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.

Can I join in? I've been diagnosed with psoriatic arthritis and fibromyalgia. Although I'm not happy about the fibromyalgia diagnosis because it just means no one will take my pain seriously anymore.

Some things that have worked for me would include intermittent fasting. I skip breakfast and lunch and have all my calories in the evening. It's a bit of a hard solution but it keeps me slim and I have significantly less sausage fingers in the mornings.

I was also told by my rheumatologist to take chondroitin and glucosamine. I also take collagen and turmeric.

I smoke weed sometimes because it just massively helps with the pain.

I also go on the sunbed occasionally throughout the winter. It keeps me from getting any psoriasis patches and I get less of the cold in my bones in general. It also improves my mood.

I'm aware of the risks of the last two solutions but my attitude is bollocks to it. I might get hit by a bus tomorrow and stayed in pain for nothing. I need to live for today.

I take codeine, paracetamol, and gabapentin every day. That massively helps.

The final thing is rest. It's no use beating yourself up for not being able to do things. You can only do what you can and them's the breaks.

I have been prescribed sulfasalazine by the rheumatologist but I'm too scared to take it. Methotrexate made me incredibly unwell. I refused lefludomide entirely after googling it.

Hi can I join please ? I’m was diagnosed with Psoriatic arthritis a couple of years ago though have had it for years looking back with long periods of remission but menopause has kicked it off. There were mutterings about Fibromyalgia too but for now they are concentrating on my PsA.

I had a hip replacement this summer due to dysplasia which has restored mobility in my hip but it is a daily lottery as to what else hurts.

Am on Sulphasalazine and have just increased my dose rather than having steroids as he suggested as can’t face more weight gain. I think the increased dose is making me unwell but I might have a virus, time will tell. I tolerated 4 tablets a day well but it didn’t control my symptoms that much. My liver wasn’t in the best shape at a scan so methotrexate not on the cards currently. Have tried loads of supplements with no success.

I'm glad to hear people on here challenging their ' fibro' diagnosis. It really isn't a diagnosis. I'm not sure why they add this when you already have a diagnosed autoimmune condition.

It worries me when people are told fibromyalgia before any other condition diagnosed. Then they get sent away with no further investigation.

But that's a whole other thread 🤷‍♀️😄

I found being diagnosed with fibromyalgia very perplexing. The doctor told me about some symptoms, which I said I didn't have, then he poked me in the arm and told me I had it.

I was especially baffled since I was seeing him for a diagnosed autoimmune disease that already explains all my symptoms.

It's an interesting one with fibromaylgia. I had RA for twenty years before I got the fibro diagnosis on top. For me the symptoms weren't the same. I literally couldn't get out of bed or use the bathroom on my own. I got lucky one day at an appointment and saw a newly qualified rheumatology Dr. He explained I had nerve damage and yep I do. My fingers and arms tingle all the time. I've also lost muscle strength whist I was bed ridden.
I joined a FB group but I found the negativity unhelpful. It seems few people wanted to get better and it was too benefits based. I was looking for dietary advice, exercises etc.

Thanks for this thread OP. I have Enteropathic Arthritis, have yet to meet someone else with the same dx. I am in good shape now, on Rinvoq which also treats my Ulcerative colitis. This time last year I couldn’t walk, or hold anything.
Despite being diagnosed in July 23, it took 3 whole months to receive my Rinvoq.( I had been on Infliximab before)
Initially I had a very bad acne flare, and had to compensate by going on a small dose of Roaccutane (10mg per day).
The rinvoq has made me very tired, even now. But as I can walk, it’s a small sacrifice.
If I could give myself advice, when the disease began to flare (2021) I would have only be prepared for some loved ones not quite understanding the pain you’re experiencing. I still find this hard.

I’ve done the completely eliminating inflammatory foods from my diet, but as I had to be medicated at the same time I don’t know if it made any difference. My blood work has stayed the same throughout (12 months).

I’ve booked an apt with a leading consultant in this field regarding any other medications. A second opinion/Christmas gift to myself 🫣. My NHS experience has been ok but at this point in my life (42 F active) I’m not excited about staying on this medicine forever. That seems to be the NHS plan for me.

I never realised when I was younger, just how many of us become effected by AI conditions at 40+

Did anyone see the clip of Gabor Mate talking about how autoimmune diseases in his experience affected more women of a certain personality type that put others needs before their own and stifled their own feelings of anger . It stopped me in my tracks as it is true for me especially caring for my Mum with dementia where I had to control my feelings .

@kerstina thank you so much - I hadn’t seen this but just searched after seeing your post. You’ve provided me with a lightbulb moment!!

grateful again to OP @TheSpottedZebra for opening this thread ❤️

Here is a part of the discussion. My mind is blown. https://www.instagram.com/reel/DCnA8hTudUX/?igsh=MXdudGd6dGVjc3d6Mg==
apologies to those who are not on insta, I couldn’t find the shortened clip on YouTube.

Yay, lots of new thread friends ! Welcome one and all. Thanks for everyone sharing their experiences, whichever end of the spectrum you sit at. This suite of diseases certainly affect us in a range of ways!

I'm going to be very opinionated, and say that I personally find Gabor Mate to be a bit of an attention-seeking, almost quack!

I'd counter his comments mentioned above by saying that society dictates that women (and girls) put other people's needs above their own, and were trained from a young age to not show anger.

Also he chalks everything up to trauma, and then pathologies normal low points of life as trauma. So in his book we've all experienced trauma.

Morning all.
Just posting to say I've had a very bad reaction to Wegovy.
I have suspected inflammation of the gallbladder. I'm waiting for scans now. Bedridden for three days. It's not fibro pain. Totally different. I had a hard job getting these drugs approved due to methotrexate however I didn't know I had gallstones. The only thing that helped was lucozade.

Oh no ! Hope you are feeling better a s a p Mrs red lipstick . Are you in hospital ?
Regarding Gabor Mate I think Dr Chatterjee respects his opinions as I know he has spoken about when he was duty bound to look after his father. I guess I am just really wanting to understand what causes these diseases and it makes sense to me.

I hope you're not feeling too terrible there. Any luck with your scans?

Oh no, Mrsred - hope you're feeling much better soon! Gallbladder issues are not rare with WLD, unfortunately.
By the by -does anyone else find it really gard to describe pain/s? It's like I just don't have the vocabulary! I know this pain is different to that pain, but I find it hard to explain why.

kerstina my opinions are just my own, and not very well-informed at that! I hope everyone feels free to express their own opinions also.

I too am trying to figure out why me, (and: did I cause this?). In my case, I've been really lucky, as in, no depression or trauma (until a few months ago, when I was already in the thick of RA). I've never smoked, scarcely drunk alcohol and eaten a really healthy, veg-packed diet my whole life. And I've always been active and not overweight thus far. Of course, I've also not gone on steroids so I know the weight thing could change any day if indeed I do I know writing that makes me sound like a smug judgey teacher's pet, but that's honestly not how I mean it. It's just that when i look at the risk factors, I only tick female and 40ish!

Ooh, on a sort of related note, I signed up for that Our Future Health study and I have my appointment this week in the car park of B&Q. Very exciting!
I figured I now have a vested interest in being part of a large scale health study!

May I join please? (Sjogrens disease sufferer) + other things

Happy Sunday everyone. Does anyone have any experience of how their AI responded to pregnancy?

I’m 11 weeks pregnant and feeling ok arthritis-wise atm but I’m nervous on how I’ll feel in the later stages. The drs actually think my pregnancy triggered my first flare as I’d had no symptoms pre-pregnancy and have warned me I’ll likely have a flare after this baby is born too - something to look forward to! 🤦‍♀️

I can't help you with that,@TheFamousMrEd as I'm only recently diagnosed. But I do wonder how long I've had RA for! Congratulations! Do you get extra monitoring during your pregnancy, from midwives and/or from Rheumatologist?

Yes this will be a consultant led pregnancy so I’ll have more scans and monitoring which can only be a good thing!

They may also take me off the biologics in my 3rd trimester but they said they aren’t keen to do that as my symptoms haven’t been settled for long. I think it would be awful to be in a flare with no drugs at the end of pregnancy with a 3yo to run around after!

Welcome @CherryRipe1 Are you Australian?
Actually, selfishly, I'm glad a Sjogrener has come along. I wonder if I am going to be told I have that. I obsessively look at my blood test and scan results in the 1million health/hospital/GP surgery apps I need have, and some recent tests have indicated Sjogrens. Well, I googled what they meant and they indicated Sjogrens, and the symptoms really REALLY fit!

It would be a pure nightmare, MrEd so I sincerely hope that's not your experience and that you have an excellent pregnancy and no flares.

Hello my people! I’ve had RA for almost 7 years, along with hEDS, POTS and chronic migraines. I was told I have fibro but I dispute this as I think the above more than covers the presence of chronic widespread pain.

I’m on my second biologic and I’m able to work full time, although I’m late 30s and suspect I don’t have that many years left in me of a high pressure role. I’m trying to get myself financially stable whilst I can.

I took ozempic and lost 4 stone which really helped my joints a lot.

I'm a Rheumatology nurse, bless you OP well done for starting the Methotrexate and I'm glad it appears to be working! It is the gold standard for RA and can work wonders. You are not alone in having concerns about starting it, but you will be monitored closely until you are stable on it. If it doesn't suit you there are alternatives. The aim is remission although you may have occasional flares along the way. I think a lot of patients are nervous about starting it as it is also a chemo drug...but you will only ever receive a tiny fraction of the dose needed for chemo.

Hey everyone!
Bit of a weird time for me.
I had my rheumatology appt with the consultant in a very fast inflammatory arthritis clinic. She was fabulous and said she'd be looking for either hypertrophy in the synovial capsule(?) Or active inflammation to confirm a diagnosis of psoratic arthritis.

I had the scan and then had my follow up appt come through for Monday.

It was the lovely nurse who called and went through results with me. They've seen hypertrophy and some degenerative disease in my fingers which was the only place scanned. My bloods also have inflammatory Markers.

She now needs to go back to the doctor and discus what the plan might be in terms of treatment. She discussed steroids as during the scan etc I was fairly okay and taking naproxen twice a day. But since then things have gotten worse.

She said she'd call back after discussion with the consultant so hopefully that'll be this week.

I'm only 30 and currently hoping to try for a second child via IVF so a bit dubious as to what they can do, what with methotrexate and Naproxen both being a no go!

Hope everyone is well.

I have PA as well. Welcome to this rubbish club!

I had a steroid injection in my thigh not long after I was diagnosed. It did really help. It affected my mood a bit when I first had it, but I had loads of energy that summer and much less pain.

I do recommend it if you feel it's right for you. It was enough to perk me up but not so much that I had really awful side effects. I didn't put weight on. I stayed about the same because I was more active.

The doctor won't let me have another one, but I'd jump at it if he offered.