Pain , unable to take NSAIDs or biologics

EFM01

Hello, looking for some advice and guidance. I have had arthritis and ankylosing spondylitis for over 10 years now. I used to take NSAIDs but then they caused problems in my gut (IBS) so I was put onto biologics. I have tried two types of biologics but ended up catching so many infections I felt it wasn't worth it. Two months down the line the inflammation pain in back and much worse. Are there any alternatives medicine's I should try? I also want to look into diet too, I don't eat too much processed meat but I do eat quite a bit of gluten. Also any supplements that would help or natural remedies. I am going back to the gym and exercising now after a break but still active doing over 10K steps a day. Thanks

Arthuritis

@EFM01 This is purely from my own experience as an escapee of RA, on the run from all immune suppressants and symptoms, for 2 years. Amazed the consultants at the hospital and stumped them, to the rheumies it was like galileo coming in to tell the Pope the sun doesn’t go round the earth and they had it all backwards.

From my experience, it’s not so much the quality of the diet as specific surprising triggers in it that keep you in a state of inflammation. At its worst when I knew nothing and was newly diagnosed, reliant on the dogmatic religion of pharmacological products to address one symptom and start 10 new ones, my hands were so badly affected I couldn’t open swing doors, where you have to push, even to the hospital or consultants, and all the taps where I live had to be replaced from tap to lever. I needed electric tools like can openers etc. The list goes on.

However what I learnt was

1.what trigger foods you eat matters, and it’s not the quality but the specific trigger substances.

2.RA inflammation is controlled by the nervous system (it follows your circadian rhythm, which is why it’s worst at night and when you wake up), and the vagus nerve plays a huge part, if you have had reflux disease (also affected by vagus) then this will also be impacted.

3. Track your blood test TRENDS, not a point in time snapshot, but where it’s headed.

Now, onto the kicker. I thought I was eating healthy with veg, fish or chicken occasionally lean ham. Yet I was in terrible pain. Nothing touched it. It took 6 months of 20mg MTX to make life vaguely livable, less painful. Then one time I thought I’d treat myself to beans on toast. This triggered an almighty flare so bad that I had to bring forward my weekly MTX dose and ask for it to be maxed to 25mg. Never again beans! 6 months of this and I got shingles as well as frequent bacterial infections. It would seem that I was sensitive to beans or rather, lectins from beans, it’s a protective protein meant to protect the plant from being eaten by poisoning the animal that ate it. Normally not a problem, but if your gut is damaged and has become sensitised to it, your gut immune system will react violently to it, triggering alarms and a huge flare. Gluten is a lectin.Unfermented Soy protein also contains nasty lectins that the sensitive will react to (found that out painfully this january). Meat products fed on raw soy will also have it, which is almost everything in the supermarket, fish, poultry pork. Not Beef, cows ferment soy as they are ruminants. So although Norwegian salmon, posh supermarket chicken and ham gave me flares, McDonalds Big Mac never did!

So what I did was first go on a water fast for 10 days to give my gut a break, then smoothies of leafy green veg, mostly rocket salad for 30 days, and that got me out of the dire state. I made a list of all the things that would be even the slightest trigger and avoid them.

My short list was

gluten

Bean lectins

Some fruits not sure why - posh avocados were nasty, as were pears, cherries and papaya to some extent. Apples not too bad.

Avoid all meat except beef

Avoid milk products, sadly included chocolate as casein was a culprit common in cheese.

To have an occasional treat I need to have built up enough “credit” to not flare. (In cellular terms my eosinophil population needs to be below .19 to have that treat, ideally below .1).

I eventually was able to escape the immune suppression and symptoms, go to the gym 3x a week until jan 2025, when I accidentally had an unfermented soy protein drink and was blown back into RA. Now I am planning my escape but using my experience of what worked for me to ease my path, not listening to docs who know nothing about nutritional impact (in 7 years of medical school they spend 10 hours in total on nutrition).

Here are some links to get you started:

ZOE

https://podcasts.apple.com/gb/podcast/zoe-science-nutrition/id1611216298?i=1000696532853

leaky gut UCL research

https://www.ucl.ac.uk/news/2021/sep/targeting-gut-relieve-rheumatoid-arthritis

sfed

https://londoncfm.co.uk/what-is-the-aip-diet-autoimmune-protocol-diet/

Arthuritis

Hope it helps

frogmorton

Hi @EFM01 I hope you aren't struggling too much at the moment. I am also no longer able to take anti-inflammatories. The exercise you are doing is so good and really will be helping. Like you I make sure I exercise daily as much for my mental health as physical. It feels good to know you are doing yourself good.

I am interested (as he knows) in @Arthuritis story. I agree with a lot of his advice and feel as though I have genuinely improved my own arthritis and pain levels a lot through diet. There is definitely a school of though which links our gut microbiome to inflammation.

Personally I don't eat meat fish eggs or dairy and make sure I eat my 30 fruits veggies nuts/seeds a week. Usually achieved easily by Wednesday and I start my count on Mondays.

Arthuritis possibly achieved remission because he took action far quicker than I did. I was an unhealthy vegetarian for many years after my own diagnosis and suspect (well I'm sure) some damage was already done to my own joints.

One extra suggestion if you live near enough to a Nuffield gym? My sister (has OA) has just started this

https://www.nuffieldhealth.com/about-us/our-impact/healthy-life/joint-pain-programme?utm_source=Google&utm_medium=Paidsearch&utm_campaign=Feb23&utm_id=JointPain&gad_source=1&gclid=Cj0KCQjwna6_BhCbARIsALId2Z1Y10gYm8Bh_nOfgEaifEhJu5lNuuFKjPATccr3Sef6pghDHexlvGMaAiaSEALw_wcB&gclsrc=aw.ds

I hope that link works. I know others have used it here and found it can make quite a significant difference to their pain.

Take care

Toni x

jonr

Hello @EFM01,

Good news to read you're heading back down the gym and keeping active which is one of the main cornerstones for managing Arthritis in all its forms but as you say it does require effective pain management.

Natural alternatives to NSAIDs include Omega 3, such as Cod Liver Oil and following the Mediterranean Diet will pack more in as well as being healthy, so oily fish, eggs, olives and dark green leafy veg.

I've had some good success with Hyalluronic Acid supplements which make a noticeable improvement in reducing crunching and grinding in my knees.

For pain, full spectrum CBD supplements are a good alternative to Co-Codemol for example.

Have you looked at alternative therapies? I've been having Acupuncture for over a year now, it took 8 weekly sessions before kicking in but boy, did that make a difference to my pain levels, allowing me to do more sport, physio and exercise. Now I go monthly to top up.

Hope these help,

jon

Arthuritis

@frogmorton I wasn’t aware you were interested in my story😄

I wish rheumies were though, but it ranges from denial or ignoring of the imaging & scanning evidence from their own Radiology dept that contradicts their religion as prescribed for turning the prescription handle to just not interested. Wes Streeting should really look at how many people could be saved from chronic long term costly treatment by making them well and keeping them there. I had to find out by trial and error of my own experience and post flare research that many common edibles may contain triggers that immune systems often don’t like. Soy being one of them. It seems however, that as medicine has become standardised globally, including U.S. genuine second opinions are rare, as everyone sings from the same hymn sheet. I did however listen to some talks by two doctors, who were themselves diagnosed with autoimmune. One with Lupus and the other classic RA, in the U.S. where healthy food free of weird stuff is not as common as UK or the EU. Both had inspiring compelling stories worth listening to for free on youtube. I think I posted about them as a newbie trying to find a way out.

Dr Monica Aggarwal (Cardiologist, RA)

Dr Brooke Goldner (Psychiatrist, lupus)

Both docs like me escaped, wrote about their experience years later & hopefully didn’t encounter any triggers subsequently.