Vit-D is a problem for RA patient!!: - NRAS


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Vit-D is a problem for RA patient!!

Amy_Lee profile image

I never know that Vit-D can be a problem to me as I have been a very active outdoor person and I love milk, eggs and oranges.

When I complaint to my rheumy that though I have been in remission for so many years, but I still can feel the difference in my joints especially my hands, elbows and foot. Then my rheumy suggested I checked my Vit-D level. The result was 26 ng/ml (insufficient). Now I am taking Cholecalciferol (Vitamin D3) 1,000 mg instead of Osteocap.

42 Replies

Hi Amy - hope all’s well.

Yes, vitamin D is so essential, I take 4000 iu’s. Or 100ug of a difference brand. However, you should take with Vitamin K2. I use a blend of both.

You state you are in remission, but have problems with your hands. Can you share what that looks and feels like ?- I ask as I have terrible joint stiffness and soreness in the mornings. I thought to be in remission means no pain.

All the best - Hessie 😌

Amy_Lee profile image
Amy_Lee in reply to Hessie5

Dear Hessie,

Yes, there has been no pain since I am in remission. I may be having too high an expectation to think that all my joints may be as normal. I do not have any joint damaged as I had been treated very early and achieved my remission after about 1 1/2 year treatment. However, unlike before I was sick, I still can feel that my joints are stiffer and weaker hence I asked my rheumy about my joints. They are not painful but certainly stiffer and weaker. May be I just have to accept that? I am not sure but I am trying to exercise and hope to make my joints stronger.

My rheumy did not mention about vit-K, thank you so much for the information, I will check with her on this and will also Google to be more prepared before my next appointment to talk to my rheumy.

By the way, how long already you have this RA issue? I am keen to find out more when you said that you have terrible stiffness and soreness in the morning. Do you mean there is no pain during the day except in the morning?

Hessie5 profile image
Hessie5 in reply to Amy_Lee

Hi Amy-Lee, so sorry for my late reply, been a busy week. I was diagnosed in November 2016. Hence 3 years in November. Since then all treatments a big fail. Now on my seventh or eight biologic.

Unfortunately, the damage got through - RA seems to thrive in me 😑. I have joint damage in my feet mainly. My hands appeared safe until 8 months where like a firestorm it spread.

I now have stiffness unable to bend my fingers in the mornings - they are also a bit sore and swollen at times. As the day wears on it gets better. Only in the mornings am I worse for wear. I should say I am not where I use to be in terms of pain, and using my bum to go up and down stairs - and crawling to the bathroom.

So overall, in a better place.

Hope all is well for you. 😊

Amy_Lee profile image
Amy_Lee in reply to Hessie5

Dear Hessie,

I am so so so sorry to know about your condition. Yes, if it is not in control, it will paralyze us really. I had gone through your stage and I am very lucky to be in remission just after about 1 1/2 year of treatment.

I remember I could not even get out of the car as my body was so in pain and it was so stiff. Once I sat down on the floor, I could not get up as I could not bend my legs and my hands were so painful hence I could not push myself up too.

When I could not make my fingers straight, what I did was I sat or slept on my fingers as much as possible to make them straight again. After many months, I did manager to get them straight again. Then the next thing I did was to force bend them invert by forcing one hand using the other hand slowly as I was still in slight pain and both of my hands were still very weak. Over a long time, slowly my hands were flexible again except still a bit stiff and weak.

RA patients have a very difficult life, so just take your time slowly. No need to worry too much to come in to reply anything. I can certainly understand that very well. Some of the days in the past, I was only on bed the whole day. I could hardly get out of bed.

I went to GP once to check vit D levels, she said go out into the sun, I explained about RA and low levels of vit D, she reluctantly then agreed to do a blood test, which came back okay that was last year

Amy_Lee profile image
Amy_Lee in reply to VeronicaF

From the information I read, RA patients generally will have low Vit-D level, I am very shock to know that your GP told you just to go out into the sun? I am from Malaysia, this is a tropical country, we have great sun around the year. In addition, I am an outdoor person who will be under the sun everyday for a while, I wonder why I did not have enough vit-D? When my rheumy suggested me to check my vit-D, I questioned her with this reason and she told me that RA might cause vit-D deficiency, since I complaint about the joints still feeling different after many years of remission, then she wanted me to have vit-D checked.

She was right, my vit-D is insufficient. She also said that Cholecalciferol is for replenishment purpose whereas Osteocap is for maintenance purpose. I cannot take both to avoid overdose of vit-D.

My Vit D is usually ok in summer as I spend most of the time outside (being careful of course!). But it plummets in winter and I am prescribed supplements.

VeronicaF profile image
VeronicaF in reply to helixhelix

can I come to your GPs helixhelix

helixhelix profile image
helixhelix in reply to VeronicaF

It’s my rheumy who orders the blood test and issues instruction to prescribe....

Hi Helix. Can you tell me how much UI does your doctor prescribe?

I think it’s 100,000 once a month. But it’s summer so I don’t have any at the moment.

Thanks Helix

Amy_Lee profile image
Amy_Lee in reply to VeronicaF

Dear VeronicaF,

I do think you should get a better GP who is knowledgeable about RA.

Amy_Lee profile image
Amy_Lee in reply to helixhelix

Thank you, helix for the information. How long do you spend your time outside in a day during summer? I spend about half an hour walking each day under the sun, but I still do not have enough vit-D.

helixhelix profile image
helixhelix in reply to Amy_Lee

I probably spend 5 hours a day outside. I sit outside, I eat outside and walk the dog for one or two hours. And because I don’t work full time I also have time to do a lot of gardening. I can’t sit in the direct sun, because my skin is sun sensitive, but I still get enough light during the summer.

Amy_Lee profile image
Amy_Lee in reply to helixhelix

Dear Helix,

You really spend so much of time under the sun, I am not able to do that as I work in an office. Thank you for the information, hopefully with the intake of the vit-D, I will be okay after a few months.

I had my bit D measured years ago. It was deficient, and since then I have been prescribed supplements, which definitely helped my pain and joints.

I believe that everyone with RD should be monitored for their levels. There are so many things we can't change with this disease, at least we can change this!

Amy_Lee profile image
Amy_Lee in reply to hatshepsut

The problem is we do not know enough to take good care of ourselves unless our rheumy tells us to do so. I never thought of vit-D and RA relationship until I finally read up last few days. Though my rheumy wanted me to do the test, I told her that it was impossible for me not having enough vit-D since I am in Malaysia and I am outdoor for at least half an hour a day.

I had awful head sweats and my local GP did bloods and next day called to say come and get your script of Vit d been on for 16 weeks now getting bit better but a little way to go.

J1707 profile image
J1707 in reply to

Are you taking viraminK2 as well Deeb2908? As vitamin is not absorbed properly without it.

Amy_Lee profile image
Amy_Lee in reply to J1707

Dear J1707,

Beside Hessie, you are another person who mentioned about the relationship between vit-D and vit-K2. Thank you so much. I need to Google on this and ask my rheumy why she did not prescribe me vit-K2 during my next appointment.

Amy_Lee profile image
Amy_Lee in reply to

Dear Deeb,

Is there any link between head sweats and vit-D? I sweat a lot too but I thought it is just normal after my morning exercise and during the day when I am under the sun. However, I always feel hot when my daughter says she is cold. I think I need to Google more on this too. Thank you for sharing.

in reply to Amy_Lee

Yes head sweats and Vit D can go together x

Amy_Lee profile image
Amy_Lee in reply to

Dear Deeb,

Thank you for the information, I need to Google on this also. We learn as we share, I certainly appreciate all these information.

I have it on my to buy this week as someone did mention this so written it down so I dont forget! For some reason I forget things cant think why...............

Amy_Lee profile image
Amy_Lee in reply to

Dear Deeb,

After I was sick with RA and having all these medicines, I too forget a lot of things. My children very shock to know that those great memories of them growing up together with me have gone too. When they told me about this and that, I always said sorry that they are just not in my memories. My daughter said that she will get the brothers to tell me more of those interesting memories together to put them back in me again.

So you are not alone. We are all together in this unfortunately.

Hi! I was told everyone who lives in the northern hemisphere needs to be on vit d. I’m dark skinned so this compounds the issue. I take 5000iu daily. I hadn’t heard about vitamin k2 so thank you!

Amy_Lee profile image
Amy_Lee in reply to Need2knowN

My rheumy only prescribe 1000 ut x 3 tablets at the moment, I have not been prescribed vit-K2 too. Great information to check with my rheumy too.

I started taking vitamin d and vitamin k, many years ago when it was discovered I was anaemic, and also Vitamin D deficient. I buy mine from amazon from Oxford Vitality, very good value. I've also started taking, vit. B6 and b12, d3and folic acid, all in one tablet. From Oxford vitality as well.

I just visited my rheumy 2 days ago and asked him about vit-K, he said not only when it is absolutely necessary as vit-K may give me other side effect. However, vit-D dosage has been reduced from 3000 iu to 1000 iu since Nov. I am so confused now, now sure what to believe. May have to do more research before I ask my rheumy again when I see him next in Feb.

Hi Amy Lee interesting I live in a sunny place but most of the time the uv is too high for me to be out in it for too long as have very thin skin from mxt. Will talk soon to my rheumy as she is generally against any supplements also ask to be tested for vit deficiency before I see her. Thank you all

Amy_Lee profile image
Amy_Lee in reply to Bhasvic64

Dear Bhasvic,

I am very surprised to know that I am insufficient with vit-D too. We have great sun here throughout the whole year, I use to walk under the great sun to work and lunch. I too always out during weekend for activities. I told my rheumy that it would be impossible for me not having enough vit-D. The blood test result proved me wrong!

Long ago I did ask my rheumy if I should have any supplements, she said NO!! We never know, you just need to find out from your rheumy if you need vit-D supplement. I will also find out the vit-K2 suggested here.

A valid point many forget!

I'm about to add more on this topic, if I can find the link I'm after.

I've been on AD CAL D3 for years. Is this the same? Its on prescription.

Amy_Lee profile image
Amy_Lee in reply to medway-lady

Dear Medway-lady,

I think it will be safer to check with your rheumy on this. I do not take anything without my rheumy's knowledge. I only take what she prescribes to me to be saved.

Hi Amy Lee Its a consulltant renal doctor as have kidney failure, he makes all the big decisions. Renal takes priority.

JFlay profile image
JFlay in reply to medway-lady

Hi, probably best to check with your renal people and/or your pharmacist. Adcal d3 is calcium and vit d3 so you may not need anything extra to that.

Amy_Lee profile image
Amy_Lee in reply to medway-lady

Dear Medway-Lady,

Ok, as long as it is prescribed by a specialist, it should be good because he or she knows your condition perfectly well.

Hi JFlay I was'nt going too. I take 12 tablets a day not adding more. although I know a presciption is waiting for hydrolonic acid. Onto biologics next at least the tablets will decrease. lol x

My vit d levels are ok, but I still take supplements, the levels were checked after I started supplements. Living in Scotland we don't get a lot of sun, so I'm happy to take supplements.

helixhelix and Bhasvic64 both touched on an important subject.

We suffer from autoimmmune diseases.

The meds we take suppress our immune systems.

Part of that immune system normally protects us, to a degree, from the harmful efects of the sun.

Below, a related article that I 'liberated' from someone on this platform.

I was going to put it back, honest! LOL!

I can't recall who they were, but I'm sure they'll remind me and I can credit them.

The article is not a long article, but it's fascinating.

Sunburn, your body remembering previous sunburn...the meds that bring it all about.

I didn't know about vitamin levels until my doctor said I was low in zinc and vitamin D. I am on Cholecalciferol too.

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