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
lynda62707 missmagwumps
Posted
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!
EileenH missmagwumps
Posted
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.
ptolemy missmagwumps
Posted
What reading have you got? Mine was 26 and I just had PMR pain.
missmagwumps ptolemy
Posted
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
lynda62707 missmagwumps
Posted
I've got 2 questions....
everything I'm reading thus far has my response to pred as SUPER quick....
EileenH lynda62707
Posted
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.
Anhaga lynda62707
Posted
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.
lynda62707 EileenH
Posted
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!
lynda62707 Anhaga
Posted
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??
missmagwumps lynda62707
Posted
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
EileenH lynda62707
Posted
Yes, I've been on pred for over 9 years - I appear to be one of the 5% who has PMR for a very long time, sometimes for life as I have had symptoms for over 14 years. And yes I have been able to taper to a lowish dose, the lowest was 4mg for a few months but then I had a flare in disease activity and had to go back to 15mg to manage the symptoms. Over the years the symptoms of a flare have changed - or at least the first to appear have remained similar, wrist pain and trochanteric bursitis for example, and then other things appear, The deep hip bursitis is a much later symptom now. Usually I am able to get back to under 10mg in about 5 or 6 months. A big flare seems to happen every 3 years or so.
margaret22251 EileenH
Posted
just thought i would let you know i was speaking to a lody ysterday who said she has been on pred for thirthy five years, ive a lot of catching up to do
lynda62707 margaret22251
Posted
hey Maggie, I'm not looking to TRY and catch up with that much prednisone.....😷
EileenH margaret22251
Posted
Probably not for PMR though?
margaret22251 EileenH
Posted
No, i believe it is some sickle illness, could not repeat the long name