Supplements Alternative Treatments

[GlynisMcgee]

Hi all. Happy New Year from a sunny South Africa. I've been looking at introducing supplements to my daily routine. But looking at what is suggested, doesn't rock my boat.

The struggle is real, and I sometimes feel so run down and exhausted, well most of the time. I am on Salfasalazine since March 24, then they added Lyrica which was dreadful. So I stopped that.

Of late I feel like I've been hit by a train. My spine, knees and neck. Of all the places to be riddled. I've always been a strong and muscular person. Lots of yoga Tai chi and other strong, but passive movements. Now I struggle to get in my car, and generally feel so exhausted.

Also, mind you, my lung capacity is very low, I'm told that this often happens on RA medication.

Any recommendations on what to add naturally to my diet? I know turmeric is good, I'm trying sumac too.

I see my physician in the next month. You know the routine bloods, scans and MRI. So exhausting.

My twin grand babies bought me cane, I thought it was a joke but it helps so much. Bless their beautiful hearts.

In light and live6

Glynis

[Ali_H]

hi,

VitaminD3 is often recommended in UK but obviously you’re a little sunnier over there so may not be necessary (simple blood test will say if you’re low). I also take flaxseed oil (instead of fish oils as I’m allergic to these). Some simple water based exercise/movement may help ease things. Meditation helps me (vipassana style) and I find moving often and little helps me not get stiff… sitting for long times is my undoing! When I’m flaring I cut out potatoes and tomatoes as these seem to exaggerate things (I don’t eat many of either now nor of bell peppers).

med wise clearly a change is needed and hopefully your physician has some ideas of what next be sure to say how it is for you and ask any questions you have.

👏 to grand kiddies they obviously understand at some level and are happy to quietly support👏

All the best

Ali

[GlynisMcgee in reply to Ali_H]

Hi AliThank you. Yes I do meditate most mornings, and spend quite a lot of time in the pool. So hot here these past weeks. So yes, bobbing around in the pool does help. I also do Ujaai breathing to expand my lungs, and take old pooch for beach walks. I do work, at least 6 days a week, but there's not a lot of movement going on there.

I'm blessed with a wonderful GP, she gives me infusions when I'm totally flat.

Have a wonderful 2025, thank you for your response.

In light

G

[virtualreality]

Hi   GlynisMcgee , would love to see some of your sunshine over here in the UK! A happy new year to you too ☀️

Sadly I'm no expert on supplements to offer good advice on those, but did want to say that from the sound of your symptoms and fatigue, a medication review might be warranted with a view to perhaps adding to the sulfasalazine. They may well be a sign of active inflammation, in which case treatment escalation might have more effect for you. That said, hopefully others will be able to offer some info or advice about supplements as well. I just take very basic ones like vit D3, calcium, K2 and iron when needed.

[GlynisMcgee in reply to virtualreality]

Hi... here is a vucket load of sunshine for you... 🌞🌞🌞... albeit I took my old pooch for a rainy beach walk today. Thank you for your response. I will be seeing physicians in the next few weeks.

A wonderful 2025 to you.

G

[Lolabridge]

Hi from very cold England 🥶

I recommend you ask your Rheumatologist for a medication review as it sounds as though your RA is not well controlled on just sulfasalazine. Lyrica is pregabalin (I had to look that up!) and is usually prescribed for fibromyalgia and other types of nerve pain. Hopefully the blood tests should show up how much inflammation is present and scans and MRI will show what joint damage you may have. In the UK we are usually offered methotrexate and, if that is not suitable, a biologic medication.

You should also ask your consultant or pharmacist if any supplements are recommended or even contraindicated with the medications you take (or intend to take). Have a look at this link for some information about turmeric for example: medicinenet.com/which_medic....

I had not realised that it is not recommended to take turmeric supplements if on any NSAIDs for pain relief (ibuprofen, naproxen etc) or with blood thinning medication, ffor example.

I do know that Fish Oil is often recommended for RA and I take it, but it needs to be high strength and good quality (preferably from the body of the fish and not the liver).

If you look on the NRAS.org.uk website in their Shop section you can download copies of their publications "Medicine in Rheumatoid Arthritis" and "Fatigue Matters" which you may find useful. I hope you can find something to help with your constant fatigue, although many of us suffer with it too from time to time!

[Runrig01]

I agree with others re a medication review by your rheumatologist. It could well be a flare, exacerbating the fatigue.

Re supplements, I’d be very careful, get tested first to see what if any your low in. I take magnesium for my muscle spasms, but it s also helps fatigue, my gp suggested it would be good alongside my meds. Many supplements use the same enzyme to metabolise, as over 50% of our meds. It can result in enhancing or inhibiting the medication, which means the drug either never reaches a therapeutic level or you could end up with toxic levels of the med. I have personal experience after purchasing some pure turmeric, and being told by the sales rep, it was safe with clopidogrel. I ended up covered head to toe In bruises, from it increasing the effect of clopidogrel. Some vitamins and minerals can be harmful at high levels, which is why you need to be sure you need it, I was advised during covid to take more Vit D by my gp, despite being on AdCalD3. My levels ended up above the top of range, it was only when my endocrinologist asked if I had frequency and urgency passing urine, which I did, that she explained they were symptoms of Vit D being too high. I returned to just the AdCalD3 and the urinary symptoms disappeared. Although supplements can be bought over the counter, they can cause problems when on meds, and it does clearly advise speaking to your dr if your on medications. Hope you find something that helps 🤞🤗

[Olive12345]

I started taking choline for other reasons and found my lupus type flare ups stabilised quite a lot. It didn’t stop my spine and neck pain but I could definitely move around ok. Choline is an amino acid found in eggs and red meat. Iron supplements also helped me get rid of a few niggly symptoms (the ones that kept getting me diagnosed with fibromyalgia). That was things like tingling and breathlessness. I had low ferritin but normal haemoglobin.

My mum is a retired nurse and she was having a rant about hospital food recently and it made me think about nutrition and illness. Years ago people knew that if you were sick you needed extra nutrition, like bone broth etc but that seems to have been forgotten I think. It makes sense that people with a chronic illness would need extra nutrients than other people so I think the best place to start in managing flares is adding as many nutrients as possible! I keep adding legumes or nuts to meals I wouldn’t normally for a boost!

[CoastalLiving]

As well as what's been said on meds review .....

Autoimmune Protocol Diet is a good place to start in terms of nutrition. Elimination and reintroduction is the gold standard with it so you can find foods that agree with you and also heal any gut issues.

In my research and discussions (mostly via functional medicine doctors, nutritionists etc lots avail on podcasts and books as well as platforms like Sonia and Commune) leaky gut is a key component of autoimmune and the meds we take may make it difficult to heal it. Anyway when leaky gut is present it is hard for supplements to get properly digested so is worth speaking to a nutritionist/functional medicine doctor/dietician who specialises in autoimmune support so get some advice.

Sometimes creams/oils can work better eg Magnesium as it gets into our system more reliably. Or sprays that go direct under the tongue and absorb directly into the blood stream - like Iron spray (if iron is what you need). But all in all better to get some advice on what will directly support you otherwise you can spend loads of money on supplements that aren't doing anything for you