I'm a GCA patient, having started at 60 MG in AUG 2022. I'm down to 12.5 MG today. I have felt lousy in so many respects including fatigue, vision issues, and GI problems since day 1. When the rheumy put me on Alendronic Acid a month of so ago, that was the "last straw." It made me feel even sicker and after a Dexa Scan showed "not too bad" t-scores (-1.6) I decided to stop taking the Alendronic Acid. Still feeling rather rotten, I started looking at the listed side effects of everything else I was taking and found that a culprit might be the 3000 iu's of Vitamin D3. Listed side effects are weakness, and constipation -- two of the symptoms I struggle with the most.
I stopped taking D3 about a week ago and feel noticeably better.
So here's my question. Is it necessary for ALL of us who have been on high doses of PRED to take Vitamin D3? Note: my tested D3 levels were perfectly normal about 6 months ago, and now that it's warmer outside I'll be taking plenty of sun -- about 15-30 minutes per day, asides from normal outside chores -- so wouldn't this natural way of getting D3 be just as good as taking pills?
Thank you!
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montebello
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"wouldn't this natural way of getting D3 be just as good as taking pills?"
It would and some people do have problems with vit D - I don't luckily as I take 4000 IU a day, without it my blood level slowly creeps down to almost single figures which isn't a good look!
My t-scores were at worst -1.6 pre-pred and I never started AA. And never have needed to start AA since I haven't yet had a result worse than -1.6.
However, as we age the skin factory gets rather rusty and at the age of 60 is producing about a quarter of what it did at age 20, If your skin factory is working - great. But it also depends on where you live. Latitude 37 is the level at which the sun is striking the skin at the right angle to trigger the production of vit D year round - in Europe that is Sicily, in the USA it is the southern border of Utah, Colorada and Kansas. Further north the possibilty declines. The further north you get - the less and it reduces to only between 11am and 3pm between May and September and even further north - practically none. Then it depends on the amount of skin exposed. And even around the Mediterranean many people are deficient since they avoid direct sun and wear quite a lot of clothes, And many, when they aren't covered up either use lots of sunscreen or have developed a dark tan which also reduces the effect of sun on the skin.
Interesting question and fascinating detailed response from PMRpro. I had my vit D levels tested recently - normal. I take 1000mg CalciD daily and live in the U.K.. I don’t have the symptoms you describe although I do feel weak after nights when sleep is not restorative - at least I’m getting some now and don’t have the 4.00 am steroid wake up call! If I bottom out after a poor night it takes a few days of careful pacing to get ‘up’ again. I think it’s probably a combination of the nature of the GCA beast and the tough steroid treatment. It can get very tedious can’t it? You never know what is causing what or what the next day/week brings.
You never know what causing it -- boy that's for sure! But if it's lack of sleep then I'm in deep, poo-poo. I RARELY get any more than 2.5 hours deep sleep a night (according to my watch). I don't have any acute pain at night, but just a general achiness stemming from my intestines and back. The Fosamax made it much worse. But, like you, I ALWAYS wonder whether or not my fatigue, etc. is being caused by the PRED or by the disease itself. I doubt I'll ever know. One day at a time. Thanks for writing
I am in the same boat. My watch says I get anywhere from 0 - 2 hours deep sleep. But the 2 hours is rare. When I do get the deep sleep I feel great but those days are far and few in between.. I also deal with a CPAP machine which is uncomfortable and is not helping keep me stay asleep (deep sleep). I also take a Gabapentin 300 mg for RLS, so I can try to sleep longer.
It's good to hear I am not alone and thank God for this site....there is a wealth of info here that has helped me in the last year. Thank you all.
It’s when the deep and REM sleep is low I feel rubbish. I get a few good days then the sleep can be quite unrestorative if deep/REM is lacking. Seems I can’t do anything about it other than pace myself. I guess in my past life (never been a great sleeper), particularly when at work, adrenaline would kick in and I’d get on with the day. GCA and the steroids won’t allow that. I understand the logic but it’s frustrating. Deep restful sleep is so vital to recovery and quality of life.
I'm with you! I do take an hour nap each day, after lunch. And VERY RARELY I take a trazadone pill -- but those leave me groggy the whole following day. As for the nap, I often feel even worst after I get up from my nap! Oh well.
Probably - that is the ideal I suppose. Getting vit D measured in the UK and some other countries isnt easy though, or getting it done isn't too bad privately but the healthcare system digs their heels in.
You have already gotten terrific info!!! I'm just adding that my Vit D is monitored and I've been on it even prior to pred. As has been said....what is causing what? I will say I've never attributed a negative to Vit D...just me.💞 Keep the faith....it is a journey.😉
So glad it’s not just me not having a clue what is causing what! If I get deep restorative sleep I’m literally a different person. It’s a lot better than it was many months ago but I still can’t trust how I’m going to be.
Thx, I would just like to add that I have been taking D 3 5,000 iU tabs for about 5 years plus 1 IU fr my multivite and live in Florida and spend many hours in my gardens. Also have PMR 2.5 mgs Pred. Last week had many bad symptoms come on suddenly so I started googling the meds. Found out that there is a condition called VITE D toxicity and it had many of the symptoms I was having plus other meds , plus a possible PMR flare, So much for not knowing what's going on, I did eliminate the D 5,000 IU capsule and made some other med changes. So, I don't know to attribute what to what. But I did want to alert folks to VITE D toxicity as it seems Drs. are really into prescribing it now. I see my PCP next week and we'll see what he has to say. BTW I LOVE this site and all the fine folks who make it work. Thank you.
bonemaine, this is precisely the reason I stopped taking VIT E. I also read about VIT D toxicity and some of the symptoms sounded very familiar. Please share what your PCP says when you see him/her. Thanks so much
At the age of 69 (6 months before falling victim to PMR) I decided to make a concerted effort to have plenty of sun exposure in my garden for 10 minutes everyday. No problem as I live in Israel. When I had a blood test for PMR they automatically included vit D. It was very low...and I complained to the bone specialist who saw me (because I was on high doses of pred). He said that at my age I didn't make vitamin D in the sun.
Footnote to PMR pros wealth of wonderful info...the population of Israel has very low levels of vit D....everyone keeps out of the sun as much as possible.
Only from my perspective, I take 3000 mg. of D3 (one pill includes K2 (MK7- thank you Pro). I have many things going on the go right now, but I've been taking this high dose since Jan. '22 with no issues. I do not take a Calcium supplement but there are Tums or Rolaids or a store generic brand of tablets which contain 1000 mg. of Calcium. This I was taking, but ran out. I do get calcium from cheese and yogurt, so I don't believe it's necessary (for me) to take any more calcium. D3 is my "go to" and I also believe it helps me fend of many colds, flus and even Covid which I have not yet contracted. Knock wood.
Probably 10 years ago, my GP put me on a Vitamin D prescription, possibly because it was a bit of a fad at the time. Recently, my endo did a blood test and saw that I had elevated levels. We nixed the prescription for the common calcium / vitamin D combo. I don't think at any point I noticed signs of fatigue - other than the normal fatigue that comes with autoimmune diseases, lowering pred, etc.
Thanks winfong..... the main "side effect" that caused me grief was constipation and GI issues (nausea, bloating). I'd say that I'm 75% better along those lines after stopping the VIT D supplements. Based on all that I'm hearing here though, I might go back to a lower dosage (maybe 800 instead of 3000 iu's a day. But only after being tested for VIT D via a blood test. Thanks again
Ah well, I've got IBS and diverticulitis, so have learned how to deal with that issue over the years. It's always seems to be in bad shape, so never noticed if vitamin D had anything to do with it or not.
Very interesting topic and good advice from all, esp PMRpro. When I read some of the side effects for AA (Fosomax), I declined even though my rheumy was not happy. 15 yrs ago a wise Internist advised me that we all should be on 2000 Vit D (live in Canada) and have done so ever since. Advised my other half and family members to do the same. There are worries with calcium supplements so try to get most of the requirements through diet. I think you have done well in using your own common sense, and listening to your body. It is not an easy row, but at least you are up and around. The side effects of the Pred do seem to linger but we keep pushing on. Some of the best people are on this forum and have experienced it all. Good luck and carry on. (my hubby doesn't sleep well either, so perhaps it is more common in males).
I kinda feel like you about taking D3. My Rheumatologist insisted I take 1500mg twice daily. My stomach couldn’t tolerate that much, so I’ve halved dose and take just once a day. So far, so good. Once Summer starts, I’ll stop talking it. My last bone scan, was borderline, at 74, not that surprised. We all know how our bodies feel and if something is not right. I think, that’s my guide to going forward. I hope you find a way. I really do and wish you all the luck in the world, going forward. This disease is a weird one. The insomnia every couple of days and waking up at 2:30 wide awake is a real pain. No reason to it. This forum is an amazing tonic, knowing that we’re all going through this, helps even more so, in the middle of the night, when one is at their lowest ebb. Stay strong.
Thanks Golden! You stay strong also! I have an appointment with my rheumy in a few weeks, and I already know he'll go ballistic if I tell him I've stopped the VIT D. He had a fit when I told him I've stopped the Fosamax. I'm sure he's a good rheumy, but he tends to think that treating GCA is a "one size fits all" sort of thing -- and he goes thoroughly nuts when I mention this forum. He rolls his eyes. I'm with you -- this forum is the best thing that could have happened to us who are struggling with these diseases. Thanks for writing
I take K2 and D3 (3400 iu) daily along with calcium and magnesium. I found I had GI issues that were improved when I changed out the variety and dose of my magnesium. It takes some detective work to figure it all out.
I also get my Vit D checked annually (more than that I have to pay for the test). Over the past 5 years it seems that my current consumption of D3 is good.
Found this on the Mayo Clinic website.. appears toxicity is in extremely high doses..
Taking 60,000 international units (IU) a day of vitamin D for several months has been shown to cause toxicity. This level is many times higher than the U.S. Recommended Dietary Allowance (RDA) for most adults of 600 IU of vitamin D a day.
Doses higher than the RDA are sometimes used to treat medical problems such as vitamin D deficiency, but these are given only under the care of a doctor for a specified time frame. Blood levels should be monitored while someone is taking high doses of vitamin D.
As always, talk to your doctor before taking vitamin and mineral supplements.
That is mostly the case but there are some people who for some reason develop very high blood levels very quickly. There is also the possibility that the doctor has his numbers mixed up - I only ever trust the actual numbers on the lab report!!!!
My first blood tests when starting my PMR journey showed that my Vit D levels were low so have been on docs prescribed 800iu/day, and after the various posts here, I also take a combined Vit D 4000iu and K2, instead of the 800iu about once a week. My last blood tests, this year, showed my Vit D at normal levels. As far as I know I've not had any side effects from Vit D. I don't take any extra Calcium as I reckon my diet gives me all I need.
Just to add - any doctor who thinks the 800 IU a day in AdCal will replenish the vit D leevl in someone who is deficient is in cloud cuckoo land! It isn't even enough for the daily requirement.
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I did eliminate the D 5,000 IU capsule and made some other med changes. So, I don't know to attribute what to what. But I did want to alert folks to VITE D toxicity as it seems Drs. are really into prescribing it now. I see my PCP next week and we'll see what he has to say. BTW I LOVE this site and all the fine folks who make it work. Thank you. 
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