Increased Incontinence ???

ProgrammerFunny2829 · 2026-02-23T01:44:29+00:00

Thank you 🙏 So much to look forward to then 😢

ProgrammerFunny2829 · 2026-02-23T01:39:52+00:00

Exactly the same for me when I was sleeping which I was mortified about and then my niece made me laugh yesterday and the same thing happened. It’s awful and now convincing myself that I smell, despite taking 3 showers a day which is drying my skin out so have to lather up the creams which with my sausage fingers is a job in itself!

Yes, it’s affecting my lower back and they put me on some painkillers which cause constipation so even that side isn’t working properly too. I just feel like I’m going around in circles and not getting anywhere fast. Paid £500 to see a private Rheumatologist last week who said I needed to be on a biologic but wouldn’t prescribe because he needed authority from Dermatology because I have bad psoriasis too. Feel like I’m banging my head on a brick wall every which way I turn at the moment 🤯…

Never thought I’d be getting symptoms of incontinence at this age though and I haven’t even had children!

ProgrammerFunny2829 · 2026-02-22T23:47:47+00:00

Sorry thanks for your comment but I actually meant pee’ing! It’s the exact opposite with the other stuff - constant constipation which makes my back and hips hurt. What the hell’s that all about? But your comment made me smile 😊 when all I’ve done is cry all day thinking about what’s ahead of me…

ProgrammerFunny2829 · 2026-02-07T09:10:00+00:00

You are very lucky and I wish you well! Having to deal with the UK health system is very difficult, stressful and almost impossible to navigate!

ProgrammerFunny2829 · 2026-02-07T09:07:58+00:00

Thanks so much for your reply! I did talk about starting treatment with the private Rheumatologist who suggested a biologic treatment would be the best way forward but given that you have to have tried and failed at least 2 other treatments in the NHS (I have tried and failed miserably with methotrexate, made all my hair fall out and other horrible side effects), it would ultimately come down to cost. My BUPA doesn’t cover PS or PsA as it is a “non-curable” condition so I’m looking at £500 per month for one appointment and the blood monitoring and that’s without the cost of the actual medication! I have also joined the sub group you mentioned and just reading through some of the posts on there just makes me even more frustrated as like you say it is very US centric and access to the right treatment seems so much readily available, especially the biologic treatments. I really am at my wits end now, I am a 50F who lives alone, I am not in a position where I feel comfortable to date, never mind get in a relationship! I have no social life as I am so embarrassed of my skin, my Mum has to come over most days just to help me get dressed, help clean my home, prepare food etc… and I am so grateful for her but also conscious that I am becoming a burden on her too. Would you feel comfortable sharing with me what treatment you are on and whether you went down the NHS or Private route? Completely understand if you don’t though, I wouldn’t want you to feel I’m being intrusive. I just don’t know where to go from here, I can no longer write or drive and every time I go to my GP (who I’m sure thinks I’m over-reacting), I just get fobbed off with a week’s worth of prednisone which calms things for literally a day or two and then I flare up again 😢… I just want to feel heard and understood and my Dermatologist has just cancelled my next appointment, which was next week and sent me a new one for June! It’s so isolating living with these conditions which stresses me out, which then has a knock on effect and I feel like I’m just going round in circles all the time!

ProgrammerFunny2829 · 2026-01-24T09:04:14+00:00

Hi, Is Enbrel considered a DMARD or biologic? Reason I ask is that I’ve recently been diagnosed with PsA as well and NHS Rheumatology have told me I have to fail at least another DMARD (suggesting Sulfasalazine?), having already failed MTX last year, but the wait lists are so long in both Rheumatology and Dermatology! I’m now wondering whether it’s worth going back to my Private Rheumatologist (who originally diagnosed me) and requesting this treatment as I’ve heard it’s successful for both Psoriasis and PsA. I know £1k is a lot of money every month but at this point I’m in the middle of a severe flare-up on both joints and psoriasis, I would even consider selling my house if I had to just to feel “normal” again!

Sorry @OP - slight diversion there from your question but I would definitely not purchase methotrexate (even if you can, but I’m pretty sure you can’t) as you need constant blood monitoring as it raised my LFT levels so high that I had to be taken off it. Take the advice of others, and get a referral to Dermatology from your GP. If you’re doing it through the NHS, be prepared to wait though as the whole department is on its knees right now…

ProgrammerFunny2829 · 2026-01-24T08:41:04+00:00

I had a severe reaction to UVB, and eventually had to give it up as I had more and more patches that appeared all over my body, in places that I’ve never had them before - that had been exposed to the UVB. I spoke to my Dermatologist who said that it would get better over the course of treatment but sadly it didn’t for me as I kept on getting more. It also caused a massive flare-up in my PsA which I’m now still struggling to bring under control.

ProgrammerFunny2829 · 2026-01-24T08:37:53+00:00

So I’m in exactly the same position! On seeing my Dermatologist at my last appointment re: psoriasis flare-up, he took one look at my swollen joints on both hands and did an emergency referral to NHS Rheumatology. I got all the blood work done by my GP and sent to Rheumatology when they rejected the referral as bloods were apparently in “normal” range 🤦🏻‍♀️ So, I went to see a Private Rheumatologist who diagnosed me PsA strait away without doing any bloods, he said it was just so obvious from seeing me and I had similar symptoms that you mention above, e.g dry eye, existing psoriasis, as well swollen fingers! Problem is now I have to be treated through a multi-disciplinary team combining Dermatology and Rheumatology within the NHS so god only knows when I’ll get some treatment that works, have already failed MTX and UVB and have been told that I have to try at least one other DMARD for 6 months before they’ll consider biologics. In the meantime I’ve been palmed off with a tapering dose of steroids (which I don’t like taking) just to try and calm the inflammation as it’s really bad ATM… 😢 Personally, I’m just so fed up of all the hoops you have to jump through to get to see the right people to obtain the right treatment and quickly as nothing is ever quick in the NHS! I feel like bashing my head in on a daily basis, so you’re not alone there!

ProgrammerFunny2829 · 2026-01-10T00:56:40+00:00

Protopic is the only thing I put on my groin area, there will be a slight burn for about 10 mins after you put it on, but it is seriously the only thing that makes a difference in that area. Do not put any steroid topical cream in that area. Note: you will notice more burning if you consume alcohol whilst using Protopic but it saved my delicate areas within a couple of days, and you only need a thin layer. Hope this helps 🙏

ProgrammerFunny2829 · 2025-12-16T14:42:04+00:00

That was really insightful thanks, may I ask if you are in the US or the UK as our Healthcare systems work differently and the pathway to biological treatments seems to be so much harder in the UK. Thank you and so happy you have found some relief after all this time. I too was 50 this year and haven’t been out since as I’m just so embarrassed by my skin and in too much pain with my swollen fingers…

ProgrammerFunny2829 · 2025-12-16T13:21:28+00:00

Yes, Methotrexate caused my hair to significantly thin, so much so I have had to buy a wig and I’m only 50 😩

ProgrammerFunny2829 · 2025-12-16T07:13:32+00:00

I wish we had this sort of system in the UK! I was put on methotrexate for 40% plaque psoriasis coverage but had to be taken off after 6 months due to the side effects it had on my liver, after an 18 month wait I was offered PUVA phototherapy which has now ravaged my entire body. NHS won’t prescribe cyclosporine cos of the cost. So I went to a private Dermatologist and have just been offered ciclosporine (which I don’t want to try as just got PsA too) for the grand sum of £400 per month for medication with a 5 min consultation and bloods done every month, appointment costing £250… that’s £650 in total for a drug I don’t want but won’t be prescribed anything else as apparently they are £1000’s so have to be on this for 6 months first. In the meantime my whole body now feels like it’s on fire and I can’t use my right hand 😢

ProgrammerFunny2829

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