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.

And anyway, back to me!

I was diagnosed with RA literally 2 months ago today. I had to wait months and months for my urgent rheumatology referral, and in that time I got much worse and was in constant pain and saw a lot of joint changes.

I started methotrexate after a lot of googling and with much hand-holding! Tablets first then the gastric symptoms got too much and I've switched to jabs. 2nd jab due any minute, when I move the cat.

Honestly, I've improved so much. Joints a lot better, and I feel a lot less shit. I can do stairs again! I only take about an hour to get moving innthe morning! I still have a way to go, but things really have improved.

I have osteoarthritis in my knees that flares up for no reason. It keeps me awake at night and u can hardly walk during the day.
I can only take paracetamol due to other health condition, but it hardly touches the side.

That's tough. Is there literally nothing else you can take for the pain? Has the Dr told you this?
I've been taking a cox-2 inhibitor which isn't for everyone but it's great for me.

What about tens, have you tried that?

Hi. I posted on the other thread. I have psoriatic arthritis and first got symptoms on 2020 and was lucky enough to have an early arthritis clinic in my nearest hospital so was diagnosed September 2020. Currently on methotrexate injections and my 2nd biologic.

Hello, well done Spotted Zebra for taking your methotrexate! I've been on it about 8 years now, at various doses, alongside various biologics through the years. I had bad sickness when on 15mg years ago, so they tried injections which were worse for me so I decided to stick with 7.5mg of tablets. They're slowly increasing it and I'm on 10mg now which seems fine. I'm also on Toxicicilmub (i still cant pronounce or spell it after 2 years) infusions monthly. RA treatment can be a trial and error process. There's so much arthritis support out there, don't ever feel alone!

Hi, OP. I have psoriatic arthritis, osteoarthritis of the spine, and a whole medley of inflammatory conditions from skin to gut to organs.

I'm on biologic injections now (Adalimumab) mostly because of my very severe arthritis.

Day to day life isn't a bundle of laughs at the moment, and the byzantine and partitioned, non-holistic NHS system doesn't help.

Hi, I have arthiritis in both my knees and my feet.
X-rays suggest osteo, but my CRP is 13 and my symptoms don’t exactly match osteo so I’m under a rheumatologist.
Actually awaiting MRI scan results.

anyway, when I flare, i can’t walk - Heat, swelling, stiffness and pain.

I have to sleep with a pillow between my knees every night, as the pain wakes me up else, but other than that - I think, I do okay. I manage to walk 20-30k, a day, when not flaring.

I have just discovered turmeric capsules. I know not everyone can, or should, take them, but they have made my knees feel 10 years younger :) worth a try if not contraindicated.

I have axial spondyloarthritis and was in so much pain before I started my treatment. I’ve been on adalimumab for 4 months now and I feel like a new person!

I have arthritis in my spine, hips, hands, ankle and feet. (I’m doing well for 36 🤦‍♀️)

I can stand again without my feet burning, I can make a fist with my hands, and stand on my tiptoes. The brain fog is also so much less which is a relief.

It’s amazing what drugs can do, even if the side effects sound a bit scary!

The spotted zebra thank you so much for starting this thread. I have recently being diagnosed with Inflammatory Olioarthritis but am declining taking medication for now.
Thank you to sleapeazie for recommending turmeric . I am really interested in things that help and also if people have any idea what caused it in the first place. I think mine may be partly genetic ( my grandad had a stick and one leg shorter than the other) and partly severe stress. I thought mine was a knee injury at first as it came on so quick. One of the questions I asked at the diagnostic hospital appointment was if the covid jab could have triggered the inflammation response if I had covid. I expected her to deny it outright but she gestured who knows with her arms

Hello all you inflammatory people!

@TheFamousMrEd I too can now do a (kind of) fist after months of not being able to. So have a virtual fist-bump! I've been going to hand clinic, and religiously doing my hand exercises.

@kerstina I also asked my rheumatologist- at my one appointment thus far - what caused it. I guess it's pretty normal to try to understand why. I don't have any family history of AI things, and my only risk factor seems to be being a woman aged 40ish. She said they don't really know, that there is probably a genetic likelihood with something pulling the trigger. And the current research is mostly focused on gut health. So who knows!

@Hercules12 did you add in a biologic straight away?

If it is gut related might be my chocolate habit . Might try and cut down on it a bit see if it helps. It is my one sin and I eat a decent amount of it in the evening but I know it is highly processes food. Did anyone else lose weight with their inflammatory arthritis?

I've suffered joint pain for over 15 years, I had an appointment with rheumatology in the summer. He suspects mechanical arthritis rather than inflammatory arthritis. He sent me for an MRI of spine and pelvis but this hasn't been reported on yet.

I have what I believe to be a flare at the moment, I'm in my 7th week. I'm not sure how much longer I can keep going with everyday life as I am just so sore everywhere. The soles of my feet feel like I've run a marathon in my sleep.

I'm 53 feeling like 100 and I actually felt dismissed by the rheum which was disappointing as I was looking forward to getting help.

Hello, just jumping on to say ask me anything. I have had rheumatoid Arthritis for twenty one years. Last year I developed fibromaylgia. That was hell on earth. I also have a very underactive thyroid.
I'm on Rituximab, methotrexate, Naproxen and Levothyroxine.
I carry the shingles virus too.
None of it is easy.
I am in my third week of Wegovy. It has shown a reduction in inflammation for some. I'm overweight due to steroid use so I'm giving it a try.
Please check contraindications for turmeric if you take methotrexate.

Hi thespottedzebra- you have to fail 2 dmards and have a certain number of swollen joints to get funding for a biologic which was me. I was worse on the first one so couldn’t get funding past 12 weeks for it but just had my funding renewed for the one I am now as I’m doing relatively okay on the combination of this with methotrexate.

@Elephantino I hope you get some answers -and some help soon, and that your pain reduces. It's awful feeling dismissed.
I'm still soooo grateful to the locum gp who finally listened to me over the phone, and got me in next day for blood tests, then sent off an urgent referral which then took months and months I even checked to see if she was still there as I wanted to say thank you. But she'd gone.

@Mrsredlipstick that's really kind. Interesting re Wegovy - I was reading about its anti-inflammatory applications outside of weightless. Hope it does great things for you!

May I ask - given there are a few newly or nearly-diagnosed people on here - is there one or 2 pieces of advice that you'd give your newly-diagnosed self?

@Hercules12 yikes, that seems like a lot of things to fail in a short amount of time. Hope you carry on doing well with this combo.

I take it 'fail' in this sense means that either it gives you bad side effects or no relief?

Fail means it doesn’t do a good job with the arthritis - that’s what it meant for me. Also one of the dmards caused raised liver in blood tests as well not helping.

Hi everyone!
I hope it's okay to tag in for the moment.
I'm currently being seen by rheumatology for suspected Psoratic arthritis.
I was very lucky to be seen within two weeks of GP contact due to the early inflammatory arthritis clinic. My GP initially suspected seronegative rheumatoid but the consultant believes it's likely psoratic. On that day they did more bloods and an xray, then 9 days later an ultrasound. The follow up is booked for 3pm tomorrow via telephone.
I'm not sure what I'm more nervous of, a confirmation of suspicions or a call to say "all looks fine so no worries from us!".
My joints have been getting so painful and swollen and I'm really struggling to manage at times. Especially at work!
I suspect a phone call follow up means they may not have answers yet.

I have AxSpA, Oesteoarthritis and Fibromyalgia, and am on adulinumab but I don't think it works for me, struggling to get seen by my rheumatologist, and constantly ill with one infection, cold or big or another.

I work full time and manage the day to day juggle of work and kids but it's really hard some days and is bloody tough on those around me.

A home for us🥰.
I am 3 years into my RA journey. I've had a very tough first two years and now loads more stable on top-dose methotrexate injections and adalimumab biologic. Finally something works though I have to follow certain lifestyle changes which are hard for me.

@TheSpottedZebra top tips as requested:
I would say watch your alcohol intake. It was the only thing that took away the pain on bad days but I developed a dependancy. I'm OK now!
Also keep moving. The less you do, the less you will do.
Eat plenty of good fats. Fish, eggs, butter beans, avocado. I know when I need to up my fish. I don't really eat meat anymore but that's more a personal choice.
Smoking doesn't help either. RA and it's sisters can cause poor respiratory function. The new tablet is out there. Give it a try if you smoke.
I got out of my wheelchair within six months but I'm an arsy miss. I do walk with a stick and that won't change now I believe. I also use passenger assist on railway journeys, it's fantastic.

There's definitely a link with the gut for me. I lost weight, I had IBS before the RA symptoms started, lost about 20 lbs and wasn't overweight to start with.

Been trying to gain it back for a few years now but it's not easy as all the food I love makes me feel ill and causes joint pain. I'm fine if I stick to the boring healthy stuff but can't eat potatoes, tomatoes, dairy, chocolate (not even vegan chocolate) gluten, onions, anything with spices in, processed food.

So I'm forced to stick to healthy foods, chicken, rice veg, when what I really want is Pizza followed by a tub of ice cream.

Hey OP. Glad to join this thread. I feel I may be in a different category to most and am conscious I may scare people into thinking ' shit, hope that doesn't happen to me'.

I'm incredibly unwell and significantly disabled. Trying to understand exactly what is driving everything. I have alot wrong with me. EDS, IBD (stoma now,) ank spondylitis, Sjogrens, POTS, severe neuropathy believed associated with Sjogrens.

I'm on ADUMILUMAB which made me feel better generally. It stopped all my bowel blockages which often hospitalised me. I now believe it has stopped working.

I've been on methotrexate injections about 7 weeks. I don't feel better at all. I feel like I'm just so genetically messed up, nothing is going to work. They won't let me try any JAK inhibitors due to history of pulmonary embolism. I said I don't even care. Risk is worth it as I'm housebound and don't move much. I live on a liquid diet.