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.

For everyone with knee OA, my partner has it severely in one knee and is awaiting a replacement. He recently discovered herbal knee patches, Wellnee brand herbal knee patches on Amazon but there are lots of cheaper ones that look the same. Wormwood, ginger oil & some other ingredient are in Wellnee. He said they work amazingly well & really reduced the pain levels.

Does anyone get swollen lymph nodes with RA flare? The one in my neck is swollen but I don't have an obvious infection, have been in flare on and off for weeks now.

Yes my glands in the neck often feel swollen. I usually put it down to inflammation levels but I keep forgetting to mention that to the consultant when I go and it is something she hasn’t checked.

Does anyone have this? If so what does it feel like and how did you treat it? Any exercises that helped?
I’ve had a number of tendon issues and the latest is insertional achilles tendinitis - it took me 3 years to semi recover from the last Achilles issue and it’s seriously affecting my quality of life as I love hiking and can’t do that at the moment. Standing, going up and downstairs feel like a hot poker in my heel.
I’m seeing a rheumatologist for a second opinion on psoriatic arthritis- the last one I saw totally ignored my tendon issues.
I’m managing to swim and do a gentle gym workout, icing, taking paracetamol and resting it as much as possible. A physio has worked on it and given me some exercises. I threw a hell of a lot of money at the last Achilles tendinitis including shockwave therapy and acupuncture and nothing helped 😟

Yes I do have a history of tendon issues but hadn't made a connection until recently and have never mentioned them to the rheumatologist.
In my 30s I had tenosynovitis which took years to resolve and pops back if I do anything repetitive (I'm 67 now).
I get regular rotator cuff pain and more so when in a rheumatoid flare.
When I get palindromic flares the tendons near the joint seem to go rigid. Had one in my hand and couldn't move it at all.
I was planning to mention at my next appointment

I was diagnosed with RA about 18 years ago. I also have osteoporosis and osteoarthritis. Couldn’t tolerate methotrexate or other similar meds as I also have neutropenia, it came to a point when I couldn’t even dress myself. I’ve had surgery on my feet because my tendons pull my joints out but I’ve had the bones shortened and been okay since.
I’ve now been on Biologics for about 5 years and been fine other than having gastrointestinal problems now and again.
I have other family members with autoimmune conditions.
I’m still managing to work which is good.

@CheshireCat1 you had the bones shortened? Yikes! That sounds painful. I hope you're doing well now?
We're you neutopenic before, or was that as a result of the medications?

Update. I started the methotrexate injections after having horrendous nausea and heartburn on tablets. The difference is like night and day. Mild nausea on day 2. I've been told to double up the folic acid on day2 and day 6 so will see if that helps.
Unfortunately I got a chest infection week one so had to skip a week. Then this week I got a dry cough and SOB which might have been asthma but I went to GP who sent me for bloods and xray in case of MTX lung side effects. It was all ok and now I have a course of steroids.
The good news is I can feel a benefit already.

Yay, @Boope ! Glad you're feeling better (apart from the bits when you were feeling poorly). Onwards and upwards!

Are you finding it OK to do the injections?

First couple were fine then I did one which bled and made a huge bruise. Don't think I did anything different, all in the thigh as I daren't attempt the stomach.

The pens are a brilliant invention, I really don't think I could pull up a syringe and sell inject.

Just a little note to say don't fear the tummy! I went straight to there after many months injecting there for IVF and it is totally grand. In fact, I wouldn't be brave enough for thigh!

The pens are great though. I've also had one or two that bleed and bruise and it's totally random.

Thanks @Orchid887 maybe I'll brave it. I just have more meat on my thighs than tummy!

Hello! I haven’t RTFT but spotted this and wanted to hop on. I’ve had increasing pain in my lower spine and SI joints since about March, one blood test showed a slight rise in one inflammatory marker, and the gp has referred me for an X ray after hearing that my pain and mobility are much worse in the mornings, easing through the day. A poster on a thread I started about my pain suggested ankylosing spondylitis and that’s what they are looking for. I don’t know whether to hope for a positive or a negative diagnosis!

Long story but for the last few years I’ve been getting a number of tendinitis issues which take a long time to heal. I’ve also had Achilles issues and started with the latest one at the end of August. I’ve been told it’s bursitis.
I pushed for a rheumatologist appointment despite being negative for bloods, and today they gave me a steroid injection in my bum and want to try me on a trial of Sulfasalazine
to see how I respond. The consultant was pretty abrupt and said under no uncertain terms that if it’s osteoarthritis (which it seems I have in my fingers), then there is nothing they can do.
I found the whole consultation very upsetting and it made me question why I am pushing for treatment.
My last Achilles issue lasted 3 years, stopped me running and now I’ve got it again I just feel very frustrated that I can’t even walk without pain. I’ve had lots of physio and treatments and nothing is working.
Anyone Had any similar experiences and had a trial of Sulfasalazine?

@Allfurcoatandnoknickers that consultant sounds appalling, though nothing surprises me. I've come across some very rude consultants and some lovely ones.
Sadly he's correct that if your problem is osteoarthritis they can't do much. The general advice for osteoarthritis is to give moving, use pain relief, diclofenanc gel is good. Ultimately joint replacement.

I have both rheumatoid arthritis and osteoarthritis and while I don't have symptoms like yours I have a long history of tendonitis and have had bursitis in my hip and elbow. I have osteoarthritis particularly in my fingers.

You may get a lot of benefit from the injection because steroids have a pain killing action as well as anti inflammatory.
I've taken sulphasalazine for about 5 years together with hydroxychloroquine which I first took about 15 years ago. The sulphasalazine usually has to be titrated up slowly. It makes your urine very yellow, nothing to do with dehydration. I found it also gave me headaches once I reached 3 tablets a day. The hydroxychloroquine did a brilliant job for many years but eventually wasn't enough, the sulphasalazine helped marginally but I am now on methotrexate as well.

Thanks @Boope you do start to question why you’re actually there and whether you’re just making a fuss. I can’t stand the thought of getting as bad as my mum was - she was in so much pain and never got to the bottom of her painful hands and feet 😪
I’ll see how the trial goes - I guess it’s just that- a trial- and see if I notice an improvement in my symptoms.

Hello @AlertCat sorry you finding yourself here too! I don't really know much about AS. I do know is that it's just changing its name -iirc it's becoming axial spondyloarthritis.

It's a funny one isn't it, chasing a diagnosis. On the one hand we all want answers as to why we're feeling rubbish and pain. But then we don't really want the answer to be arthritis! Do you know when your xrays will be?

Thanks! No- I rang today and the bookings guy said my gp had requested something they don’t do and it’s been denied, so she has to re-send the request and use the right terms 😬

What I want is for them to say, ok if you do THIS, it will be fine and you can go back to how you were. I don’t suppose they will say that.

Solidarity to everyone here ✊

@AlertCat I have recently been diagnosed with ankylosing spondylitis so just getting used to treatment. I was pleased to finally get diagnosed but reading up on it wasn’t the greatest experience. My body had to go all out with the autoimmune conditions.

Really sorry to hear this. Have you found anything to alleviate your symptoms?

@AlertCat Heat helps. I have heated car seats which have come into their own and a heated cushion. So far not much other than that. I am on a biologic but it doesn’t seem to be doing much, so seeing the rheumatologist at the end of January for next steps.

I hope you find something that works. Turmeric supplement has reduced the pain I feel at night.

My friend had to go through a few biologics for his AS until they found the right one. Quite a few people find relief with LDN, I'm going to try it for pain.

I think the key point is if it’s autoimmune and inflammatory there will usually be inflammatory markers showing in the blood CPR levels. That is probably why they hinted more towards osteoporosis which can be as painful!
it is horrible when you go in to these appointment all hopeful then come out feeling worse like I did with my GP appointment yesterday.

I think it is important to note that there some inflammatory arthritis are seronegative so nothing shows in the blood but you still get swollen joints and pain etc. Some people with Rheumatoid arthritis have this and it is very common with psoriatic arthritis.

So sorry to hear people are in pain and hope starting new drugs can make a difference. I’m starting a biologic soon for my psoriatic arthritis after Sulphasalasine did nothing and methotrexate helped but not touching my back pain and still getting issues with lots of joints.

Despite it all I am so much better than I was last summer before my hip replacement, I am so grateful it got done finally.