Vitamins /Supplements & PMR

[Boss302Fan]

Sorry this is verbose...

My head is spinning reading the research and contradictory findings it’s enough to drive one mad. However below is what I take now to help offset bone damage.

From my past experience with Vitamin C & E I believe overall it to be beneficial as it’s the only reason I can think of for very rarely getting a cold (much less the flu) and when I do it’s not bad and gone in 3 days. I also don’t believe it negatively impacts PMR. It bolsters the immune system, not activates it. But that is my interpretation and opinion only and I’m no Doctor.

So far doing 16mg to 14mg via DL’s Simple Taper on week 4 and having no indication I even have PMR (i.e., no pain, etc) therefore I’m going to start my DL taper new dose of 12mg this Sunday and see how it goes. Depending on how I feel during this taper I may attempt another 4wk taper to 10mg which then I’ll use the full 5 wks + 2wk hold (maybe longer) before starting toward 9mg. That’s as far forward looking I’m willing to do at this juncture.

Back to the Vitamins: here’s my routine, it will be interesting to see if my Rheumy will support my plans. I’ll find out on Monday.

8:30 AM: take prescribed Prilosec

9:00 AM: Vit E mixed tocopherols (134mg total) + mixed tocotrienols (16.6mg total) all 4 fractions (a,b,g &d) present in each.; D3(2000 IU); K2(50 mcg); Ubiquinol(100mg); 1MD Probiotics Premium - all taken with milk and food

10 AM: 1/2 of total daily Pred dose

Noon & 6 PM: Calcium (as calcium citrate) 500 mg & 350 IU D3 (note this a 1000mg/700 IU tablet cut in half) - taken with milk

7 pm Dinner - also take D3(400 IU)

8 PM: B12(500mcg); C(500mg); Zinc L-methionine(30mg); Folic acid(800mcg) taken with water

I’m considering replacing the Folic acid with Folate 5-MTHF based on most recent publications that are negative for the folic acid form I’m currently taking.

You’ll note my total Daily D3 is 3,100 IU) which is under the 4,000 IU max daily suggested. I don’t know how much I get via diet or sun exposure. I’ll ask it be looked at when next blood work is prescribed.

I’m not currently taking any Mg or Cu supplements.

10 PM Second half of daily Pred dose

Physical activity: I wouldn’t say I’m pushing it, but I have been doing normal things but just taking my time doing them. Yesterday I spent a good deal of time under my car changing out various lubricants, followed by walking the 2 sides of an acre field marking where 30 fence posts will need to be driven and lastly, going to the store and loading 36 5” dia x 8 ft wood fence posts in my truck. Today took it easy and went to see a movie and I feel fine! Tomorrow do some light work on the car (about 1 hr) and Sunday will be driving those posts into the ground with a hydraulic post driver on my tractor. While in the past I’ve done more than twice this number by myself, I’ve elected to have a friend help me. I don’t want to push my luck.

I consider myself fortunate. When I did have a flare up when last at 10mg it was at most a 5-6/10 on the pain scale and went away as long as I was up and moving. If sat or drove the ache would creep in the back of my thighs (hamstrings). I could have lived through it, but the thought of a potential rapid relapse to the sharp pain of 10/10 I had once experienced caused me to kick up the dose.

I’m hoping that the relapse a little ove a month ago was due to 2.5mg drops every 21 days with no taper as before for 24-48 hrs after each drop I felt “off”. Since doing 2mg with DL’s simple taper I feel no different as I decrease. Also, I’m thinking splitting the dose may be helping as well since I’m giving myself a boost before going to bed. I also no longer feel any discomfort first thing in the morning.

[Blearyeyed]

Thanks for adding this with lots of information , it's seems like you are creating a well balanced schedule for yourself listening to your body and adapting your self care accordingly .

You are being proactive which is positive , but also realise that a time table , especially when tapering needs to be flexible and based on the body response not just the guidelines.

You are also being sensible in taking immediate steps if you know you have pushed things to far and are Pacing yourself in line with your abilities , so you're research is paying off.

It's good that you take your Calcium separate from your other vitamins and medications because it can reduce your absorption of medications , and especially nutrients like Iron , Zinc and Magnesium.

My only tips are , taking your vitamins with food , mid meal , and with some Vitamin C help you absorb the most from the dose you take , but I think you are doing often anyway.

And Magnesium , Selenium and other minerals are also very helpful for reducing future problems with Neuro Pain or any skin issues.

Keep an eye on your skin using all the car chemicals and doing maintenance , even with the vitamins , skin with steroids can injure more easily and take longer to heal , so although you may not have done so before , using a bit of zinc based cream on your hands before and after doing work , and after a shower on the body in general can stop these injuries happening.

It would be great to here back from you with updates as you go along so we can see how your regime is helping you succeed in your recovery.

[Boss302Fan in reply to Blearyeyed]

Thank you. For years I did work bare handed I now wear nitrile gloves or use a barrier cream. I’ll look to see what its ingredients are.

[Hidden in reply to Boss302Fan]

Do you have mustang? It must be hard working on a car with pmr. My back wouldn't let me bend over the engine compartment. And the most I can do is fill up windscreen washer!

[Boss302Fan in reply to Hidden]

Yes. I have a 2013 Boss 302 that I play with the one on my profile is me at the track. I'm always improving it.

[Blearyeyed in reply to Boss302Fan]

My uncle puts moisturiser or Vaseline about ten minutes before putting his gloves on now too to stop drying out and rubbing when he works on things because he found his hands cracking more with the various medications he is on.

[Hidden]

Hi boss302fan, that a well organised routine. I was a bit worried about pred at 10am but then saw the later dose too.

That does sound like a taper that would bring about a flare. The picking up of fence posts made my arms hurt. The lowering of intensity if activities can be the best way to keep those muscles working without damaging yourself.

The horrible feeling 24 to 48 hours after a reduction sounds like steroid withdrawal. If it's manageable that's great. I just had to take otc painkiller for a day or two. It's good to recognise your withdrawal pain and a flare if the dose too low. The latter usually kick in after a week or so. My withdrawal sign was pain in my right shoulder. A flare used to start in thighs but now in feet. I split my e dose too and morning are better now.

[piglette]

Hi Boss, have you had your vit C levels and folate checked? You may find that you don’t need those supplements. It seems that a lot of money is made by the supplement companies selling to people who do not actually need some of them. I think if a doctor recommends a supplement though we should take them.

I have never taken extra vit C, I have never had flu and had a cold only twice in the last forty years. I had never had an antibiotic or taken paracetamol in my life until I was diagnosed with PMR four years ago. Some of us are just lucky.

[Hidden in reply to piglette]

I was reading something a while back that vit c helped and I thought it might be good to take. Apart from potential in uptake in iron, is there anything pmrish you can think it's taken for. I bought the vitc but don't want to take it until I remember what it was for! Brain fog or what.

[piglette in reply to Hidden]

If you take too much vit C the body just passes the excess out, so buying vitamins can give you very expensive pee!! I remember the days when giving blood they used to give you iron tablets, they seem to have stopped that a while back.

[Hidden in reply to piglette]

I hate it when info slides through my brain! It must've been some tho g as I don't just try vits without feeling its a good idea as I am veggie.

[PMRpro Ambassador in reply to Hidden]

A study found that high dose vit C helped reduce the number of colds in competition-level athletes - but not Joe Public!

I believe there is some evidence that too much vit E as supplements isn't good. I assume I get enough of both in my diet!

[Hidden in reply to PMRpro]

Cheers. It not like me to. Spend money on stuff like that. Oh well... 💵🤣🤣🤣

[Blearyeyed in reply to Hidden]

Yes , Vitamin C does help in the uptake of iron and magnesium . It is one of those supplements that is worth taking with our conditions , just like Vit D , Calcium , K2 and Magnesium . It helps with nutrient absorption generally to have Vitamin C in the diet and improves liver function , can help in the bodies efficiency in removing Cholesterol , aids immunity, and is part of the vitamin complex that is good for your skin.

If you are on a low carb diet you can sometimes find it hard to consume enough Vitamin C at the appropriate times ( with meals) if you are reducing your fruit intake , so in that sense , if taken mid meal to give the supplement enough time in the digestion system for the maximum amount to be absorbed it is worth the investment.

There are a lot of supplements that can give us expensive wee , I often say this just like Piglette , but for me , Vitamin C isn't one , especially in the winter when we need the boost of immunity.

It might be of interest to you as a Diabetes sufferer . My OH had had a sudden resurgence of migraine headaches and Fatigue . He put it down to the weather and exam marking , but I pointed out that this had changed weeks ago but the headaches had only just popped up. Had a think , and he realised he hadn't taken his Vitamin and Magnesium supplement in the last two weeks . He started them again , three days in he's feeling better and the headache has gone.

I know some people may think it was a Placebo Effect , but as he was on them before and the timing works , I think it probably is helping him.

[PMRpro Ambassador in reply to Blearyeyed]

Though very large doses are a tad pointless as you can't store vit C, you pee it out straight away.

[Blearyeyed in reply to PMRpro]

Yes , I'm thinking in consideration of those whom maybe don't take a multi vitamin including vitamin C or have difficulty getting the higher recommended dose for immunity and chronic health support into their daily diet which can happen , especially in winter , on certain diet systems .

I'm like you , I try myself , then if it doesn't make a medically or symptom significant difference to how I feel or function I don't take the supplement . Increasing my Vitamin C , I found at meal times , has reduced the recurrence of anaemia and folic acid lows that I was having despite having a good balanced diet. It has also helped while suffering with viral infections and with my recovery time after trying an increase in it more than just fluids and paracetamol alone . I'm doing a Cholesterol reduction trial at the moment ( the OH has stepped up as my next victim! if results are good ) and the bloods I get back next week will hopefully prove the results of what I was doing .

When I have my figures I was going to write a post about it , but Vitamin C was part of the plan of Cholesterol Processing because of it's effect on Liver function , so I'm living in hope.

You do have to be careful about taking it through the day and with your meals not just in one big dose , or then , as you say , you just end up with expensive wee!

[Boss302Fan in reply to PMRpro]

This was back in the mid-70s. My father came down with RA when he was 43yo. I “think” Gold Salts was the most prevalent treatment and not very effective with him. There was research showing benefits of taking ultra high daily doses of vitamin C. They increased his dose over time until he got diarrhea, then subtracted 500 mg (if my memory is correct I think he was on 7g / day, don’t remember all at once or split up). Later he was accepted into a study group when MTX was just coming out. He had to sign a waiver and got weekly blood work. MTX was a godsend for him. He also had to have metatarsal bars put on the bottom of his shoes and routinely get cortizone injections. Eventually because of pain and flareups he retired from the government at age 54. He said the Vitamin C helped him. Whether it was a placebo effect or not we’ll never know. I take 500mg daily and start multiplying how often during the day I take it depending on having infection. I’ve had Doctors and Pharmacists tell me that’s a good plan and I’ve had Doctors and Pharmacists tell me it doesn’t help.🤷🏼‍♂️🤣 Since Vit C is eliminated in the urine and has virtually no toxicity, I figure what do I have to lose other than a few cents per day.😁

[Boss302Fan in reply to piglette]

No I haven't. I've chosen to take the Vit C & E based on papers I've read over the years. There is a controversy, some say it helps others say it's a myth. I believe it helps.

Also the Folic acid was recommended by my Gastroenterologist.

[Boss302Fan]

True about the Vitamin E. The recommendation is not to take more than 400 IU and also better to take the ones that have both the Tocopherols (Alpha / Gamma fractions most important) and Tocotrienols. What I'm taking now is less than 200 IU. Vitamin C is a strong antioxidant and high levels (I'm talking about >5000mg/d has been demonstrated to help RA suffers, but this needs to be done through a physician. You know when you reach your threshold if you get diarrhea. Vitamin C & E also helps tie up free radicals. I understand there is controversy but I'm willing to urinate the excess. LOL