to aging although I had back surgery and knee problems - it was all put down to poor mobility due to these problems by my GP for years until she had no reason to ignore after my back and knee surgery! BTW - my pain is just my lower limbs and hips (girdle area), no shoulder or arm pain...so probably lucky in that respect and at least I can walk better now - despite just recently having a total knee replacement.....x
I've got 2 questions.... 1) what are symptoms of vitamin D deficiency? 2) I had such an incredibly quick response to prednisone, literally s few hours after a dosage of 15mg....is that NORMAL?? everything I'm reading thus far has my response to pred as SUPER quick....
My response was in under 6 hours - some people respond that fast, others don't. Which is part of the reason I think there are various versions of PMR.
Google vit D deficiency - they can be similar to PMR but there are other things too.
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.
I started to feel a little bit better about six hours after starting, but didn't dare believe it. I think I was completely pain free by the third morning. The second night, I think, it felt like "things" were crawling around under my skin and thought if that was the worst pred side effect I could deal with it. But it has never happened again and I wonder whether it was the inflammation subsiding throughout my body.
good to know Eileen! and over the years, have you gone up/down in dosages? As you're well aware, (I think) I struggled at 1st trying to get off pred WAY too quickly and really messed things up! but since I've resigned myself to what I must do, I'm taking things much slower. have had minor flairs and bounced a bit up/down dosage wise...I'm still on 15mg till next week, when once again I'll try to taper to 14.5 and so on.... are you still on prednisone? and I will Google the vitamin D...thanks for your help!
hey Anhaga....ok, now I've heard of 2 folks having the same quick response to pred as I did. I too couldn't believe it as my Reuhmatologist told me not to expect results for at Least a day or so! funny you should mention the feeling of having something crawling 'round under your skin. I've been experiencing the same (still am) feeling myself starting mid-calve on down into my feet. it's very annoying and uncomfortable and makes me always want to move my legs and feet! it's not however, restless leg syndrome....I've had that before and this is different😕. seems it's always something....doesn't it??
i didn't get any response to prednisolone for at least 7 days - just shows how different we all are ..... am wondering about the two responses waiting moderation ! x
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??!!