To think my body is starting to give up?

[LoopyLou1981]

I’ve got scans and consultant appointments tomorrow so I’m now laying in bed overthinking.
Over the last couple of months a small patch of psoriasis and a swollen knuckle has turned into a scalp covered in weeping, itchy psoriasis, swollen joints in both hands, a swollen ankle that’s painful to walk on and psoriasis at the top of my bum (sorry 😕).
It feels like body is trying to destroy itself. I know I’m being over dramatic and people deal with far worse things but my mental health is really taking a hit.
On my first appointment they gave me anti-inflammatories but they knocked me out to the point where one of my kids curled up in bed with me without me noticing and it scared me (I usually hear them if they do much as turn over in their own beds).
Just realised that it’s not really an AIBU. But I’m terrified of what they’re going to find/say tomorrow and could do with someone telling me I’m worrying over nothing 🤷‍♀️

Steroid pulses don't tend to have the same effect upon weight and appetite as oral ones do, OP.

PsA has subtle differences in presentation and often response to treatments - for example, there's a higher incidence of plantar fasciitis, finger and toe swelling, spinal and tendon involvement is far, far more common, but steroids and biologics have a noticeably better response in a lot of PsA patients. In addition, you also have the obvious psoriasis symptoms too.

A steroid injection can start taking effect within about an hour and really kick in by the next morning. It's worth it, because that feeling like you've been hit by a bus, put through a washing cycle with lumps of concrete and then trampled by a herd of angry wildebeest whilst bees are stinging your head needs to stop. Even if it made me fatter (it didn't because I could actually move for a change) the relief is startling, as you can realise just how terrible you felt.

I'd also suggest T-gel for your scalp and psoriderm for your baths. And a cold pack on your head really helps reduce the burning sensation - been there, looked motheaten, my hair grew back once treated for PsA rather than RA.

Of course you worry about your appearance. But you have to get yourself feeling physically good.

I've had psoriasis covering around 75% of my body for over 50 years, and RA, OA, and PsA for about the last 10 of them. Its a condition that has a massive effect on mental health and self esteem and that shouldn't be underestimated. The treatments can be painful, messy, time consuming and soul destroying. You are not being dramatic or worrying over nothing, you are understandably concerned about the future for your health.

That said, whilst there are no permanent cures treatments now are much more effective than they once were and health professionals are much more likely to recognise the mental health issues alongside the physical ones.

Don't be afraid of using steroids or other strong medication. The effects of them are unlikely to be as severe as the stress having these autoimmune diseases untreated. I currently take methotrexate which has been life changing in the main, although even this doesn't stop a 'flare' in it's tracks.

Good luck with your appointment today. Hopefully, once you have talked through your options you will feel more positive and calmer about the help that is available.

Well that’s my diagnosis sorted. Just a steroid injection in my bum (lovely achy bum cheek now 🤦‍♀️) and a week long course steroid tablets then back in 2 weeks to see what happens.
Thank you for the positive thoughts and stories. Just hoping something works now!x

You poor sod, it does sound a lot like an inflammatory type of arthritis - either psoriatic or rheumatoid as others have already said. I've got RA myself and also get psoriasis so I can imagine you feel bloody rotten right now. Those steroid buttock shots are good though, don't they feel strange though!

Do press for a proper diagnosis though, as women, we are often dismissed when it comes to our health - everything seems to be hormones or fatigue. Please feel welcome to pm me if you need to chat about things, I'm not that vicious really!

Sending more positive thoughts your way

I wish GPs knew more about this. I recently found out that the inflammatory marker they look for to diagnose RA isn't present with PsA. My GP cocked up on this and gave me a false positive verdict, while my condition worsened.

I have it fairly well managed though through diet and mindfulness stuff. But I need to go back and get a proper diagnosis.

OP, I hope your injection starts working soon.

When I saw my rheumatologist they weren't sure which I have out of RA and PsA but he said the treatment is fairly similar NHS wise. I have now been diagnosed with RA based on my flares and X Rays. I have never put on weight with the steroid injections, but they will only give two a year here for some reason. I don't know if it is the same for PsA but I found diet has helped with me, especially cutting out dairy so now you have a diagnosis, hopefully you can move forward and find ways to improve things for you too

He did say that, if the steroids don’t work, there is an immunosuppressant drug to try and he’s trying everything else first as it’s aggressive and comes with the added bonus of a blood test every couple of weeks.
I’ll have a look into the diet side of things. I suspect that it might suggest limiting or giving a lot of the tasty bits which is very disappointing! That said, even I might give up cheese (I bloody love cheese!) if it meant less pain!x

It's the Type-2 (low carb, Mediterranean) diet that works for me, so cheese is in there!

I hope you feel a bit better and more in control now you know what you're dealing with.

Yeah the steroid injection are brilliant for making you feel great, did they tell you to still take it easy as the steroid will wear off quicker if you then think because you are not in pain you go a bit mad doing everything. I did that and mine wore off quicker

Yeah the meds are a bit harsh and need regular bloods to check your liver function and white blood cells and more.

Hope the pain eases soon and you can start getting on with life again and start to get it to a manageable point 💐💐💐

Wishing you good luck OP. As advised, take it easy, change your diet, fingers crossed for quick improvement.

Pop over to the ‘autoimmune’ section within the Health part of MN if needed

He did say that, if the steroids don’t work, there is an immunosuppressant drug to try and he’s trying everything else first as it’s aggressive and comes with the added bonus of a blood test every couple of weeks.

That's probably methotrexate or a similar drug. The side effects sound scary (and the blood tests are a pita) but it works and, for me, the side effects have been minimal.

I’ll have a look into the diet side of things. I suspect that it might suggest limiting or giving a lot of the tasty bits which is very disappointing! That said, even I might give up cheese (I bloody love cheese!) if it meant less pain!x

I was told to stop eating dairy when I was 6 and haven't had any since then and I still had chronic psoriasis all my life. Just remember when these things are being suggested that they don't work in the same way for everyone.

Good luck. I'm glad you are feeling calmer and I hope they find the right course of treatment for you soon.

2 days in and the pains in my ankles are nearly gone! Still have sore hands and the psoriasis is worse than ever but I’ve been able to walk around for the first time in ages. This has resulted in me tidying the house like a mad person! DH is very pleased with the results 😂

Pacing. Pacing is vital so you don't overdo it at the first sign of relief.

Glad it's helping, though!

Oops...spoke to soon. No crazy tidying for me today 🙄 x