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.

Also @DestroyEverythingYouTouch... the bloody dropping!!!! I always thought I was just a clumsy sod but I replace my glasses on a monthly basis. It has also happened to me with pans of hot water, leading to a burn on my foot.

I've pushed myself into a huge flare. I wanted to visit some family so I made the drive and my god, I can't move. I feel like my legs are made of lead and I'm more exhausted than I can put into words. All those OT adjustments that I thought were a bit "much" now seems entirely reasonable. Raised toilet seat anyone? Yes please!! I've no idea how long this will last and despite all the codeine in the world, I can hardly function. All from a drive... one that I actually did as a commute for 6 months once.

Oooh @TheSpottedZebra the kettle tipper does look good doesn’t it. I always remember (aged around 9) trying to describe to my rheumatologist how my hands hurt when lifting something heavy and when he asked what things, I said kettle and teapot!

I’m about to start my biologic next week - it’s been a long time coming and I’m hopeful it’s going to help. After Christmas we did a bit of a trial coming off methotrexate and then coming off the sulfasalazine, to see what improved my gut issues. I only lasted 2 weeks off the sulfa as the pain and stiffness came back with a vengeance, however in a way that I can’t quite articulate the rest of my body seemed to like having a break from the sulfasalazine (been on it for 13 years). I’d like to try having another break once settled on the adalimumab.

Oh yes I've also thrown boiling water down myself. Oof painful, isn't it?

It's definitely not just normal clumsiness. I have had to tell people they're not allowed to laugh when I drop something because I'm quite sensitive about it. I was always really nifty with my hands so I don't like being like this and it still makes me sad.

I totally get you with the driving. Long drives are such hard work.

A couple of things I have in my car - a heated car seat. It's one that plugs into the charger. Being able to press my back into something heated is really soothing. Then I've got fluffy covers on everything, with a sheepskin steering wheel cover. And I never drive without lined leather gloves on. Clarkson it up 😁. That really takes the pressure off my hands.

It's all fairly cheap to get - although there's that disabled tax again!

The kettle tipper thing looks great, will pop into Aldi today if it's open & see if they have any. I got one of those el cheapo rechargeable spin scrubbers with a fluid squirting chamber off eBay. Brilliant for cleaning! Takes away all the hard work and scrubbing. Can do the bath, sink, shower & mouldy ceiling easily now. I'm going to get extra heads for the kitchen hob, sink, oven etc to keep things separate/hygenic.

Noooooo, CherryRipe1 (are you Aussie?) , kettle tippers et al are next week, Sunday 27th ! Hope you didn't have an unnecessary trip?

@TheSpottedZebra I used to live in Melbourne and Brisbane & me & dd1 love Cherry Ripes! I actually wanted cherryred as a user name but it was taken. Ah thanks for the heads up, it wasn't a wasted journey because Aldi is very near my house and I had to go in there anyway plus rheumatologist says to try to keep walking. I was scouring the middle aisle and saw other useful things, washing up bowls with an integral plug so don't have to physically tip the old water out are very handy. I'll look out for the kettle tipper next, week-thanks.

I had a bit of a fall stupidly attempting a bath last night. I knew deep down it was dangerous cause my knees, ankles, wrists and elbows were so stiff and I can never safely get in and out the bath at the best of times. Really shook me but luckily I’m ok.

Currently on a 7 week wait to see the rheumatologist again. Praying we go down the biologics route as I’ve failed on two DMARDS now.

I'm on annual leave this week and I’m utterly exhausted. I have so much I want to do at home but I’m absolutely floored. Oh and it’s still Easter holidays here so the kids are at home 😩

Oh no @Beaniebeemer- I'm so sorry to hear about your fall. I had a similar one not too long ago when a sudden agonising wrist pain meant my hand slipped as I was supporting myself off the loo. Bloody awful!

I hope it was on the way out of the bath and you managed to enjoy some warmth?

The wanting to do so much and yet being capable of so little (mostly because I sleep or lay every spare child free moment) is so frustrating. I hope the rheumy has some good biologics for you soon!

I'm still getting on ok with the sulfasalazine, although I'm yet to go beyond two tablets a day.

I wasn't prescribed folic acid with it, which I was when I was given methotrexate. Is everyone else on a DMARD prescribed folic acid with it? Would anyone be able to tell me the dose?

I've got some cheap ones here which I've been taking four at a time. I do feel relief from them, but I'm not sure I'm taking enough or too few. The ones I've got are 0.4mg. I think the ones I was prescribed were 5 something.

@DestroyEverythingYouTouch folic acid is only really needed with methotrexate as that particular drug depletes folate - hence supplementation. My folate levels when not on methotrexate are fine.

I was given 5mg per day of folic acid when I started sulfasalazine but this was only as I was hoping to try and conceive on it. It wasn't needed otherwise. Back on it now I'm on MTX and I've just switched to the injections of that.

I definitely feel a bit less odd if I take these folic acid tablets. It could be psychosomatic but it's taking the edge off so I'm going to carry on.

I thought it was 5mg. Thank you!

Hey everyone! I hope you're all doing well and managing. Just wanted to come with a little update on those who were considering PIP. I read a million stories of lies in the reports, no points etc. I applied because things got bad and have sadly stayed bad, but I was ready for a dehumanising experience and coming out with nothing.

I had my assessment a week ago and the assessor seemed nice. The report went to the DWP the same day and I requested a copy. All I had in my head was "beware the smiling assassin!".

However, the report could not have been more accurate. He has stated everything and in each section has written "you've said this and that is consistent with medical evidence and other difficulties".

On adding up my points, he has scored me for enhanced on both daily living and mobility.

Now I'm under no illusion that the DWP will just go with that, but the fact this part is over and they've been totally fair with it, makes me feel a little better.

Few weeks to wait now to see whether or not I'll actually be awarded those amounts, but safe to say if I am then it'll make a huge impact on my life.

My biggest issue is that I'm really struggling (I.e. unable to) drive my manual car. I've borrowed an automatic which has a higher seat to make it easier to get out of but this had to be returned today. I just about managed to drive mine the short distance home but the thought of getting in it tomorrow is haunting me. I really don't think I'll be able. Working from home with a perfectly well toddler anyone?!

If I was to get the enhanced mobility I could get my own auto and not be trapped in my house on these days.

Basically this is to say that I've no idea of the outcome yet, but from the looks of things so far it might be okay. And if it does happen, it has been a straightforward process and one I'd recommend.

If nothing else, it's a way of funding all our aids and all the broken crockery!!!

Good luck, @Orchid887 for that final hurdle with the DWP decision maker - but it's looking positive.

Sounds very positive Orchid. Fingers crossed you get it !

I've just started on sulfasalazine. Thank you for helping me decide to go for it.
I'm not having any nausea, but I've no appetite at all. Did anyone else have this? Did it wear off after a while?

Hey, @Nonametonight , how are you getting on with the sulphasalazine ?
I was taking it for a few months, but I think I was getting side effects. Billiousness rather than nausea, dizziness but also dreadful insomnia. Which made me feel awful all of the time.

I called our 'rheumatology nurse helpline' and they suggested pausing for 2 weeks, which is almost up. And I've been feeling better in myself, have put on some lost weight, and have slept! But my joints have been worse.

Not sure what will happen next. I take methotrexate as well but had to reduce the dose back down, as the side effects were too much at higher dosage. I was suggested sulpha or leflolomide (sp?), but i dont want the latter as I have lost half my hair on methotrexate and can't face any more. I hope it's not lefl or nothing 😔

I'm off the sulfasalazine as well.

When I titrated up to three a day, I woke up the next morning feeling like I'd been on a drugs bender the night before. So I decided to have a break for a week.

When I went back to taking it, I started getting this pain and swelling in one side of my face. It didn't look too bad, but it felt awful - like someone had been punching me repeatedly - I actually wondered if someone had managed to elbow me in the face without me realising. I spoke to the rheumatology nurse who insisted to begin with that my arthritis had jumped into my face. But when I asked why my cheekbone was hurting and my skin felt swollen and bruised, she said it could be an allergic reaction.

Waiting to see the rheumatologist again now.

Oh yikes @DestroyEverythingYouTouch . So are you unmedicated now? (That auto-corrected to uneducated! Good thing I noticed...)

You also declined leflunomide, didn't you?
Have you a date for the rheumatologist yet?
At least I already had a nurse appointment in for 2 weeks or so.

Any idea what will be your next step? You've 'failed 2 dmards' I guess, so does that mean you qualify for a biologic?
I think this me not liking one and refusing one, so I wonder what they'll say to that?

Those considering PIP I'd suggest going for it. I read so many horror stories of how difficult and degrading the process was. I had the opposite experience and feel that most people who have a good one don't come online about it!

I sent in my forms, had a telephone appointment with the medical assessor who was lovely. Submitted my OT report etc as evidence.

Got an award text yesterday and I've been given enhanced both. Which will make such a difference to our lives.

I've just thrown caution to the wind and bought myself a fancier stick.

I agree, nothing ventured....I think if you have plenty of evidence from hospital consultants and answer how your condition affects you, not what's diagnosed.

Absolutely that @CherryRipe1
Though my consultant letters didn't really state much at all. It just said that I had inflammatory arthritis and I was on Methotrexate.
I think it was the OT report that gave them what they needed. Along with just being totally honest about how my daily life was.

Can I please join in? I could do with some information and support.

I've had inflammatory arthritis for years but it's been very mild and controlled with steroid injections

Since my husband had brain surgery earlier this year I have had 5 flare ups each time worse than the last.

My new GP (have moved) is useless and refuses to help me so I've had to go privately.

The wait for rheumatology has been 6 months and I'm really struggling. I'm off work at the moment with severely inflamed knees - can't walk or drive and I think it's starting in my right foot too.

I've asked the GP so many times for help - to prescribe something in the mean time but he refuses.

I've been researching and see some people have been prescribed prednisone- is that from a GP or a consultant?

I'm stuck in limbo waiting for my rheum appointment unable to get to work. Does anyone know if there are any options I can ask for in the meantime? I've had my knees drained four times this year and had 4 steroid injections but this time they aren't working

Sorry for the essay but I'm pretty desperate now and came across this thread.

Thanks

@Loafbeginsat60 Unfortunately GPs can't really treat things that aren't responding or are out of their remit and it needs a Rheumatologist to run all the tests but your GP can order some blood tests, just not the in depth ones. I suppose they can't treat things if they don't really know what they are dealing with. What blood tests have you had so far? I have heard of GPs prescribing Prednisone but not sure if that's once the consultant has okayed it. Could you try a private GP maybe & see if they'll prescribe? A blast of steroids might just bring it under control. Another thought, could you ring the rheumatology dept and say you are willing to take a short notice/cancellation appt? Good luck.