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.

Deep sympathies to those struggling . Have been away for a couple of days and Rheumatology kindly upped my Etoricoxib to get me through as have been flaring and I am going in tomorrow for medication review. I think it will be methotrexate as Sulfasalazine takes the edge off but that’s about it.

Have had a lovely time but am not looking forward to flight home later on Ryanair seats, thank goodness it is only a couple of hours. Need to go to the toilet but the idea of standing up is not appealing as I know it is going to hurt more than it does already!

Seatoverhere, I hope you get proper help soon. It doesn’t need to be like that. I’ve been where you are now and am now in remission with both methotrexate and adalimumab. I have a normal life again (as long as I don’t eat tomatoes or do anything like running/aerobics). I was on etoricoxib too and now I don’t need them. Push for further meds (I had to stop sulfasalazine as my blood count dropped so much). Sending you hope and strength x

Thanks @icanatilldancetowhigfield and that is so encouraging to hear. I’m starting methotrexate next week, just going to recover first from whatever I caught on way home.

Normal life sounds amazing and hard to imagine . I am significantly better than I was now I have a new hip thank goodness and Sulphasalasine has taken the edge off but a lot of room for improvement. I’m slowly losing weight thank goodness and hope the combination of that and methotrexate will make me a new woman by this time next year 😀

Hey everyone! Just wanted to give an update re the methotrexate because I know I read a million of these threads...
I was so bloody worried about feeling ill on the 15mg MTX. Especially since the super kind sulfasalazine did me so badly. But I took it, antisickness in hand and it was... fine? I felt a bit nauseous which stopped as soon as I took the antisickness. Not much of an appetite and a bit tired and wiped out but considering I was expecting days of feeling absolutely god awful it really was fine.
GP has prescribed more antisickness for the coming weeks and the rheum guys have said if I need to use them next time then we quit and move to jabs. But honestly I'm so bloody relieved!

That’s very encouraging @Orchid887 . Really pleased to hear it is ok. I picked mine up this morning and will start Monday most likely as recovering from a bug and have a friend coming tomorrow.

All very positive. That is great news. Good luck on things staying good👍

Hope it went okay @Seaitoverthere!

I had an OT assessment at home today. She was so lovely and listed so many things that could make life easier but I've come away from it feeling a bit down about it all. Just the fact that aids and adaptations are needed is wearing me down. I'm hopeful that in a few weeks the MTX has me laughing at myself for considering them!

Thanks @Orchid887 , haven’t taken it yet as still feeling a bit rough.

That’s difficult with the OT. I needed lots of aids when I was at my worst and they did make life easier but it felt weird needing them. We moved and renovated so things have been done with a view to the future now. We didn’t take the second handrail on the stairs down that was up for previous owner, the shower is a good side walk in one and there is a shower stool around though I didn’t use it, the toilets are the higher ones and the fuse box was previously upgraded with a spare circuit for a stair lift. Will be getting pull out drawers for the kitchen cupboards.

There are grabbers around the place, a couple of walking sticks and crutches. I don’t currently need them but they are staying just in case. I did find it really difficult needing it all so totally get it.

Sorry you're still feeling rough!

It sounds like you've got a good set up now. It really is tough seeing all these things. Working in healthcare I've seen them implemented but I think it had suddenly added to the shock factor of how bad things have gotten.
Plus side (as always) is they gave me a cool little grabber and even if this horrible disease magically lifted overnight I am absolutely keeping this in my life. Even the cats like it!

I think I overdid it the past couple days. The pain today is just incredible. If I had this sort of pain anywhere else I'd be sat in A&E. Feels like I've broken my wrist and my knee is more painful than it ever was when I dislocated it. I've got a big presentation to do tomorrow and today had my first real "this is brain fog" moment. I work at three different hospitals and always go to the same one on the same day. This morning I had to pull over because I couldn't remember what day it was or where I was going. Took me so long to work it all out and I've felt off all day. Doesn't bode well for said big presentation...!!!

Equally the pain was similar yesterday when OT came which makes me feel like a fraud because they saw me on a bad day. It's all a lot to get my head around and I think until now, I've just carried on with the processes of managing and treating and not given it too much headspace. Last couple days it has hit me like a ton of bricks.

I’m so sorry @Orchid887 and really hope the pain improves very soon. I think there is something about working in healthcare and then being on the other side of it suddenly. I used to work in a rheumatology department back in the day for a few years (when they still used gold for treatment ) and when I was at one of my appointments after diagnosis she asked me how I was and I just burst into tears. Really surprised me as it came from nowhere but I think a big part off it was sitting in the patient’s chair. Fingers crossed for your presentation today, I hope it goes well.

What’s great is the bathrooms look totally normal and the one by my bedroom I use all the time is definitely the nicest we have ever had. If anyone is doing their bathroom at any point I recommend a Burlington Regal toilet unless you are very short as they are a really good height. The shower is a surface mounted one which wasn’t on purpose and just the style of it but really helpful as something else to hold onto. I did find a nicer looking shower chair but didn’t get it as didn’t need it. Everything is now out of sight but there if needed. The handrail has been painted white and blends in and the staircase is quite wide so you don’t really notice it but helpful on bad days.

Felt a fair bit better by last night finally and took my Methotrexate so am trying to get lots of fluids down me as have read it helps. Fingers crossed.

I've got some big news. I finally took one of the sulfasalazine tablets yesterday after being prescribed them six or seven months ago. Methotrexate made me almost instantly violently unwell, so I haven't had the courage to try another DMARD for several years now.

I have not been sick or even felt nauseous! So whatever other side effects might come, at least ending up in hospital with dehydration again doesn't look like it's going to happen.

My joints are in an absolute state so I finally got to the point of thinking ok I'll risk it. Fingers crossed for me that it takes this inflammation down, please!

That’s an encouraging start @DestroyEverythingYouTouch , fingers firmly crossed for you. That is horrific with the methotrexate, you poor thing.

Thank you! I can't even tell you how much I've gone over and over the decision to try these tablets. It's literally been years of weighing it up.

The relief of realising that I am not going to end up back in A&E is gargantuan.

I'm crossing my fingers too, Destroy ! I'm on week 3 now of Sulfasalazine, so just one bit ahead. Seems fine so far but my wee is illuminous.

Did any one else LOSE weight with all this? Ive dropped about 3 stone since the summer. OK, I had the first bit to lose but I'm now a bit thin looking. I've just done a sample to check for pernicious anaemia (that's fine), and also coeliac and IBD.

Yes I lost weight with it . Noticed all my clothes hanging off me and was a size 6 to start with. Not sure if it’s part of the inflammatory arthritis or the stress I had been under.

Blimey, you were a 6 and still lost weight? Did it come back? I even lost weight taking steroids. Reading this thread back, a couple of others lost weight too.

I sort of wonder if I've messed my bowels up! I've gone from taking no medication (apart from ibuprofen), pre-Sept, to now taking so much. Just remembering what I need to take and when is a task and a half. I'm really anaemic too, so trying different iron meds, and they are not pleasing to my bowels at all.

Which leads me to a question I've be meaning to ask the thread for a while...
Does anyone claim PIP for arthritis?

I'm wondering about trying to claim. My legs are OK is at the moment, but I have damage in my hands, wrists and elbows that's now going away, and I'd probably/maybe qualify for Daily Living part, as I struggle with lots of things like cooking, showering...

Yes I was a 6 I was really scared I had cancer to be honest . Drs did the blood test for ovarian and did a bowel test but came back negative. I saw a dietitian before I was diagnosed with the autoimmune disease and she told me what to eat and prescribed shakes which I am still taking . The things I was advised to eat were not exactly anti inflammatory so I am going to speak to her again. My weight has stabilised but not really put much on but at least have stopped losing it. I put a claim in for pip previously for anxiety and depression but was not awarded it . I haven’t tried again since this diagnosis . Might if I thought I was entitled to it though.

I'm also wondering about claiming but I'm frightened of the horror stories.

My hands are an absolute mess so I really struggle with literally everything. I can usually manage to cook by the evening when the swelling has reduced but I'm so clumsy that it's dangerous. I try and hold things tightly but I often end up flinging it across the room. When that might be a heavy pan of hot food, it's really concerning.

I do struggle with my weight but I think that to do with being on benefits and having to skip meals because I can't afford anything that's easier to make. Sorry TMI, but I also get terrible diarrhoea every single day as well so that doesn't help.

I've just done it again. Managed to drop a spoonful of marmite. I hate this :(

Bucking the trend I put on taking Sulphasalazine. Only a pound or two but I was actively trying to lose and in calorie deficit and would have expected to lose about 6lbs so put on about 8lbs in total but it did come off in time. I’m a bit worried about the same happening on methotrexate.

I get the basic daily living for PIP but it is due for renewal soon and I won’t be renewing it as have improved a lot with hip replacement and Sulphasalazine. At the time I was on 2 sticks and couldn’t go anywhere or do anything. I still get floored and am pretty much bed bound for a day or two a week but hoping the methotrexate might sort that in time.

I have also been up and down on the PIP thing. I decided to apply one morning when my mum had to come help me do the very basics of daily living. I figured this is what it is here for. Then when I got prescribed sulfasalazine I thought I'd be all sorted and totally fine 8 weeks later so didn't put much more thought to it.

But since that didn't work, and I've now had to have OT out for the adjustments, I've been back at it with the application. My theory is on it all is that everything is so expensive. Buying a kettle to give me a shot at making a cup of tea, or all the gadgets to help me cook or dress, and all the extras of things like pre chopped etc.. I notice we go without necessary things to enable us to get this stuff.
But honestly I'm still on the fence as to whether it'll come to anything. What would be more beneficial is a blue badge!

I definitely notice the extra expense. I absolutely have to keep a car running. I have an old reliable car but it still costs me a fortune relatively.

I'm still getting on ok with the sulfasalazine, although I'm convinced every last thing is a side effect. I'm not in panic mode over anything but I've been googling for information a lot.

I've had the odd headache although it goes away if I drink a big glass of water. I've got a bit of indigestion but not heaps. Also a bit of stomach pain but off and on. So actually it's turned out much better than I feared. So far...!

I'm so glad it seems to be settling well with you! So many people say it is the kindest of all the drugs and can be a miracle worker. I so hope it is for you!

I'm on my 4th week of Sulfasalazine (tomorrow) and it's been notntoo bad so far for me, guts-wise. However, my insomnia seems to have increased a bit snd I got the dreaded message that my bloods are a bit off so need to repeat...

But in exciting news, look at the Aldi specialbys next week! It's... aids for some people who now include me! I'm tempted by the kettle tipper. I already have a sock thing and a button thing!

https://leaflet.aldi.co.uk/week-17-digital-leaflet/page/40-41