Hello there. Is anyone else out there taking supplements for their rheumatic diseases? I have been diagnosed with fibromyalgia, osteoarthritis, inflammatory arthritis--probably RA, possibly lupus. I am giving myself the MTX injections, take folic acid 5 mg., hydroxy chloroquine, Celebrex, Prednisone 5mg. daily, and pain relievers. I also take a quantity of supplements which my rheumatologist and NP approve of and review with me. This is new for where I live here in the states. I approached a dr. about taking fish oil 18 years ago and was told it would only make me gain more weight. Not so! The health benefits of fish oil are now very well known. To myself, I have proven it is of great help to my joints. I also take grapeseed extract, turmeric, calcium/magnesium, and cinnamon capsules daily. I'd love to hear what supplements anyone takes in addition to their medications. Thank you!
To take supplements or not to take them.... - NRAS
To take supplements or not to take them....
Hiya mamainacroud. I'm in the UK & have RD, OA & CS & take basically the same meds as you, though no longer take hydroxychloroquine. They differ in composition slightly - I take etoricoxib rather than celecoxib (although have had celecoxib in the past) & deflazacort not prednisone. I don't take "health vitamins" as such but I am prescribed Adcal-D3 (a daily chewable calcium/VitD3) & a bisphosphonate (weekly) as I'm osteoporotic borderline osteopenic.
What's beneficial in the way of supplements seem to change as times change & more research is done & admit I have tried cod liver oil before but to be honest noticed no significant benefit so stopped taking them. Having said that I do try & eat oily fish once a week! It seems there's always one vitamin, mineral or supplement that's in vogue for a while & then found to be of little or no benefit so the jury is out with me on the whole. Similarly with probiotic yoghurt drinks which flew of the shelves when they first came onto the market & have been proven to be of little or no more benefit than live yogurt which is far less costly. I prefer to take my vitamins within the choices I make in my diet, which is mostly a Mediterranean one with the odd cheat now & again (well we have to eat choc don't we!!!). My GP is very much a scientific doctor & poo poos anything not drug related, even the arnica gel I use for my bruises she says "if you think it helps" so guess I'm guided by her to a degree so never broached the subject with my Rheumy. Of course some may advocate them & some may not, it depends on their point of view, so if you feel the ones you're taking help & your Rheumy says ok then who's to say it's right or not if you feel better on them?!! I think the main thing if one wishes to try such supplements is to consult with your Rheumy as you have just in case any have adverse reactions to the drugs we need to keep us upright & moving. For example some benefit from extra calcium but others, if they go to extremes, may cause cardiovascular issues if it's not necessary for them, so always best to be tested to check what your levels are, whichever the supplement you're considering.
My RD is controlled with my prescribed mix so I don't take anything other than is prescribed for me. Not only that, if not of any significant benefit they could turn out to be quite an unnecessary expense & why spend money on something that may not work when that money could be better spent on chocolate & handbags lol! 
Hope my (rather long) answer helps.
Thanks Nomoreheels. Yes, we must have our chocolate! I too have borderline osteopenia. I take Vitamin D everyday and periodically take heavy prescribed amounts. Seems to make little difference. I am listening for the report that says either we have little vitamin D because we have rheumatic diseases, or we have the diseases because of too little Vitamin D. A few years ago, I came back from a month at the beach and tested low with my lab work for D! And now the sun doesn't seem to agree with me. If we must wear sturdy shoes, then certainly there should be new purses and chocolate! Take care!
If you're only prescribed VitD & need to up the dose at times it may be worth asking for a more regular higher dose with calcium & even a bisphophonate with you being osteopenic. It's worth trying anything to preserve bone density I've decided, especially as I'm taking long term steroids. You can only ask if your Rheumy would agree it would be of benefit to you.
I don't normally rely on this particular website but a member in the US wasn't able to open one a UK link I sent recently but this may help you webmd.com/rheumatoid-arthri...
I am surprised that a month at the beach showed low levels of VitD in your tests. Even more so as my Consultant in Spain prescribed 20 mins a day unprotected sun, dependant on the time of year of course. Bear in mind that MTX can be problematic with the sun though, I find I have less tolerance of heat now & can burn easily even though I'm not particularly fair skinned & have always tanned easily.
As you might have guessed my weakness was shoes before my feet disagreed & have transferred my passion for them toward handbags, much to my h's disappointment!
Ah yes. My shoes are very orthotic and matronly-looking now. Currently on a clothes binge as I spent so many years in dumpy maternity-looking duds. I decided not to wait to lose the weight and buy pretty clothes. I need the color and fashion now, especially with the way my life has changed with this disease that constantly demands attention.
As far as calcium, I do take the recommended dose of that in a preparation with magnesium. It's over the counter here. From what I understand, osteoporosis is more of a problem of those with a smaller framework (alas, no danger for me there). It is my intent to increase my activity level and build bone mass.
I'm finding it interesting to read the posts from this site. Treatment for RA seems to be in many ways the same in our two countries, but I am learning new things from here. Hence, my question about the supplements. We are grateful for our health care professionals, but still must do what we can to gather information and be part of decisions that effect long term health for the better. Keep up with the handbags! It means you are going places to carry them! mama
The more I read of members from the US's experiences of treatment it does appear there are subtle differences, though the drugs remain the same on the whole. Certainly my experience of treatment in Spain differs from the UK but I think the main difference, if I understand it correctly, is of introducing supplements to take alongside which I am unsure is wise but that's just my preference if I'm honest. I know you're not thinking to replace your meds with them but I wouldn't wish to go the natural route totally as some do for fear of the fact there is no written evidence to support their efficacy in controlling the degenerative nature of RD versus traditional drugs but do appreciate that is personal preference. They may have a role to play in those with joint problems but RD has a habit of biting you on the bum & reminding you it's so much more than that!
When all's said & done it is your body & if you think the ones you take work & you have the ok from your Rheumy then happy days but then maybe I'm fortunate that the meds I take are controlling the RD & the pain I have presently is down to OA & CS so prefer to take the meds for those which I believe ease the symptoms rather than going the supplement route which may not until something is proved to work as well as traditional drugs to rid me of that pain.
If you're borderline osteopenic then maybe your Rheumy wouldn't necessarily choose to offer you a bisphosphonate at present. I'm borderline osteoporotic so unfortunately at more risk, hence the necessity for taking it. I'm also small framed which may have an influence but that's never been mentioned as a reason!
The shoes I have now certainly aren't the ones have chosen before but comfort overrides style nowadays as my feet can be problematic! The trouble I have is finding ones pretty enough that my feet won't object to when I'm poshed up to go out!!!
Hope you're ok today & the sun's shining where you are.
You should take a look at widerfitshoes.co.uk My Podiatirst gave me a catalogue and I have never looked back. So important to wear nice 'comfy' shoes.
Thanks for that but I'm settled with the make I have as I need a squishy sole & I've tried so many different makes & nothing comes near to beat the comfort. I've got over the "matching an outfit stage" now since happy feet give me a happy face which to me is more important than looking the part & being miserable lol!! I've even gone to functions in my comfies & changed into nice shoes when we arrive but it's just not worth it, to me anyway!!
I am in Calif. I am on Hydrocloriquin (since Dec 2013), MTX (since Jan 2014, and Humira (since May 20). Was on Prednesone for all of April but haven't had to take any anti-inflammatory drugs again since April. Taking supplements since February 2014. I also take mega doses of the Omega's as well as A, B complex, C, D, E. I bought a book entitled "The Inflammation Syndrome" by Jack Challem. And his research on Gamma-Linolenic Acid (GLA) taken along with Omega 3 has shown positive results with RA and reducing inflammation. Omega 6 has inflammation properties so I take less of that and more of the GLA and Omega 3. I believe it has really helped me. All my blood counts are down to normal now but my RA dr thinks I need to stay on the heavy drugs for a few more months and she'll reduce some to see how I do. My last visit with her, she said I also have OA as well as the RA.
Quote from Inflammation Syndrome: "Although GLA is part of the omega-6 family, it supports anti-inflammatory compounds in parallel with the omega-3's." "A daily GLA dose of 100 to 200 mg should be adequate for most people and, again, it is important to take both GLA and fish oil supplements for their dual anti-inflammatory benefits. If trying to resolve an acute anti-inflammatory condition, such as soft tissue (tendon or muscle) injury, increase amount to 300 to 600 mg daily and inflammatory disease, such as rheumatoid arthritis, strive for 1.4 to 2.8 grams (1,400 to 2,800mg) daily, which is what the studies have found to be effective. You can likely achieve equal or greater benefits, however, with smaller amount of GLA combined wit omega-3 fish oils."
I started with the high doses but now I take the 300-600 daily and feel like it really helps. I'm back to weekly swing dancing and playing tennis. I get out of bed every morn with no pain or trouble moving joints. It could be that the meds finally kicked in but I think it's a combo of both and its not hurting like I was for months. The RA doc said she doesn't care what I take for supplements and said she "doesn't know anything about anti-oxidants Vits so can't advise you", she just wants me to continue taking the drugs prescribed. I went to a holistic dr office and they gave me the vit supplements to take and the doses. Maybe the supplements are also helping stop the negative affects of the drugs, I can only hope they aren't doing any harm. The only side affects I have are from forgetting to take the folic acid and getting nose ulcers (inside nose). I told the dr and she said take the folic acid everyday and it doesn't matter if I take it on the same day as the mtx. She is quite respected in her field and gives talks on RA and OA treatments with the UCD med center. I seem to have a mal-absorption for Vit D even though I play tennis during the day and get plenty of Sun, I take D supps and still my levels were only at 44 last I tested. I would like to get them up over 50, but the Dr doesn't seem to care about the D levels. Drs here in the states don't know much about vits and supps so they don't advise but don't care if I take them or not. I just know how I feel
Hello! Very good question! I take a turmeric supplement also. My doctor specifically told me to make sure it has a descent amount of curicumon and I ordered Tumeric tea off Amazon. I take Braggs raw unfiltered apple cider vinegar too. I drink 3 TBSP per day. 1/2 in the am and 1/2 in the pm. I pretty much take what you do except the cinnamon capsules and grape seed extract. I've seen those two things on Dr. Oz. I know they both have good health benefits. My doctor did add zinc. She also had me taking doxycycline when I first started getting treated incase I had an infection. I'm no longer on that period. I've been diagnosed for just about two months.
My regiment is working well. I was able to get back in the gym last week. I never thought that was going to be possible. Most times I feel normal and any signs of the disease isnt present and sometimes it shows it's face to let me know it's still there!
I noticed you're taking a lot of meds! I'm only on 10 milligrams of MTX and I take Meloxicam on a needs only basis. I generally take it once a week now.
Thanks again for that awesome post. I will have to google the health benefits of the grape seed and cinnamon. I will more than likely add them! 
I forgot I'm in the USA. Missouri to be exact or should I say Misery!
I take Omega 3,6,9.i take glucosamine 1000, and I also take VIT D-3 and K-2.
I have PsA and renal cancer. I've noticed my skin is a lot better since starting these. Obviously the long term effects aren't possible to measure, but I'm confident that they will do some good.
I'm on 4mg of Prednisolone. And take a weekly injection of Enbrel.
Hi all,
one thing you have to keep in mind? is that RD & and how the meds work is not the same for everyone, and i would think the same goes for supplements, I started to take Vit-C & D and about 4 week in i started to get more pain and flare-ups, not sure if it was the Vit-C & D but i stopped taking them and pain level has gone down and i flare a lot less now.
I will start taking them for a 2nd time just to see if it was them doing it.........as i can not be sure it was that or not.
marcus6
I would say that if you want to take supplements it's a good idea to first ask your GP to take blood tests for your mineral and vitamin levels. If they refuse then you can purchase home testing kits or get these done in a private clinic. I do know people who just take everything they can get - bottles of multi-vits everywhere and I often wonder if they are doing themselves more harm than good.
My GP is cynical about supplements too and maintains a balanced diet with oily fish is the best thing. But I have to say he was wrong about the Vitamin D and when I confronted him with the private lab results he acknowledged it was very low and then told me I was also low in calcium too. I was on Prednisolone at the time and I do have a small frame and had spent 18 months hiding from the sun because of MTX and my very fair skin and Rosacea.
So now I take an AdCal D3 on prescription daily and also 4000iu of D3 capsules which I buy online. I got myself retested recently and my D level had moved up to the low end of normal range and my calcium was perfect. The private clinic advised me to add in the extra D3 as they said with autoimmune diseases I should aim to be closer to the middle of normal range. As well as this I take one B12 daily (Methyl sublingual) because I have small fiber neuropathy and my serum B12 was at the low end of normal range. I believe it is hard to OD on this vitamin but the consequences of low B12 are very serious (undiagnosed Pernicious Anemia can lead to Altheimer's for eg.). So I did my research and take this accordingly
I'm off all my RD drugs presently because I can't tolerate them and I'm therefore reading up a lot about foods and supplements as well as specific exercise to see if I can manage this disease without drugs. I did find that AdCal D3 initially lifted my mood significantly, but the rest don't seem to be making a noticeable difference just now. I go in the sun when I walk the dogs and make sure my sleeves are rolled up and I do eat oily fish once a week too. I also make sure that I'm checked for things like Diabetes (in my family) Calcium, Ferritin and Folate regularly by my GPs. I don't believe in supplementing for the sake of it - better to do some research first if possible - especially if you are on RD medications.
I was told at the RNHRD that entirely up to me if taking them makes me feel better then do so. In other words, I suppose, tis all in the mind and if it makes you feel positive, then all is good. But did say that if RA could be helped by diet then consultant would be telling us to do so instead of using expensive drugs...
But surely would always make sense to take vitamins via the food we eat? Doesn't it metabolise differently eaten as a food as a combination of stuff? makes sense.
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