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 @DestroyEverythingYouTouch, I will absolutely keep that in mind and will jump at the chance if offered! While I'm glad I have the results of the scans and bloods, part of me wishes the appointment had come more in a "this is the problem BUT this is the plan" way. Feel a bit left with information I can't process at the moment!

I had a period off work because things got so bad. Went back a few weeks ago on a phased return. Tomorrow is my first day back full time, on a 12 hour shift and it's absolutely not an easy one. I'm in an acute clinical setting all day and in charge. This used to wipe me out before issues arose and honestly the thought is making me want to cry, when a quick trip around tesco today had me in agony.

Please can I join you? I don't have a diagnosis as I doubt getting a GP to be interested. For several months I have visibly swollen joints in my fingers on one hand but no heat/redness so I'm guessing osteoarthritis. Too painful to bend my fingers at all in the morning and wakes me up if I bend my fingers in the night. Generally low level aches and pains in my whole body. I'm early forties.

I can live with a sore hand, but the thought of it moving to a leg or foot is frightening me.

Treating it with ibuprofen and lots of voltarol gel. Intermittent fasting and low carb diet helps me feel better in my self but doesn't seem to make a difference to my knuckles. Interested to hear about turmeric.

I strongly recommend you ask your GP to refer you to rheumatology with those symptoms. I recommend getting some photos of your hands first thing and in the evening to show the difference. Sausage fingers in the morning isn't a good sign - I'm typing with mine right now.

I take turmeric. I can't say it makes any difference I've noticed but I keep taking it. I think I mentioned earlier that my rheumatologist suggested chondrotin and glucosamine. Have you tried those?

Thank you @DestroyEverythingYouTouch I haven't tried Glucosamine or condrotin, now might be the time to start.

The fingers are a constantly a bit puffy compared to the other hand but the main visible sign is that the finger joints themselves are swollen, particularly my middle and index fingers. It's a good idea to take a photo though, as possibly I'm wrong about that, I don't really look at them in the morning.

I’m so pleased that I found this thread, thank you for starting it @TheSpottedZebra

I have Psoriatic Arthritis that was diagnosed a year ago although I’ve had it for years, ulcerative colitis and osteoarthritis.

I’m currently having probably my worst flare to date. I have been on Sulfasalazine since Dec which seemed to work well at first,

When this current flare started in October I was put on oral steroids by urgent care and when I saw my rheumatologist I was given a steroid injection in my bum and started on Methotrexate,

The steroid jab has obviously not worked (he warned me that it was possible) and I’m now using crutches to move around, still with extreme pain and difficulty.

My bloods came back yesterday and my liver results are looking poor. I’m now waiting for the rheumatology team to contact me while feeling really sorry for myself.

The Instagram clip that was linked earlier is spot on for me, I often wonder what started all of this off.

Oh no, @Therewere5inthebed that sounds really tough. Sending you sympathy, and healing vibes!
Have you heard from the docs yet, or do you know whe you will hear?

Any idea what made you flare?

@TheSpottedZebra I had an email from them this morning actually, I now have an appt for Thursday 6th, the day after the long awaited FDR hearing for my divorce!

What a fun week that will be I’m sure..

<Googles FDR hearing...>

Blimey, that IS a tough week! But hopefully a very productive one that allows you to move on positively and without pain/s

I’ve had a flare up of osteoarthritis in my knees for the last few weeks with a gnawing stabbing pain, plus some sciatic pain as well which is burning and stinging. It is present all the time and I cannot get comfortable at night meaning I am exhausted from very little sleep. I have a GP appointment later today, and hope he can prescribe something for the arthritis and nerve pain, but not steroids( I am on the list for steroid injections, but do not want to take them orally) Anyone else have a mixture of sciatic and arthritic pain? It is making my life miserable.

Me too. I feel this absolute bastard is my biggest problem. Severe crippling neuropathy through my entire body in my case. And all the dryness. No meds working. Mine is pretty bad.

I have loads of AI conditions. Walking genetic freak tbh 🤷‍♀️😄

@DestroyEverythingYouTouch I've been on methotrexate injections 8 weeks. No more. I have been sicker than imaginable. Why do these things that suppress inflammation make you worse!! I just don't get it. I am going to ask for cellcept because I have no options left for the Sjogrens disease - which is brutal

@Tittat50 I think we've spoken previously about your horrible sfn & difficulties getting a diagnosis in the UK. I've asked my rheumatologist in the past when I was in a painful flare about biologics & took a list of them, I just got blank stares and suggestions to try medical trials! I'm currently on hydroxychloroquine but I've cut the dose down. My eyes & mouth been ok lately as markers all nearly normal now. Saw this and thought you might be interested in this latest drug and scroll down for the info on a traditional Chinese medicine.
https://sjogrenssyndromenews.com/news/nipocalimab-granted-fda-breakthrough-therapy-status-sjogrens/
Good luck with the Cellcept.
@TheSpottedZebra It you want to share your blood tests or message me, I'll have a look and see if I can see anything. I'm not medically trained apart from training as a nurse for a while years ago and quitting but have read extensively on Sjogrens.

That's kind, @CherryRipe1
I might just be getting a bit health obsessed though, and reading too much into things. I've had one (!) Rheumatologist appointment a few months ago where I was diagnosed with RA as I expected, and started on methotrexate, which has had a transformational impact on me.

Basically, I first suspected 'something else' in the way that my letter from rheumatologist to GP was worded. There was a whole standalone paragraph about has hair loss/denies mouth ulcers/has had dry eyes for years but thought it was allergies/had eczema and now has very dry skin, has had Raynauds since childhood, has gastric symptoms which prev GP said was IBS, longstanding photosensitivity that sort of jumped out at me.

And in all my googling about RA and AI I read about Sjogrens and it really REALLY struck a chord.

Then all my blood tests started popping up:
positive ANA, homogeneous and speckled
ENA-Ab positve
Ro (aka SS-A) positve
U1-RNP , SM Abs, La (aka SS-B) all negative

So I googled, and I thought that indicated Sjogrens?
Then more googling told me about sinus problems, nosebleeds - which I had for DECADES.

And I should probably stop googling as I am not a medic!

Gosh. Your results & symptoms mirror a lot of mine particularly when I'm in a flare! I was SSB La positive, now negative. Ro always been positive. What is your ana titre? I'm presuming your rheumatoid factor is high? I think it looks like secondary Sjogrens maybe. Autoimmune conditions can cause hair loss but so can some medication. They can also take time to manifest, not show in bloods (seronegative) or go up/down, positive/negative. There are overlaps too ie a bit of RA, lupus and a bit of Sjogrens; mixed connective tissue disease. I think rheumatologists will record all signs & symptoms of autoimmune disease to build up the history for a possible later diagnosis given the changeability and time they can take to show up. Good luck 🤞

Yeah it's really horrible stuff. I got told the injections would be magically loads better than the tablets but that doesn't sound like it would have been the case!

I've been given sulfasalazine to try but not dared take it yet. I don't want to be ill

I have peripheral spondyloarthritis which mainly affects my fingers, wrists, feet and toes. I was diagnosed nearly 20 years ago and really struggled for the first 10 years but it’s well managed now with just Sulfasalazine and pain killers. It’s definitely worse in the cold weather so keeping warm is vital.

@DestroyEverythingYouTouch I went straight into the injections (I didn't even want to try the tablets).
I've had no side effects whatsoever, so you may be ok

Can I join? I have psoriatic arthritis, developed it very suddenly after having my son five years ago (although I've had psoriasis since childhood). Recently moved and been waiting ages for a rheumatology review 😖

Thanks so much for starting this thread, it's helpful to talk to others that understand. My recent discovery is compression gloves- I wear them at night and I'd say my hands are 50% less painful in the morning than they were without, just in case that helps anyone!

@DestroyEverythingYouTouch I'm sorry to hear you've had such a rough time on methotrexate 😔 I take sulfasalazine, obviously I can only speak for myself but I only had very mild nausea/slightly unwell feeling for the first few days and now have zero side effects at all. The only thing I've noticed is that it turns your wee (and tears!) a very fluorescent yellow/orange. Hopefully you find it better than methotrexate.

Oh that's reassuring. Did you not get on with methotrexate?

Good tip about the gloves! I should be wearing wrist warmers to bed at this time of year but I keep forgetting.

I've just bought first pairs of compression gloves this evening from Amazon. So that's exciting 😄 I've only bought the cheaper ones, so let's see how they fair.
If my hands are even slightly better in the morning, thatnwill be a huge win.

In other health related news, I did my Our Future Health test thing today, so I am doing my bit for future cures for us all. You're welcome guys!

@CherryRipe1 thanks for the solidarity and not telling me I'm not going mad! My next (ie 2nd) rheumatologist appointment isn't for 2.5 weeks so I won't get any answers any time soon. I didn't mention dry mouth. How stupid is it is it I don't actually know if my mouth is dry! I drink water constantly as I'm a bit of a mouth breather so maybe I'm already 'self medicating'. Didn't have the dry eye test done ? I'm so squeamish about eyes that even the thought gives me the horrors. I

Just a quick hi as I've spotted this thread on my way to bed
I've had RA for over 26yrs I was diagnosed at 19, have also got OA from RA damage
I'm currently on MTx & Tofacitinib, Celebrex & pain relief but I've been through a few DMARDs, Biologics and Jax inhibitors on my journey
Will try to read a few more posts this weekend and respond with something more appropriate

Hi @wonkylegs

Ooh, another veteran! Hallo wonkylegs !

I had a huge pile of hair fall out this morning. I'm gutted. I've now lost way over half.
Do I have to choose between hair and pain?
(I also had the worst bowels in ages. I've been OK with the methotrexate injection for the 1st 3 weeks, but this one has hit me hard. Or something else has?)

Is hair loss seen as a valid reason for moving off methotrexate?

I've never lost any hair on methotrexate only Rituximab.
Try wella senso calm shampoo. It great and at TK Maxx sometimes or amazon.

I upped my folic acid from once a week to 3 times a week at my rheumatologists suggestion for hair loss and it does seem to have helped.