Inflammatory Arthritis /any AI chat thread.

[TheSpottedZebra]

Hi!

Would anyone be interested in an ongoing Inflammatory Arthritis / General autoimmune chat thread?

A couple of months ago I found this board after a new RA diagnosis, as I was fretting about taking my 1st methotrexate dose. I received so much help and support from so many lovely people that I wanted a new thread where others would feel free to post too.

So here it is.

Thank you for this thread @TheSpottedZebra

I have a range of AI issues, Sjorgrens Syndrome,Thyroid, Osteoporosis, Costochondritis, Arthritis, POTS, Vasospasm, high cholesterol, neuropathy etc. and have now been under Rheumatology for 6 years.

However, so far, despite repeated attempts to prescribe them, I have declined all drugs. I know from other experiences that my body will likely overreact to any drugs I receive and I will struggle to get help with those reactions. I have twice ended up in Resus because of drug induced Vasospasm and just don’t want a repeat of that experience.

It frustrates me enormously that there is so little information or research on what is driving AI issues in my / our bodies and whether there are more natural ways of treating it.

in desperation, after a really bad flare of my Sjorgrens this Summer I put myself on an anti-inflamatory diet. And I am stunned. I dont eat meat anyway, but have cut out Sugar, Gluten, Dairy, UPF’s, and Nightshades. Am now at week 12 of this new way of eating.

The upshot is that I have naturally with no effort, lost 20lbs, and all of my AI symptoms have declined markedly.

I would love to know if anyone else is exploring the diet / gut link to AI and what your experiences are.

I have axial inflammatory arthritis and nothing shows on my bloods. I am currently on sulfasalazine, can no longer take methotrexate or leflunomide. Rheumatologist says I am stable so won't refer for biologics. He says all my joint issues are from damage done before diagnosis and effective treatment. Yet new issues continue to pop up - it is like playing whack-a-mole! Happy to reduce meds if I am stable, but how do you know if you are in a new flare, as opposed to problems due to ongoing damage? My latest spinal MRI shows damage but no major inflammation which is good (relatively speaking!), but is that likely to be the case everywhere?

@jointproblems I understand what you mean. I have several damaged joints from uncontrolled rheumatoid flares. Once the inflammation is gone and the RA is not flaring they still hurt and there's nothing to be done. I imagine if you are in a new flare it would show in your bloods. Although I have palindromic flares which are excruciating but short lived and unlikely to show on a random blood test.

@Purplemoor I think being overweight is likely to exacerbate any auto immune condition so losing weight would naturally improve symptoms. Just losing all that weight is probably responsible for you feeling better, irrespective of how you did it.

I may be wrong but of your conditions I think most are not auto immune apart from sjorgans? I have osteoarthritis m osteoporosis, costochondritis - none of these are auto immune and consequently the drugs I take for autoimmune don't do anything for them.
I'm not a great believer in "natural remedies". I did once in desperation trying going gluten free for six months. It was miserable and made zero difference. I have never been overweight and eat a healthy diet. Some people say nightshades affect osteoarthritis but I remain sceptical. Cutting out upfs must be good for you in that you are switching to healthier food in general, but cutting out meat and dairy isn't going to be good for osteoporosis.

Thats interesting @Boope

I would have agreed with you re the Osteoporosis 3-4 years ago but my Rheumatologist asked for my Osteo care to be transferred from Endocrinology to him at that stage and has now taken control of that treatment along with my Neuropathy.

I have also read a number of articles linking Osteoporosis to Thyroid issues and very specifically to over medication.

With regard to the weight loss, I was never overweight, 10.5 st and normal BMI but did carry a lot of fat round my middle. That is what has fallen off me just cutting out those food groups. I have never eaten much gluten or dairy anyway because they irritate my gut, so I am attributing the weight loss to cutting out UPF’s like sauces, mayo’s etc and ditching the sugar.

I have always cooked from scratch so the UPF’s weren’t difficult but sugar has been a real battle. 12 weeks ago I was a real chocolate addict and now I just can’t have it in the house.

I haven’t eaten meat for years and substitute things like dried apricots, leafy veg, fatty fish, etc as non dairy sources of calcium.

Of course I am hoping these dietary changes may slow down the development of further AI issues and would love to hear the experiences of anyone who has actually succeeded in that approach.

@Purplemoor a friend discovered her AI condition via a private dietician. She cut out everything, even though ate very healthily- but just plain vegetables and unprocessed meats, despite having been veggie forever- and then reintroduced things slowly. She’s still gluten free but recently told me that a few doses of systemic proteolytic enzymes also cured a number of lingering issues. She is very interested in diet’s role in AI issues.

I was tested for coeliac in this recent screening- I’m not coeliac. I never get classic digestive issues or allergic type reactions either, although I know that’s not the whole story, very often, and doesn’t rule out something going on.

@Purplemoor my rheumatologist manages my osteoporosis but it's not an auto immune condition. He has a special interest in osteoporosis. He also manages my osteoarthritis which again is not auto immune.
Agree about medication, I suspect steroids are partly responsible in my case. However they have been unavoidable, I have asthma, had steroids during breast cancer treatment and more at times when my rheumatoid has flared. Together with a huge family history of osteoporosis.
I would never refuse treatment though. I've been on DMARDs for ten years but it wasn't working any more. I have been in so much pain and since starting new treatment I feel like I'm getting my life back, despite the inevitable side effects.

glad the diet has helped. There is a lot more research about this now and it is considered less whacky and less likely to be dismissed by medics. My partner went down this route but in his case, he was diagnosed with diabetes before the RA so it was an attempt to reverse that and it worked in that regard.
Unfortunately the RA was already running amok by that point although it took another year to get a diagnosis and another year to get the first lot of meds. He did see a private consultant who diagnosed him but referred him in to the NHS as she said their care is far more joined up than anything in private sector. He had to have all the medications as it was progressing really aggressively and quickly and of course it’s systemic so not just about the joints. He’s stable now and long may that be so but he still has the anti inflammatory diet and keeps his weight low (he had to lose 4 stone initially then there was all the muscle wastage from the disease) and walks about six miles a day as he feels he will seize up if he doesn’t. Works for him I guess. The AI landscape is fascinating it’s only in relatively recent years that some proper research is being done.

For all the Sjogrens Disease sufferers there are possibly three new drugs coming out to specifically treat Sjogrens. Ianalumab and Dazodalipep and nipocalimab. Ianalumab is in a positive phase 3 progress. Fingers crossed. As the second? most common autoimmune condition it's about time something was developed,🤞

Good luck with the new therapies!

I have felt a bit easier the last few days. Can’t identify anything different in what I’ve eaten or drunk, but I did a lovely meditation over the weekend. Do these things come and go to a certain extent? Up to now it’s been getting steadily worse. I’m delighted, of course, but I’ve a spinal x-ray next week and am wondering if they’ll think I’ve been making it all up. And whether I’m fooling myself and it’s going to launch back in at me again soon.

. Do these things come and go to a certain extent?

Definitely. At one time before my condition worsened I could go months feeling pretty normal and then bang a trigger sets it off. Trigger usually being a stress on the body such as infection, accident or injury or mental stress.

I might have overdone it yesterday, I’m in quite bad pain overnight and this morning 😔

I’m going to struggle with moderating my movement/exercise if this is life now, I’ve always been so strong and moved hard and strong. Weight has crept back up half a kilo, too, so I need to eat less again. Feels like I need to eat almost nothing these days to lose weight. Grumble moan.

@AlertCat pain overnight and in the morning which eases during the day is classic rheumatoid arthritis, don't know if the same applies to other autoimmune conditions.
If it is autoimmune it's good news and bad news. The bad news is that it's more serious than msk and not curable but the good news is there's a plethora of drugs that work.

My good news is that since starting on methotrexate my symptoms have almost disappeared. There are side effects of course, but I'm not getting that all over awful pain every day and the fatigue has gone.
Sometimes you don't realise how bad you felt until it stops.

Thanks @Boope . Yes saying I got morning pain that eased made the dr refer me to x ray. I’m glad to hear there are effective treatments! But a bit worried that nothing will be seen on images. Trying not to go all round the ‘what-if’ scenarios yet!

Hi all, how is everyone doing?

I have just had my booking appointment for starting adalimumab in conjunction with the methotrexate. Hoping this can move things into a better place going forward!

Though since it has to be ordered and delivered to my home, we're looking at after Xmas for starting.

I hope that settles soon for you @Orchid887 and helps.

My x ray showed only ‘normal age-related’ disc degeneration. The doctor also mentioned ‘some changes in the peripheral joints’ (meaning sacroiliac?? Hips??) but basically until I’ve seen the physios they won’t or can’t offer me anything else. I self referred (as instructed) to the physios back in August but haven’t heard back from them, and although I told her how much worse things have got, she basically said that’s it until I try PT and exercise. I do understand it, but it’s frustrating as I actually teach yoga and have studied anatomy and some therapeutic exercises for low back pain, as well of course as the anti inflammatory properties of yoga and meditation. So I have been doing these things all the way through and they haven’t stopped or improved things (though maybe they’ve slowed the progress). Also I am strong with a strong core from many years of Ashtanga and vinyasa yoga and I just don’t know what the physios will suggest that I haven’t tried.

I probably sound infuriatingly know-it-all so I will go to a physio even if I have to go private, but I do find it frustrating. This morning had to roll on my side and pull myself across the bed with my legs, after waking every 2-3 hours through the night with aches and pains in my hips and spine.

sorry. It’s been a difficult few days for a variety of reasons but this is not helping. I almost feel like I have been told to pull up my big girl pants and just cope, which I have been, but it’s getting worse 😭

Oh @AlertCat, I'm sorry things remain so tough. We seem to have opposite issues in that I'm trying quite hard to get a bloody physio referral! I got an OT referral and they were outstanding with aids etc to help me day to day but no physio to speak of.

I had x-rays which, bar showing some wear and tear damage in my fingers (which is put down to be a result of inflammation since I'm only 31!) Were normal. It was an ultrasound that ended up giving me a diagnosis.

It sounds like you've got an incredible core strength though which I've no doubt will help you navigate this. I, unfortunately, lack that! While I'm a clinical member of staff who is used to 12+ hours running around A&E, I find nowadays it takes everything in me to essentially tip myself out of bed/off the sofa.

My rheumatologist said today that my grip strength is below 1 which is, apparently, not good. I asked her what she normally gets since it feels like I'm gripping concrete when I do it. She got 16.

Guess it makes sense why I drop so much stuff now. Don't have the grip for it!

Sorry @Orchid887 . That sounds really very difficult. I apologise for ranting, especially when I have so much to be grateful for.

is it feasible for you to go private to the physios? I know a couple of good ones, as it happens, I doubt we are in the same location but at least one works online if you would like me to message you?

Oh gosh no, please don't apologise @AlertCat!! I'm very fortunate in the fact I had an easy diagnosis and everything thrown at it. This whole thing is awful so rant away!

Thank you, I really appreciate it. I've requested one through work as we get it within our NHS trust. Slightly difficulties as I technically live in another county but we've used our work address so I should get one at some point.

I'm finding today tricky. Little backstory for my moan here. In 2023, I had IVF in hopes of conceiving a sibling. I was successful in getting pregnant but unfortunately lost my little one around 14 weeks.

In Sept 24, I was trying again and just about ready to start drugs when my mother mentioned my morning stiffness and joint issues could be something to explore. I visited my GP who sent me to rheumatology and I got a diagnosis and started on Sulphazalisine (pregnancy safe). Figured I'd delay a couple months until things were sorted. I had a reaction to that and here we are, in the end of 2025 and I'm really struggling with mobility etc and still very much not able to go back to the IVF.

I guess I feel a little overwhelmed by the time this is taking. Obviously I couldn't try and conceive when I can't mobilise etc. But I just wish this could all be fixed up, on a drug safe for pregnancy, so I can get back to growing my family.

I keep thinking I've made peace with it all but today is showing I have not. Considering stopping the methotrexate when I start biologics instead of carrying on. That way there may be hope that I can have a transfer this year.

I'm a bit of a mess tonight!

Ah, that is awful. I do hope you get some relief and some joy very soon 💐

Thank you, me too! I hope you get sorted and someone manages to improve things for you.

@Orchid887 so sorry you are going through this so young. FWIW I never thought sulphasalazine was very effective anyway.
I wonder how pregnancy affects autoimmune conditions? Do they get worse or better with the hormones?

I'm a bit fed up. Methotrexate is working brilliantly for me but I'm really struggling with the side effects. I've sorted the nausea ( it was the folic acid caused nausea) but I have daily headaches and awful gas and bloating. The rheumatology nurse has told me to take a two week break and I have an appointment with the consultant in January. It means I'll likely flare up over Christmas. I'm also not ready to give up on the mtx.

Boope I've just had a methotrexate 'holiday' too! I've been struggling for over a year with daily -ahem- loose bowels (I can actually never spell the d word!) and weight loss and extreme hair loss. Have had all gut tests apart from colonoscopy and all fine so he diahorrea probably either ibs or drug-related.

So I had a holiday from my drugs, starting with methotrexate, then folic acid, then also hydroxychloroquine and vitamins. And nothing changed. In my pre-'holiday' appt, the consultant said any, ANY issues just call the rheumatology nurse helpline and I could get a quick course or jag of steroids if needed. Anyway, the pain came back and i called the line, three times before I got a voicemail just saying to start up the drugs again. No other help.

Now here I am, in pain, still shitting, not loads of hair left and back on the methotrexate and hydroxychloroquine. Have lost all faith in that helpline and all i have is a probable colonoscopy to look forward to!

I do also know, I already knew, that methotrexate also works well for me. And I don't want leflunomide.

Thank you for listening to my Ted talk moan!

@Orchid887 sorry tomread your updates too. My grip,is also rubbish, and I drop things a lot.

I did get a referral at my 1st appt to hand therapy, (and ive also never been to physio or OT), has that been suggested to you?

I do 3x sets of exercises RELIGIOUSLY per day, and I do think they help things not get worse and have also improved things a bit. They also did things like paraffin wax hand dips, which were nice and felt soothing and a bit of a treat.

I'd really recommend giving that a go, can you be referred to them? The exercises were, as with all the info I get given re. my RA, lifted directly from the Versus Arthritis website, so could link them for you if you wish. I did link them to someone else here i think but maybe was a thread in general health as I can't see it here.

So sorry to hear people are struggling ☹️

I think if you can afford it pay privately for physio @AlertCat . I had to see 2 rheumatologists privately before I got my diagnosis. NHS wouldn’t even refer me to rheumatology. Do whatever you can to get whatever you need .

@Boope a fair few people with RA go into remission during pregnancy .

@TheSpottedZebra what an absolute load of rubbish your helpline is.

@Orchid887 I think they like to keep you on methotrexate when you start a biologic as it can help prevent the body developing antibodies against the biologic. But some people are on a biologic only I think . Do rheumatology know you would like to do an embryo transfer? If not I think maybe a conversation about it would be an idea.

My adalimumab or however you spell it is coming today. My bloods have normalised going down from 20mg to 15mg. Did feel the difference though and have pulled a muscle using a digging hoe which is my own silly fault and amazing I actually can given I was on 2 walking sticks summer last year.

@Seaitoverthere that sounds very positive! But sorry about them muscle. Hot and cold can help.