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 responding. I tried a private GP today and she said yes a short blast of steroids would be ideal but she couldn't do it until I'd seen RH - she said it could mask what's going on.
However the private healthcare came up trumps and has given me a cancellation for next Friday. So not so long to wait.

I've been to / called my NHS GP a few times this year and so far they have done one blood test which they said was for inflammation levels but then text the next day to say no signs of infection so all clear. 🤔

He then went so far as to say you don't have RA I think you keep injuring your knee so there is no point me referring you.
Very helpful!

I did have bloods done ten years ago and they showed inflammation markers so I went to rheumatology and got steroid injections as and when required. It all settled down so they discharged me.

I was told by an immunologist that autoimmune diseases can take 10-20 years to properly manifest. Some people have a disorder but are seronegative so that makes it difficult and once positive markers can fluctuate and go negative with or without drugs. That makes perfect sense now about not having any steroids etc to avoid giving a false picture. Great you've got a cancellation appointment, perhaps you can ask the consultant, if nothing specific is found, about steroids being prescribed by the GP in the event of flares as waiting for hospital appointments is too long & you can't manage your work/home life? The NHS GP probably did either esr, crp or ferritin blood tests, maybe ana or rheumatoid factor. Have you had a scan of your hands or any other painful areas as RA should show up on these?

That’s interesting Cherryripe regarding length of time. My life started getting more stressful 2013 onwards. I am just wondering what people are averaging with their inflammation markers? Mine are around 30 I think .

I rang GP to ask what bloods had been done today and they said they only checked for infection as they thought my knee was infected.

That's some good advice re consultant, thank you I will certainly do that.

I'd just had my daughter when I had my first flare up and she's now 12 and I'm peri menopausal so that ties in with it taking years to properly manifest.

It's been really frustrating not being believed by the GP but I suspect t many people go through that.

Sorry forgot to say, the only scans I have had are xray and mri of my left knee. But it wasn't swollen when I had it done as I'd had a steroid injection a month previous

They mentioned thickening of the knee sinew showing up.

@Loafbeginsat60 Have you never seen a rheumatologist? How was your condition diagnosed? Are you in the UK because it's not something a GP would normally diagnose or manage without input from a rheumatologist.

I've had prednisolone (I think prednisone is a US term?) prescribed as a temporary measure in the past until my RA was under control. It works but it's a nightmare to stop and is not good for long term use if there is any alternative.
GPs can run tests for inflammatory markers and Rheumatoid factor, that's something they would usually do before a referral.
Could you see a rheumatologist privately as a one off?

As to prescribing pain relief, my experience is that not much helps. Some years ago Naproxen worked for me - it's very hard on the stomach though.
I've recently had some flares. I've tried paracetamol, ibuprofen, codeine and naproxen. I saw my rheumatologist this week and he said unfortunately prevention (ie DMARDS) is the only way to tackle it.

Edited to add. Sorry I missed a post.
I wonder whether it's osteoarthritis? Symptoms would be similar (I have both) and it would also be improved by steroid injections.

@Loafbeginsat60 See if your GP will run rheumatoid factor, anti CCP, ana, esr, crp, ferritin, hlab27 but the hospital rheumatologist will run these plus loads of others. A scan can show if it's rheumatoid arthritis which usually but not always starts in the hands. I've heard of rheumatologists treating patients that are symptomatic but with indeterminate blood tests, with certain drugs & if there's an improvement then they'll continue treating as if you tested positive for the disease.
@kerstina Epigenetics loads the autoimmune gun and lifestyle/trauma pulls the trigger. Which inflammatory marker is 30? Is that ESR?
Women are more prone to autoimmune conditions and I think it's our chromosomes & hormones that predispose us to them. Pregnancy can protect us but being post natal & menopausal can act as triggers. Maybe it's the dwindling oestrogen!?

CRP reactive protein ? Yes I wished I had taken HRT when I had the chance years ago .It is probably a bit late now. Is anyone else on HRT on this thread ?

@boope
Yes I saw rheumatologist about 12 years ago but as it didn't progress and was being controlled with steroids I was discharged.

It's only really ramped up this last year and this time steroid injections aren't working

Appointment with private rheumatologist next Friday so will see what they say.

Xray tomorrow ordered by my GP to "see what I've done to my knee" 😠

What's strange is today it feels a bit better - I can bend my toe and put a little weight on my leg today

Yesterday my toe felt like it was going to burst and even putting my foot on the floor was agony.

Is this how it goes - flare up and then subside? I'm taking 75mg diclofenac twice a day and paracetamol. I've been resting it for 2 days with my leg up on a pillow - is this why it's getting better?

I'm clueless....!

Wow, your CRP is 30? That's fairly elevated but a friend has higher than this with various autoimmune problems. Mine is 4 so negligible but I have pain from non autoimmune stuff. A friend who used to work in labs and said crp is a very good indicator of whether you have chronic inflammation going on. I think esr is more acute phase. Good point about HRT, I was scared to take it & my menopause was ok ish.

Is this how it goes - flare up and then subside? I'm taking 75mg diclofenac twice a day and paracetamol. I've been resting it for 2 days with my leg up on a pillow - is this why it's getting better?

Yes it can. I get palindromic flares in random joints. Usually but not always, they last about 24 hours and then the joint is perfectly fine.
A CRP of 30 indicates quite a bit of inflammation or could be infection somewhere. I've had much higher but only when I have had infection.

I started HRT last year and since then I've had 6 flares when normally I would have one every other year.

I was worried it could be due to the HRT but doc says not and the patches are likely helping?

Question - now that the flare is subsiding do I keep taking diclofenac twice daily?

Or only use that when it's bad? I don't get any answers from my GP so I don't really know what to do!

@Loafbeginsat60 Are you taking a PPI (omeprazole or similar) with the diclofenac? I didn't think oral diclofenac was still allowed in the UK as it's shocking on the stomach. I would take as little as you can for as short a time as possible because once it damages your stomach it can take a long time to recover. (Bitter experience with ibuprofen which is much milder)

Thank you @Boope I'll stop now then. No the doc didn't give me anything for my stomach.

I'm starting to think his nickname "Dr Death" is quite apt!

Everyone be careful with certain painkillers. My dd got the start of ulcers taking them for endometriosis.

So I had my clinic appointment,I'm off the sulfasalazine now and I have (politely!) declined the leflunomide. I've been prescribed hydroxycloroquine to take alongside my methotrexate. Anyone have any experience of hydroxyclorooquine ? I'm most worried about hair loss and upset stomach type issues. The eye thing is a worry too!

Also I think being referred back to my gp to follow up on chronic diahorrea and weight loss. Now 1/3 weight gone in past 9 months, and I'm also quite anemic. I was tested for coeliac and pernicious anemia and IBD and that's all fine. Also being referred to dietician? I eat loads and have the epitome of a sensible healthy diet, albeit vegetarian.

Just feeling utter shite really. I'm not working at the mo. I really need to get back to work but there is no way I can stay awake a whole day so no chance of anyone employing me. Maybe I need to cry or something in front of the medics to underline how shit I feel but I'm not really a cryer, so...

I've been on HCQ for 10 years. Zero side effects and it worked very well until recently. No hair loss or stomach issues. You need to report changes in vision, check an amsler chart once a month.
I get my eyes checked at the hospital (I think rheumatologist referred me) . I remember the ophthalmologist saying to me " I saw you had RA and are here because of hydroxychloroquine, yet you look fine" I replied " that's because it works".

My Rheumatologist would dearly like to increase the dose but it's weight dependant and I take the maximum.

i’ve been on Hydroxychloroquinine for 8
months, it seems to
work for me, side effects were minimal at first and now none. It does take a while to kick in as I believe it works on a cumulative effect. Sorry you are feeling so poorly, it’s very difficult, please try to explain to the GP just how this is affecting your life, if you are anything like me it’s very tempting to put on a front that things aren’t as bad as
they are.

Thanks both, 2 positive stories!
Boope they don't check your eyes until, you've been on it for 5 years now I'd never heard of the Amsler chart before, but that sounds an easy, reassuring check, so thank you for that.

Menier yep I do put on a front. Silly really, isn't it?! Not entirely sure why I do that, partly its pride, and also sort of feeling pathetically grateful/apologetic for troubling people and taking up their time and the NHS's resources.

From what I hear it’s a well tolerated drug, my friend is on it as well, with no side effects and she has been on it for a good while. Both her and my consultant said it can take 12 weeks to kick in- and that was the case for me. Keep us updated how you get on with it. I feel
like I do the grateful/ apologetic thing too😕

@TheSpottedZebra your optician will do extra checks if you tell them you're on hcq.

Evening everyone. Just having a little wobble tonight really so I've come here, I hope that is okay!
The pain feels unbearable. I'm currently in a seconded non clinical role which I manage with some home working. But that ends now and I'm back to clinical. I did one shift today and they let me just do admission and quiet things. My hand is three times its normal size just from writing 3 reports (we normally do 12 morning and 12 afternoon!)
My rheumatology nurse saw me last week and didn't love seeing my many swollen joints. They've upped my MTX to 17.5mg from 12.5mg.
The side effects of the new dose worry me. Especially as I've been off it entirely for three weeks thanks to a glorious chest infection that just will not sod off.
Is anyone here beyond the chaos that can tell me life will get better?
I've tried SO hard to be positive and find the humour here and there but I really can't tonight. This isn't humorous or okay. It's bloody miserable.

Orchid that's terrible. Can you get back in touch with occupational health at your work and see about extending your home working. Take photos of your hand today and show them.