Supplements for PMR ?

[GMA74]

So many suggested supplements for PMR. I take B12 , D3 Calcium and magnesium . Reading that Biotin is good for hair thinning and loss , which I am now experiencing .

Any advice and dosages would be appreciated

[piglette]

I try and ensure that my diet gives me the nutrition I need rather than taking supplements. I do take vitamin D with calcium as it is prescribed. Has it been suggested that you take vitamin B12?

[GMA74 in reply to piglette]

On B12. Not suggested by provider. I find medical providers not big on supplements other than D & Calcium

[piglette in reply to GMA74]

Possibly because most of us don’t actually need supplements!! If you have too much B12 you just pee it out. That is not always true of other supplements though. They reckon 96% of supplements sold are superfluous to our needs.

[darkred in reply to piglette]

Speaking of supplements, does anyone take curcumin, an antiinflammatory, I believe?

[PMRpro Ambassador in reply to darkred]

Only piglette and a couple of us will see your question here in the middle of a thread. I know people who use turmeric/curcumin in cooking and swear it helps, as does garlic too. Taking it as a supplement is a much higher amount and can cause stomach upsets and increase bruising and bleeding due to pred. It is also contraindicated with some drugs.

[darkred in reply to PMRpro]

Garlic can increase bleeding, depending on amount. There may be no cause for alarm unless one is on a blood thinner. The same may be true for curcumin. Before taking supplements, we have to check about interactions with any meds we are taking. It is best to take curcumin with a meal to avoid stomach upset. Start with the lowest possible dose to see how it affects stomach.

I need to clarify:

Curcumin probably does nothing for PMR. I also have osteoarthritis and I suspect many people on this forum may have arthritis as well. Some may have "back aches." I believe curcumin may help alleviate pain for these conditions. We know that prednisone is absolutely necessary to combat the inflammation and pain associated with PMR. We also know that some pain may not be a "flare" caused by PMR.

Yesterday, in doing some housework, I overdid the use of my left shoulder (the one with severe osteoarthritis, "loose bodies," etc.) I think the curcumin curtailed the "overuse" pain, something we feel when our muscles and joints are not accustomed to a particular activity. My supplement (one capsule) gave me 36 mg of active curcuminoids. The bottle states: Take with meals. It also has the usual warning about consulting with doctor.

[PMRpro Ambassador in reply to darkred]

It isn't me you should be telling this! However, since we are all on pred, it increases bruising and tendency to bleed, any such supplements are likely to make it worse.

[DorsetLady PMRGCAuk volunteer in reply to darkred]

As PMRpro says -best used in cooking

[piglette in reply to darkred]

Dr Michael Moseley did a radio programme on curcumin. They had done a small survey on the tablets and he said you were better off cooking with it. I actually went to Trading Standards once as a company was advertising Curcumin (turmeric) tablets as a cure for PMR. I won!!

[darkred in reply to piglette]

Unfortunate that curcumin was touted as a "cure." We know it is not a "cure."

[PMRpro Ambassador in reply to darkred]

Um - no, I wouldn't use the word "unfortunate" - I would use something much stronger!

[Kendrew]

Hi GMA74,

There has been much research around the effectiveness of taking oral supplements but unfortunately the majority of findings always indicate that most have little, if any, significant impact on improving our health.

It's also a well known fact that we absorb our nutrients far more efficiently from their food source rather than from a supplement source.

A possible exception to the rule is Vit.D, and this is now thought be a worthwhile consideration.

Obviously there will be some situations where a health condition requires the taking of a supplement, such as folic acid for pregnant women or Vit.B12 for pernicious anaemia, etc, but generally it is always recommended we try to promote a healthy body through a healthy & varied diet.

I, like many others have experienced hair thinning whilst on steroids but have definitely improved the condition of my hair and encouraged regrowth through my diet:-

- Eggs.....full of protein & biotin

- Seeds....packed with Selenium, Zinc & Vit.E

- Avocado.... full of Vit.E

- Oats....high concentration of iron, zinc, omega-6 fatty acids

Spinach- rich in iron, foliate, Vit.A & Vit.C

All of these foods (& many more) provide essential nutrients for promoting a healthy scalp and healthy hair but it doesn't happen overnight.....it will take several months for you to notice any improvement.

[Stills in reply to Kendrew]

This is good to know about hair. I’m med free for Stills except pain relief but taking omeprazole these last 5 months for undiagnosed something ( my money is in thyroid- hashimotos) and I’m losing my already thin hair. Luckily I love nuts and seeds and avocados 👩‍🦲

[Sophiestree]

Be careful with Biotin supplements as they can skew blood results. Or stop taking them a week before you have any scheduled blood tests.

[Sunshine8651 in reply to Sophiestree]

Do you know what Biotin skews on the blood test? My last labs we done while taking Biotin.

[Sophiestree in reply to Sunshine8651]

I was told - Troponin (heart), Thyroid -TSH, T4 and T3, PTH (parathyroid), cortisol, FSH (pituitary) , LH (anterior pituitary) and Vit D - but don't quote me as I am not 100% on any of it. I think if you stop taking it a few days before a scheduled blood test then it should be fine, if done in an emergency situation it would be advisable to tell the medics. PMRpro might know more about this.

Also I don't know how much of it you would need to take for it to affect some bloods more than others. Just better to be cautious if at all possible.

[GMA74 in reply to Sunshine8651]

I’ve not started biotin and think I’ll hold off.

Since I’m on Kevzara I’m having a lot of blood work tomorrow. Definitely don’t want to skew results. Thankyou

[GMA74 in reply to Sophiestree]

Thankyou. Think I’ll hold off on Biotin based on everyone’s input

[PMRpro Ambassador]

Other than the vit D/calcium and magnesium I don't think you need anything other than a good diet, reasonably low in carbs.

There is a multi-million business based on persuading the gullible that everything can be blamed on nutritional deficiencies when in fact deficiencies are generally localised or due to poor/restricted diets. For example, vegans need a source of B12 as the usual source is meat, fish, eggs and dairy - marmite does the job, in cooking if you can't bear it on toast.

Hair loss - it all depends on the cause and it is rarely a nutritional deficiency. Most systemic illness will result in some increased hair loss - and since most people experience seasonal hair loss, if the two coincide, it may look more dramatic. Systemic illness often doesn't cause immediate hair loss, it is mainly a few months later.

Me? I save my money and spend it on better food.

[GMA74 in reply to PMRpro]

I tend to agree. Thanks for all the input .

[darkred in reply to PMRpro]

I now use Vitamin K to keep calcium from calcifying my blood vessels. I didn't learn this until approximately 8 years ago, and I've since learned I have mild aortic stenosis. Have been taking calcium supplements for years, along with Vitamin D and magnesium.

I think supplements have their place, as long as one becomes knowledgeable about interactions, side effects, results, and where they are made.

Having confidence in the maker of a supplement is key. I try to use NOW products because they are produced locally; they don't come from China. I'm fortunate to have a great health food store a short distance away, not far from the NOW producer of supplements.

I do believe some supplements by certain companies are adulterated and could cause a problem. I'm not confident about buying from amazon, though that might be some people's only choice.

Another concern: I wonder how many supplements have ingredients from China.

For a few weeks, I suffered from stomach pain and poor appetite. A number of drug store products were of no help. In desperation, I studied supplements for stomach pain. Have now been taking Slippery Elm with much success. I use a brand produced locally (it's not from China!). I make sure to take prednisone a couple hours away from the slippery elm, as the supplement can prevent absorption.

Unless one is a daily fruit eater, I think supplemental Vitamin C is sometimes needed. I may need to add that again but will get Vitamin C that is easy on one's stomach.

[PMRpro Ambassador in reply to darkred]

"I wonder how many supplements have ingredients from China."

Or India. Most of them ...

Never mind fruit - bell peppers are a far better source of vit C - one yellow pepper has nearly 4 times the RDA. One tomato has about a 1/4 of the daily requirement, a cup of broccoli has a full RDA, same for sprouts.

[darkred in reply to PMRpro]

I cook all meals and bell peppers (esp. red, yellow and orange) have added flavor and health to many things I made. I absolutely love tomatoes in any form, esp. in pasta sauce. Since going "cold turkey" from tomato sauce, my GERD (gastroesophageal reflux) has not bothered me. (I've also taken other measures.) Recently, I went "cold turkey" from my morning 1 1/2 cups of coffee.

Prednisone affects the stomach, so I've had to be more careful with what I eat.

As mentioned elsewhere, Slippery Elm supplement has been a godsend (for me) in getting rid of stomach pain, and thus improving my appetite.

[SnazzyD]

Your hair may well sort itself out. It is common for any systemic illness or stress to cause hair loss; I nearly went bald and have seen it as a nurse many times. It often occurs some months after the insult, it was 5 months for me. It grew back on its own over a few months after a rapid shedding over a couple of weeks. I”m not a fan of taking multiple supplements, especially the “this is good for x” specifically because who knows what it also affects on top of the desired target. I do take vit D and K2 (not K1) and Omega 3 as my diet has little of them.

Is your B12 diagnosed as being insufficient?

[darkred in reply to SnazzyD]

Glad you mentioned the K2. It's the only kind that's effective in getting the calcium into the bones. Without K2, calcium leads to calcification of blood vessels. This may not show up until one gets older.

[Broseley]

I took biotin gummies for about a year. No effect whatsoever.

[Holycow2]

I for one do not think people are Gullible for at least trying vitamin supplements! I had the same problem with hair falling out! Someone on here recommended trying folic acid as I think it was his wife suffered hair loss. I tried it and I can say it has definitely improved my hair loss!! Give it a go it’s working for me ! ….good luck!

[Amkoffee]

The thing about hair loss is that it can come from a variety of sources. There's the obvious illnesses that can cause hair loss and of course vitamin deficiencies that can also do that. That hair loss tends to be from the root and therefore you will find an actual thinning of the hair where you can actually see the scalp. Then there's hairs that grow without much strength and therefore they break easily. You're thinning hair could be from either of those instances, so your job would be to figure out is your hair falling out from the scalp or is it breaking off somewhere down the hair shaft. If it is breaking off somewhere down the hair shaft then a good conditioner when you wash your hair would be appropriate. If it's literally falling out from your scalp then it is more likely a health condition either from a lack of a vitamin or it could be alopecia which is an autoimmune disease. If you lack a vitamin then as others have said the best thing you can do is to get it from food and not for a supplement. But you need to determine why you have a lack of that vitamin.

[darkred in reply to Amkoffee]

Most older people (and some younger ones) are on one or more medications. Hair loss is a side effect of some medications.

[gaqke10]

"Your adrenal glands have a high concentration of vitamin C and require vitamin C to produce cortisol. This means your adrenals are using up vitamin C at a more rapid rate, and need extra replenishment, during and after periods of high stress." - Dr. Christina Sahni, Integrative Medicine

"The adrenal gland is among the organs with the highest concentration of vitamin C in the body. " - National Institutes of Health, Pub/Med

Vitamin C is essential for the production and modulation of cortisol. Look it up. I take 1000-1500 mg Vitamin C a day. No way you can get that from food. If you take more vitamin C than your body can use, it washes out, so no danger.

Also helps my gums.

[darkred in reply to gaqke10]

Very interesting. I went through a couple years of high stress, while omitting my supplemental Vitamin C and not eating well. PMR followed.

[gaqke10 in reply to darkred]

I've taken Vitamin C forever and still got PMR. Too much stress. Mine came when my husband and I retired and moved across the state after living in the same house for 43 years. I was completely exhausted by this.

If you want to help your adrenal glands re-awaken, try Vitamin C. Can't hurt!

[PMRpro Ambassador in reply to gaqke10]

"No way you can get that from food"

I'd dispute that - especially if you are a vegetarian. One coloured bell pepper and you are a third of the way there.

[gaqke10 in reply to PMRpro]

Most of our fruits and vegetables do not contain the amounts of vitamins and minerals listed. Between depletion of the soil and transportation and cooking issues, the nutrition is diminished. But even if the fruits and vegetables did contain as much vitamins and minerals as claimed, we still have to eat them. And most people don't. Besides that, different people need different amounts. Take vitamin C for example. If my husband takes less than 2000 mg vitamin C, his gums bleed. For me, it's 1000-1500 mg. Nobody knows the exact amount that your body needs on a given day.And Let's say his body uses 1800 mg and excretes the rest. Instead of calling that "expensive pee" we could call it cheap insurance that makes sure we get enough vitamin C. The excess is excreted with no harm to our bodies. Vitamin C is needed by the adrenal glands, so why not make sure we get enough.