Psoriasis and suspected Rheumatoid or Psoriatic Arthritis

[LoopyLou1981]

I’ve had scalp psoriasis for the last couple of months. Dr has given me a steroid ointment but this doesn’t seem to be touching it.

I’ve got another doctors appointment on Tuesday to find out whether I have rheumatoid arthritis. If that is negative I suspect that they might suggest psoriatic arthritis due to swollen joints in my hands and sore joints almost everywhere else.

I appreciate that there might be medication etc that will help with the discomfort but I’m wondering whether anyone else is going through this whilst looking after two small children. They want to be carried, play games, run around with me and I don’t want to be a boring mum but it’s causing me so much pain.

I’m hoping for some tips. x

I’ve had similar - diagnosed with PsA after having my second child (with psoriasis on my scalp). I’m sure your doctor will talk you through the therapy options, but to assure you from feeling like I would NEVER be able to play with the kids without discomfort or pain, I am currently pain free.

My tips would be - don’t put up with it...tell your rheumatologist of all your aches and pains. I spent a long time “putting a brave face on it” when I should have been more honest (with myself as well as doctor) about how bad it was. I am now on effective medication and, honestly, other than taking my drugs don’t have to ever think about the condition as I just don’t feel the aches or pain I used to. Also, appreciate that you have a chronic condition that affects your whole body - and sometimes you just need to take it easy. If you’re tired, you’re tired, and you need to try and rest (to whatever extend is possible!)

Thank you for your message. It gives me some hope because, at the moment, all I can see is the pain getting worse and me not being able to be a fun mum.
It’s good to know that there are drugs that can help x

When I was being diagnosed (maybe 2 years ago) it just felt so overwhelming, like it was all I would ever be able to think about and that it would affect every day for the rest of my life. But honestly, I don’t think about it much now. Be warned you might have a lot of medical admin to start (eg, regular blood tests to monitor impact treatment) - I hope your appt goes well.

I have psoriatic arthritis that has caused a lot of joint damage.
I was diagnosed age 27 ( I'm 44 now)
Firstly I was put on a steroid and oral chemo combination and it made me gain 5 stone and feel really unwell.
Then they tried 4 other drugs and steroid injections regularly, draining my knee, elbow etc
Gave me liver failure and one of my kidneys was damaged.
I existed on morphine and Valium for a couple of years.
My immune system is ruined though from years of taking different immune suppression drugs .
I also have lupus antibodies and a blood disorder, so had a few very extensive DVTs too.
Finally I had to get approval from the local health authority to try an anti tnf injection called humira which was hideously expensive but as I was in such a state I was approved on the second attempt.
I take it every 2 weeks.
Honestly it took a few months but the majority of my aches and pains went away.
As did all of the psoriasis, which was head to toe and very bad.
Now I still get pain in my damaged joints but no swelling or that horrible stiffness on waking that lasts for ages.
Humira improved my life so much.
The good news is now , 5 years on is it is much easier to get because it's license is up and generic versions are available and it doesn't cost thousands a month any more.
Also , newer better drugs are available now but you would have had to try everything like I did to get a chance of trying them.
It's a horrible disease but once they find a med that works for you , you'll be on the road to a happier less painful life.
I also had a bleed in my brain stem a few months ago .
It's not connected but I'd forgotten what it felt like to feel so tired and ill.
Makes me really appreciate my humira more.

Thank you for all of the replies.
Another question...how do you deal with the mental side of having psoriasis? I’m finding that it’s really affecting my confidence and affecting my mental health. I’m feeling really down about it.
Also, do the drugs for the arthritis also help with the psoriasis or are they separate?x

The arthritis meds treated my psoriasis - a dermatologist I saw at diagnosis said it would “melt away”. He was right! He gave me some cream too but I’ve never had to use it. Basically because the arthritis meds treat the underlying inflammation causing the joint issues, they also treat the inflammation causing the skin issues.

Oh, I should add my psoriasis is relatively mild; I’m not sure if add on treatment is needed if the skin problems are more severe.

My very severe psoriasis ( head to toe) went away within weeks of starting the first meds they put me on and I've not had any for years.

Can you still have psoriatic arthritis without having any active psoriasis? I was diagnosed around the age of 9 (now 48). Not great during my teens, but has vastly improved over the years. The last episode was 1 patch about 10 years ago. I do get dry itchy skin at times, particularly this time of year with the cold weather.

I have sore joints-knees, hips and pain in feet sometimes. But I was wondering if it could all be related.

@rugbychick1 yes, it can occur without active psoriasis

@LoopyLou1981 how did the appointment go?

Hi, I’ve been referred to the rheumatology department for more testing as my serum urate level has come back as high.
Apparently this suggests rheumatoid arthritis but there could be other causes.
I’ve got an appointment on 2nd Jan so I’ve got a month with no pain management. Can’t say I’m looking forward to that one!x

Oh, that’s frustrating that you need to wait. You could see if your GP could prescribe some pain medication in the meantime (eg naproxen or steroid injection)?

@loopylou1981 make a nuisance of yourself and get your gp to prescribe something for the pain. Higher strength cocodomol at least if not naproxen as well.

I started with joint pain just about 12 years ago. Thought I'd strained my elbow that developed into multiple joints and stiffness. I didn't develop psoriasis for a year or so later and that's still really really mild.

I didn't have children when I developed this so I held off treatment until after my twins were born. Had a relapse about 6 months after and started methotrexate... it has been a wonderful drug for me. I still have a bit of joint pain occasionally but it's so much better. I'm completely mobile and no stiffness at all. Rarely have to chug painkillers like I used to.

Don't be despondent. Help and treatment is out there. You just need to access it.

I’ve woken up this morning with my hand in agony. It’s as if my brain has heard the probable diagnosis and decided ‘we don’t have to pretend it doesn’t hurt anymore let’s go for it’ 🤦‍♀️

Regarding OP question about the mental side. I find it’s more the side effects of the treatment that gets me down more than the PsA itself. Was on sulfasalzine for a long time and the side effects were depressing. On MTX now and the side effects are much better. I also find exercise really helps me to deal with the mental side of living with PsA. Best thing though is to raise it all with your Rheumatology team. If you have a good team they will try different things. Biggest problem I have faced is hospital politics. My consultant wanted to refer me to dermatology for the psoriasis affecting my skin but dermatology refused to accept referrals from other hospital departments. (He had referred me directly to other departments before e.g. respiratory) dermatology would only take referrals from GP. So he had to write to my GP, who then wanted me to have an appointment with them before referring me.

Hey @LoopyLou1981 just wondered how your appt went? I hope you’ve made progress on diagnosis and management.

Hi, the consultant is working on the basis that it is psoriatic arthritis. I’ve had my first steroid injection and a course of 5 days of tablet steroids but they finished last Tuesday and definitely haven’t worked. If anything, I’ve now got additional painful joints so it seems to be spreading 🙁
I’m back to see him on Thursday so I’m hoping he has another treatment in mind to try x

Oh no - sorry the steroids didn’t help :( good that you’re seeing him soon though, fingers crossed something else will do the trick. Be warned though some other options (eg methotrexate) can take a while to kick in

Well I’ve now got a list of fun things to look forward to -
Dermatologist appt about my scalp
Steroid injections into my inflamed joints
Full bone scan

This will then be followed up with starting on methotrexate.

Rhea given me some strong anti inflammatories to get me through the next week. They make me light headed and a bit queasy but they seem to do the job.

Does anyone have any advise on stopped my hair falling out? I’ve got a few really thin patches and it’s really getting me down 🙁

*stopping 🙄

:( I remember feeling there was LOTS to do when I was first assessed and diagnosed; way too much disease admin for my liking which seemed to consume my thoughts! If it’s any comfort it calmed down once I was diagnosed and on treatment (reared you again when I changed medication, but back to minimal effort now!)