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.

I'm feeling a little overwhelmed today. I saw the rheumatology nurse for my steroid injection and she went through the sulfasalazine stuff, ran some more bloods as apparently something was off last time, and then gave me the jab.

I think it was just a case of listening to her list all these horrible things that can happen and realising that's just from the treatment. Let alone the actual issue! Still, I was alright until then so perhaps it was just information overwhelm.

Oh Orchid, it's tough, isn't it? On the one hand, it's rare to have time for someone to actually talk to you - with me, it just seems to be 'go away and read this leaflet, then leave us a message with your decision' , having someone list all the things that can go wrong is terrifying. I find I turn to jelly in front of medics, what's wrong with me?! I lead meetings at work All.The.Time, yet I go into a Dr's and I forget half of what I wanted to ask. Even though I've made notes.

Side effects are terrifying. And the status quo, doing nothing, is terrifying. There are no two ways about it. But just choose to trust the science, and look after myself as best as I can, and then speak in (on voicemail!) about any issues.

How was the injection, and will you go ahead with the sulfasalazine?

I feel really lucky with the experience I've had with rheumatology in general! They've organised the bloods for every two weeks, given me the medication, explained everything about how we get the next lot etc. But yes it also means they went into detail about every single issue which threw me a bit!

Oh honestly, I totally understand. Hilariously I am a bloody medic and still manage to be like this. 😂

Something absolutely has to be done, there's risk with the treatment but a certainty if I don't take it. So lesser of two evils and hopefully everything will be fine!

I really don't cope well with nausea, but I've got the day off anyway today so I'll be going home, taking the tablet and going back to bed. Hopefully that first hurdle being the trickiest and then it'll be done! The injection was absolutely fine and painless, so hopefully good effect from that imminently!

Thank you for making this group! It was nice to have somewhere to come and wobble.

Sending you the best of luck for the sulfasalazine. I really hope you don't get any nausea x

Thank you @DestroyEverythingYouTouch. It went okay! I had a sleep this afternoon by accident, but fairly sure it was unrelated. No sickness Thankfully!

That's really good - and also reassuring! Were yours 500mg tablets, if you don't mind me asking?

@DestroyEverythingYouTouch - They are, yes. 500mg once a day for a week, then twice a day, then two in the morning and one at night then two morning and night. So an increase over 4 weeks.

That's the same as I've been asked to take. You've got psoriatic arthritis the same as me, right?

I really hope they work out for you. I can't tell you how nervous I am about taking them. I've got quite a lot of pain every day, but I'm so much more frightened about having constant nausea. I don't mind being sick, but feeling nauseous all day fills me with dread.

I am on Sulphasalasine. They do help a bit I think. I take 4 tablets a day currently, having tried 6 which I couldn’t tolerate.

I am on 6 tablets a day. The nausea got worse when I went up to 6, but the symptoms were much better so I took anti sickness with them to counteract the side effects. The nausea settled after a while and now I don't notice any side effects at all.

I think so, though bar the initial "this is what we are looking for on your scans to confirm PsA" and then "yes we found exactly that on your scans", they've not actually referred to it as such. Just "inflammatory arthritis".

Thank you, I really hope so too. Feel like this is a bit of a hail Mary because I desperately want to avoid their first choice of methotrexate while I'm still hoping to grow my family.

I'm exactly the same, the thought of nausea brings me out into a cold sweat.

I'm also a sensitive bean when it comes to medication so thought I'd be a sure thing for nausea. Thankfully no such thing. I even had one before work today and managed a full day with no side effect complaints.

My advice would be a decent meal in the morning before the first one. It helped reduce my fear. I hope it goes well for you and it helps!

I stupidly did lots of reading and hearing that many people don't get much effect from it, so it made me feel a bit despondent that maybe it won't be my fix all drug. But it's worth a try for sure. Especially since I just had 3 weeks off work not being able to turn on the bloody tap, let alone drive and function!

Yeah it's not one that you can do a blood test for. I only got an official diagnosis when I got a huge red swollen little finger to show off.

I would love it to help even a little. I've just opened a bottle of Dr Pepper. My hands are red raw from it. It's so frustrating. All I wanted was a drink and now my hands are killing me.

It's so frustrating isn't it. I'll do the littlest thing (opening bottles is a killer, as is swapping the car seat to a different car!) And be in agony for ages. My ultrasound showed inflammation and hypertrophy which I think is why I got the diagnosis. Along with symptoms and raised inflammatory bloods etc.
The steroid injection has definitely started to help. I noticed this morning that turning out my road wasn't half as painful as it normally is.

I've got a killer headache this evening so snug in bed with my daughter (who's far too excited for our upcoming holiday to even consider her own bed!).

Yes, I have the same little things like that. Some knives and forks are so painful. It's really bothersome.

If it was a steroid injection into the muscle, I found mine really good. I was much better for quite a few months and feeling quite strong and capable. Hopefully it'll be the same for you. I did get a little bit hyper at times but it was ok. It was a relief to have some energy, even if it was a little much.

Trying to chop an onion has been a no go for a while now! It was indeed a steroid into the muscle. I had a bit of a thrill this morning. I really struggle tying shoes normally, I just can't do it! But this morning I tied up my daughters trousers in a bow and things felt so much easier. Part of me is thrilled by this, the other part doesn't love the fact that at 30 years old, this is such an achievement!
I haven't had any of the hyper they suggested I might have. In fact I've gone firmly the other way. But it's nice to have some relief!

Does anyone else feel really tired for a few days after injecting adalimumab? I hadn’t been noticing it but the last few injections seem to have wiped me out! I don’t know if it’s pregnancy related and I’m just feeling more tired generally, but I’m exhausted for a couple of days after!

Yes, sometimes. I thought it was just me.

I've had a recent diagnosis of inflammatory arthritis, but so far I've been managing it with ibuprofen.
The pain isn't too bad really, but I'm struggling with mobility - getting up and down from the floor with my baby, standing up from a chair, going down stairs etc.

Because my symptoms are only quite mild I am having a hard time deciding if it's worth trying sulfasalazine or if I would be better trying a different anti inflammatory.

What I really don't want to do is end up with side effects from the sulfasalazine that are worse than the symptoms of the arthritis

Has anyone been through this?

Sorry to hear this. Totally understand your reluctance. The decision was pretty much made for me as I went from where you are, to signed off sick and really struggling.
I've been very lucky in terms of the sulfa. I had some headaches and nausea when I went up to two a day, but this coincided with getting flu so over all just bad luck! I'd honestly say it's worth giving it a go. I had stiffness and some mobility issues for a couple years before things got this bad, and always assumed it was just one of those things. My scans showed some degenerative changes which is likely from the continued inflammation and this won't resolve now. I also feel like at the moment, I'm fighting an uphill battle to get this stuff under control and get back to being me and playing with my 3 year old!
I think in your shoes I'd be keen to try and starve off the pain ever getting intense. Get ahead of it type deal!
Equally I totally understand that taking tablets that can cause side effects when currently you're not suffering seems mad! But if the diagnosis is definitive it's not unlikely to get worse.
Wish you all the best!

I get that about Sulphasalasine. I was reluctant to start but I was getting some joint deformity in my toe whereas previous to that there had been no joint damage and I got a bit of a talking to from the rheumatology nurse.

I was very worried about the side effects and also weight gain as had read it can sometimes be a side effect for some people and had a horrible experience with other medication and HRT after losing loads of weight and it piled back on, took ages to be able to get the weight moving again and it finally was.

Been lucky with side effects from Sulphasalasine generally but it wasn’t working that well on joint pain so increased from 4 tablets to 6 tablets and couldn’t cope with the nausea so am back on 4. It was suggested I try 5 a day but haven’t been able to face that.

It did affect my weight which went up a pound or two but would have been up about 7 or 8 pounds if I hadn’t been in a calorie deficit. I stalled for a number of weeks on losing then finally started again until the next dose increase.

I think I’m your situation @Nonametonight I might stick to anti inflammatories for a bit and see what happens. It can go into remission for periods. With hindsight mine started after the birth of my 2nd DC and it took me until they were 18 or 19 to be diagnosed and big chunks of that I was in remission from symptoms. It started ramping up nearer menopause and taking HRT triggered a huge flare that then didn’t stop. The joint damage only started the last few years and rheumatologist said a significant number of people don’t get any.

@Orchid887 @Seaitoverthere

Thank you both so much for replying - it's really helpful to talk to other people who have done this

I am worried about causing myself long term damage by trying to delay taking dmards

And I guess if I'm having awful side effects from the sulfasalazine I can just come off it again

I worry so much about side effects, particularly nausea as I've got a cracking fear of throwing up. So I really do understand the worry, especially when you've got a little one to take care of. Having said that, everything I've looked at has said it's usually well tolerated without issue. I figured if it was awful I could stop it so it's absolutely worth a go!

Just a bit of an update on the fluoxetine, which I started this year. I do think it is helping with the pain in my knees and jaw a little and it is certainly giving me more energy to do the housework and not be so shattered after a dog walk. Before I was so tired. However I don’t feel it is doing anything to lift my spirits or my mood I just feel flat. I had a positive experience with paroxetine years ago and that really helped my mood and anxiety. I am going to the Rheumatology clinic at the end of this month so I will see if the consultant thinks I should continue the Prozac or not and would be interested if inflammation levels go down in my blood on it. The Prozac was given to me by my GP on request as I did not want to take methotrexate as advised by rheumatology. The steroid injections they gave me lasted about 6 weeks.