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.

@Orchid887 I'm sorry to hear you've had lots of bugs but it's good that work has improved. What are you doing now?

I'm ok: also had a d&v bug that came from nowhere and a really stressful couple of weeks at work.

I haven't started my tablets yet as I was waiting for the 6 weeks summer hols - so tomorrow is the day. I'm nervous!

@Loafbeginsat60- I'll be in a non clinical role as a Practice Educator now. So non clinical and no rushing around on my feet! (Not that I've successfully rushed anywhere for some time..!)

Oh gosh I'm sorry to hear about your bugs too. It's bloody awful!

How did it go with the tablets? Hopefully a pleasant surprise for you!

Oh that's really good news. I hope you enjoy it.

Well - I took them Monday night, felt a little queasy going to sleep but slept all night. Woke up, took the dogs a big walk / swim, checked the sheep (big hill walk) and cooked dinner. The usual stuff and felt great. My knees are sore and stiff but the swelling hasn't come back since my last steroid.

Felt a bit tired waking up today but literally nothing else. Surely this can't be true!

@Loafbeginsat60- It could well be true!! I was terrified of the MTX, especially after my nice kind benign drug made me so unwell.. but it was a lovely surprise that the most I fely was as little tired.

So glad it went well for you, and hopefully soon enough that queasy feeling will be gone too.

That sounds like a very productive day, I'm excited for getting some productivity back in my life. My small course of oral steroids didn't last nearly as long as I'd hoped.

Just popping back here because I am starting mtx on Sunday.
Ironically I'm feeling really well just now but I've had two years of flares and the last one seems to have left some lasting damage to my hip.
I'm very nervous. I am prone to gastric problems though fine just now. I asked about going straight onto injections but they said no.
I've been given folic acid 5mg daily to take 6 days a week.
Just wondering when do people take the folic acid for best effect and does it cause any issues?
If I take the methotrexate at night would you take the folic acid next morning?

Good luck Boope, I hope you have a similarly positive experience as me! Mine also insisted on starting on tablets but they changed me to jabs within a couple weeks at my request.
I take my MTX at night and then folic acid the following night (I always worried I'd feel sick from folic acid too and know I'm reliable with evening drugs because I can sleep through any issues!)

Thanks @Orchid887 . It seems odd that folic acid is supposed to ameliorate side effects of MTX including nausea and yet can cause the same!
I have to have bloods done in 2 weeks and have a follow up appt in September.
The consultant knows my gastric history because I had to stop alendronic acid for the same reason. I suspect it's partly cost and partly workload. Apparently GPs can't prescribe the injections but can prescribe the tablets. So I would have to collect from hospital pharmacy which is a bit of a trip.

To be honest I'm not sure it did cause any nausea... I just massively overthink morning meds just incase.

Not technically the case, as my GP has just taken over shared care for my MTX injections. So it's on my repeat prescription to order as I do other medications.

It's quite common actually. So hopefully that's some misinformation and once you're across onto jabs and on a stable dose they can do it to the GP.

Ah thanks that's useful.
I just checked my local trust shared care agreement for mtx injections. Written by my rheumatologist and it says secondary care retain responsibility for injections unfortunately.
While I was looking I found something that says there must be 24 hours between folic acid and methotrexate. So I'll stick to evenings and hope it goes well.

Oh that's so frustrating, especially if the hospital is further away! Mine is quite the drive so thankfully while they were still supplying, it was sent my courier to my GP practice.

Took my first dose of mtx on Sunday, 7.5mg. I'm also on 5mg daily folic acid.
I've had nausea from Sunday night then from last night a burning / acid feeling in my stomach. Disappointed but not surprised as I have recently been prone to gastric problems. Also very tired.
I'm awaiting a call back from the nurse who I'm sure will say persevere.

I read something today on a medical news site I get emails from about something that counteracts the nausea effects of methotrexate but can't remember what. Must try to find it again and let you all know.

Just can't find it but it might have been folic acid which you probably all know about, there was anti emetics mentioned and I remember something about injected methotrexate is better than tablets for the nausea side effects. Not sure if the NHS would do those or if it's self administered.

I have been diagnosed with RA about 3 years ago. With Mtx 15mg for last one year, having some semblance of normalcy. In this time, my bad cholestrol have raised a bit and I have put on slight weight, although to be fair I had lost a lot of weight after my diagnosis and before starting mtx (possibly my RA wasnt getting controlled as good as it should have been). I have also gone through menopause in the last 2 years. So who knows why my bad cholestrol have raised but otherwise mtx has put me in remission for now.

Gastric side effects from the lowest possible dose of mtx very unpleasant, plus increased fatigue. I have to wait two weeks and they will switch me to injections. I struggle to see how these symptoms can last so long just from swallowing tablets, I suspect it's the action of the drug and injections won't make much difference.
My RA is intermittent. When I get a flare it's excruciating but usually short lived and in between I feel fine. If this is how methotrexate feels I don't think I want to stick with it because there doesn't seem to be any respite from feeling rubbish.
Has anyone else given up? How did the rheumatologist respond?

I switched to injections relatively quickly, but in hindsight I wish I'd done so sooner!
I felt shite with the tablets but no where near as bad with the jabs. I feel a bit hungover the next day, but the stomach ache, nausea, appetite loss etc is gone.

Why do you have you wait 2 weeks?

I found it it's Leucovorin, a specialized form of folinic acid on prescription from the GP. You may already be on this but if not it might help the side effects of methotrexate.

That's reassuring. It's nearer 3 weeks actually. Postcode NHS and dire state of rheumatology.
There's no rheumatology at my nearest hospital, they visit once a week. First appointment there was 6 weeks. I said I was willing to travel so I've got one at the hospital an hour's drive away mid August to be swapped to injections.

@CherryRipe1 thanks I'll look into it.

I didn't need to see anyone to swap.* I spoke to the nurse on the phone, she said I could swap, and sent me some info about injecting and I had to say whether I needed an appointment to teach me to inject, or I could do it. I could do it.

• I think I maybe go the other way and struggle to get seen! I can leave a message for the nurses, and hope they call me back.

@TheSpottedZebra Yes there's an answerphone for the CNS and they ring you back ... eventually. It's only an appointment with the nurse, the actual rheumatologist is a year behind but will see you in a crisis.
I imagine they are some kind of pen device? I'm sure I could manage but she didn't give me the choice, just an appointment.
I'm due my next tablets tomorrow and dreading it as the nausea and acid stomach has got worse as the week has gone on.

Yep, it's a pen/auto-injector. Honestly it's so easy. You just take the lid off, hold the business end firmly against your body (thigh or tummy basically, but i only do thigh), and wait for the click. It's so quick and so easy.

MUCH easier for me, as my hands are quite affected, than popping those tiny little tablets out of their packet! Deffo switch if you can.

Hi 👋 I’ve recently been diagnosed with erosive inflammatory osteoarthritis in my fingers by a consultant rheumatologist. He painted a fairly bleak picture with nsaids and steroid injections being my main option.
My older sister has it and my mum also so it feels kind of as though its inevitable.
I’ve also got POTs and am hyper mobile and always felt that these were linked but there was no mention of these…
I’m also have had a number of issues with tendinitis and again there seemed to be very little known or mentioned about this.
I’m really just wondering if anyone else has anything similar or any advice or suggestions where I could get advice?

I haven't been diagnosed with that specifically but I do have RA and osteoarthritis and my hands are badly affected. Fingers bent, knuckles swollen, always painful. I also get tendinitis a lot which I think is common with RA.

NSAIDS work very well but I can't take them orally. Diclofenic gel (brand name volterol) is helpful. Steroid injections or steroids of any kind will always help a bit.

Thanks @Boope - my Rheumatoid factor wasn’t high enough to be considered as RA but I remain unconvinced due to the tendinitis issues. I don’t seem to get on with ibrupofen orally either so will try Volterol ☺️

I've got Sjogrens, pots, Ehler Danloss hyper mobility, osteoarthritis/spondylosis and non sfn nerve pain. I think they're all linked and cross over with fibro, neuro diversity, small fiber neuropathy, lupus , endometriosis & probably RA. I read a study that a raw vegan diet put a large proportion of women with lupus into remission so that's what I did under guidance and a lot of my symptoms subsided particularly the Sjogrens dry eyes & mouth, sweats, joint pain, arthritis, pots & fatigue. I can't say it was definitely the vegan diet (I'm off it now), maybe it was hydroxychloroquine put me in 'remission' but I'm off that now too. Maybe it will flare badly again. The raw vegan diet was tough going with a horrible detox flu that I was warned about. It's nice to not have to use dry eyes drops and mouth gels constantly and joints a lot more mobile now. I'm never going to be young, spritely & totally well again but at least not bed bound as I previously was.