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.

Hi I've just seen this thread.
I was diagnosed about 10 years ago with Palindromic Rheumatism. It's an unusual auto immune condition that usually changes to RA.
After a couple of years it was confirmed as Rheumatoid.
I take hydroxychloroquine which for many years did a good job on it's own.
Sulphasalazine was added in 4 years ago. Unfortunately it gave me headaches at the proper dose so I only take about half the normal dose. No other side effects though.

On top of the RA I have osteoarthritis, a lot of wear and tear on my spine and fingers.
It's sometimes hard to tell the difference and some HCPs don't believe me when I say I know which one it is.
I'm really struggly ATM with painful toes and feet. My toes feel like they are in a vice. I'm pretty sure it's OA because my inflammatory markers were very low at the last test and I don't have the other symptoms that go with RA. I'm using diclofenic gel and paracetamol but walking is painful.

Should have seen my rheumatologist last August but he's running 12 months behind with reviews

@Orchid887 I started sulphasalazine on a very low dose, I think one a day, titrating up after a couple of weeks. No nausea or gastric issues.
I found that once I tried to take 3 a day I got headaches. I dropped back down to two and was ok. No matter how I tried I couldn't get to 3 but it was working. I ended up on a regime of 3/2 alternate days.

I’ve had blood tests and the rheumatoid arthritis can back fine, but then I was tested for tissue tranglutaminase. Not sure why I had that test? I thought they were going to test for all three arthritis’s.

I can't tell you the difference that giving up nightshade plants has made to me. From inflammation to very little inflammation. Pain to little pain.
It's been a revelation. There's no medical evidence for it but plenty of anecdotal. I'd recommend that anyone with any form of inflammatory inflation give it a try (unless there is a specific reason not to).

Hi I was diagnosed with psoriatic arthritis and spondylitis a couple of weeks ago. I was put on hydroxychloroquine before diagnosis which hasn't done that much. I was going to start sulfasalazine but because the inflammation is in my spine I have qualified for biologics as sulfasalazine doesn't work on spinal inflammation. It was a long year of tests and scans last year. Hoping starting Benepalli with give some relief although I also had a steroid injection a couple of weeks ago which I am not sure how much it has helped.

Omg
Gave up potatoes in November (all started by accident).
My wrist has unproved 95 %
I had a cheese toastie and tomato soup ( not usual choice ) and it's taken 24 hours for my other wrist / hand to calm down.

It's amazing, isn't it @TammyJones?
I don't think for a minute it would help everybody but as it's so easy to do, I think everyone who can should give it a go.
I find I can have the odd bit of nightshade but I used to eat a lot of tomatoes and chillis and while I miss eating them it's in no way worth the pain.
Edited to say, it's a bit like gout is my simple understanding of it. The nightshade causes a kind of acid to accumulate in the joint. With gout, it's crystals.

@whydoesitalwayshappentome not sure when you started it it took a good 3 months for hydroxychlorqine to work for me. It also takes 3 months+ to wear off.

@Boope I started it at the end of August. My rheumatologist is going to keep me on it for at least three more months to give the biologic time to kick in.

same for me, but I love tomatoes and potatoes and used to eat loads, it’s not fair!

I am a vegetarian so eat a lot of tomatoes, courgettes, potatoes and fry most things in chilli oil. It will be hard to swap a lot of tomato based dishes but willing to give it a go.

This sounds really tough. I'm eating my words about being lucky on Sulfa.
I started it a few weeks back. One a day was absolutely fine and caused no issues. Went up to two and immediately had to stop because I came down with flu and I was so nauseous and felt so unwell anyway.
Started a couple of days ago again and the headaches and nausea are unbearable. Especially looking after my 3 year old, and God only knows how I'll manage it back at work on Monday, for a ten hour clinical shift!

I'm just so desperate for this to work. Methotrexate just wouldn't be an option if I wanted to try and conceive soon, equally unless all this gets under control I've no hope of going forward with the IVF anyway!

Feeling particularly fed up today, especially as the flu has given me a bit of a flare up, despite the steroid injection only having been just under 4 weeks ago. Feels like I'm wasting the time it should be making me feel good!

@Orchid887 I was encouraged to go as slow as possible. Can you stick to one for a few weeks?
It really does take 3 months to work though so you shouldn't really expect any benefit for a while

Oh no, I was really hoping that it was going to go smoothly for you! That must be so frustrating.

Has the nausea eased off now you're not taking them?

I think I'm going to have to stop them. I feel just as unwell as I did when I had "flu" and couldn't even get up today. I'm dizzy, headaches, heart rate through the roof, fever, hurting everywhere.. it's literally how I felt before. I'm not sure I ever had the flu, I think it's just a reaction. Which only really clicked for me when I finally arose half an hour ago and I'm covered head to toe in a rash, with hives everywhere on top.

@Nonametonight - I don't want my current experience to put you off at all. It seems I'm having a reaction to it, and couldn't find much online about similar experience so believe it is usually very well tolerated!

Can I join please.
I’ve recently been diagnosed with Ankylosing Spondylitis, after specific issues started arising last summer. But when I look back I’ve had issues with my back for 15 years or so, but they have always treated them as one-offs. But now I wonder if it was all connected.
Anyway, I’ve started physio and am seeing my GP soon to hopefully get the NHS rheumatologist referral.

Welcome to the club!

Wow I am amazed reading this, this is me!! I have been calling it a severe tomato allergy ever since I got RA. It’s changed everything avoiding them really strictly. The smallest bit of tomato and I’m in horrendous pain in random joints. Feel such comfort hearing others the same!!

Hey everyone. How are you doing?
I've had another course of oral steroids which has helped a bit though unsure how long I'll feel good from them. I've finished the course and already things are creeping. I have agreed to start Methotrexate and put trying to conceive at the back of my mind for a while. I cant carry on like this!

How did everyone get on with MTX? I am starting on 10mg tablets and they have said to have a low threshold for moving to the injection because I often feel nauseous on medication and really don't cope well with that! I've also been referred to an OT so hopefully they can offer some advice.

Hope everyone's okay.

Hi @Orchid887

I had some steroid injections in my hips recently. It sent me a bit loopy one evening because it messed with my hormones. My friend had a steroid injection around the same time. She's my chronic pain buddy. She ended up having two periods in a month and has been very up and down. Neither of us think we would have this again.

I have had oral steroids before though and didn't have this problem, so I don't want to panic you.

I didn't get on with methotrexate at all. It made me very sick, but it's easy to make me feel sick. I'm supposed to be starting sulfasalazine, but I'm still too scared.

Would your doctor prescribe you some anti sickness tablets? I sometimes have cyclizine and it really helps.

I hope you're doing ok. These drugs are hardcore so I understand that it feels like a big step.

Hi @DestroyEverythingYouTouch. Sorry to hear you both had a rough time with the steroids. My IM steroid felt bloody fabulous for around 6 weeks, but as things got worse my GP prescribed a 40mg a day dose of oral for 5 days. Which worked a charm but very much stopped the rheumatology nurse from considering any more. I have been treated with steroids quite a lot in my life as I get asthma flares so the longer terms effects are also heavily weighing in my mind. So I agreed with her decision.

Still, I'm struggling so much and can't imagine how I'll manage over the coming weeks. Especially if MTX isn't kind to me!

I am also someone who seems to feel quite sick easily. Which is what I blame my two hyperemesis pregnancies on. A cruel joke for someone with such a phobia of nausea/vomiting!

I've just re-read my clinic note and I'm not starting on 10mg, I'm starting on 15mg. I've got childcare in place for the following day and overnight after I've taken it so hopefully I can wallow. Though they are waiting for chest xray report before they can prescribe.

My GP has been good at things like this so I may give them a little call and ask for some standby meds. Though I do have cyclizine knocking around from the hyperemesis.

Thank you, I think I'm a bit wobbly to be honest. I've gone from trying to grow my family to struggling to get off the loo! But I'll get there I'm sure. And in the meantime we plod on!

I had Sulfasalazine and initially it was absolutely fine! I did turn out to be allergic to it but when the Rheumatology nurse discussed it with me she said it was a shame as it is normally so well tolerated. So hopefully it's fine for you!

@Orchid887 I also struggled through multiple pregnancies with hyperemesis, but actually methotrexate was nowhere near as bad. More a vague hint of nausea! It only really got to the point where it was impacting my daily activity when I was on 20mg. My rheumatologist suggested taking folic acid every day (except the day I had methotrexate) rather than once a week and that helped a little as well. Worth asking about alternative regimes for folic acid alongside.

Ooh hello! Im starting sulfasalazine soon too! I've been on methotrexate since Sept, I went up 20mg p/w but it was too much for me. So I've dropped back down to 15mg and I need to add in sulpha too. I just need to pick it up from hospital pharmacy...

It was that or lefl.... and I couldn't bear the thought of any more hair loss. Mind you, I've also been having grotty bowels so not really relishing the thought of sulfasalazine either!

And I'm getting my first steroid jab next week in my elbow. Exciting times.

I’ve spoken to my GP today and more results have come back from my blood tests from January. It’s the blood test that keeps on giving. I’ve had an awful pain/tingling, sharp pain and pins and needles in my right arm and fingers since January. My last test came back for ENA screen as borderline. The Gp is referring me to rheumatology for more tests, possibly SLE. I had a nerve conduction test last week and I’m just waiting on the results of that.
It feels like I’m walking through treacle. I’m still in lots of pain daily and the medication I’ve been given doesn’t even touch it. Fed up now. It’s taking too long for a proper diagnosis.