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Original poster

A thread for those with psoriatic arthritis?

133 replies

florenceandthemac · 04/01/2024 11:26

Just wondering if anyone would be interested in a thread for PsA?
I'm newly diagnosed, not on any treatment yet as I was diagnosed privately and am waiting to see my NHS rheum in the next two weeks. My symptoms are only mild so far (I have very severe nail psoriasis though).
I'm in a PsA group on Facebook, and tbh, it's scary..! I feel like everybody who posts or comments is so severe, in wheelchairs/using walking aids, that I'm starting to feel doomed.

Just looking to be able to chat about symptoms/upcoming potential treatment, and also wondering if everybody suffers so badly?

OP posts:
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Seaitoverthere · 20/07/2024 04:05

Oneblindmouse · 19/07/2024 19:40

Sorry this is long as I have had Psa and psoriasis since I was 16 and am now 64.
I had a brain haemorrhage at the age of 15 which triggered psoriasis. This was 1975 and the only treatment then was coal tar ointment. It was horrible. Smelly and stained everything it came into contact with. The only other cream was Betnovate, a mild topical steroid cream which could only be used very sparingly on my facial psoriasis every three days.
At the age of 22 Psoriatic Arthritis started in my right shoulder and ankle. Surprisingly both the psoriasis and Psa disappeared when I was pregnant at 27. It returned with a vengeance after DD was born. It spread to other joints and I was given ultra violet treatment on my shoulders in 1984 and radiotherapy on my ankles in 1988, aged 28. Neither worked. Only anti-inflammatory tablets worked. Life was a big struggle. However my psoriasis did not return as bad as before after the pregnancy.
When I was 36 my DS was born. Again the psoriasis and Psa vanished when I was pregnant. After the birth I was hospitalised with what seemed to be a DVT in my left leg.
However it turned out to be the onset of really bad arthritis in my knee. This led to lots of scans and the prescription of Sulphasalazine and Methotrexate. I still take both now, 28 years later. It works reasonably well

I also had to stop taking the anti inflammatories as they were making my stomach bleed. I don't recall what I was given instead. However my knee got worse and worse and I was told I would need a replacement after I was 60.

About 3 years after the knee problem started I had a synovectomy and arthroscopy to reduce the thickness of the joint lining, as it was ballooning up with synovial fluid. I was told that the surgery would probably need repeating after around five years as the lining would regrow.
About 6 years later I was having to have the knee aspirated every 6 months as it filled with fluid and I couldn't bend it. My rheumatologist injected steroids after the aspiration which helped for a few weeks. I was on continuous co codamol by this time as nothing else touched the pain in my knee. Fortunately the Methotrexate and sulphasalazine was effective on the rest of my joints.
In 2020, at 60, I was told I needed the knee replacement. Due to Covid that didn't happen until May 2022.
Two years on from fhe knee replacement my knee is fine. The rest of my joint pain is fairly well controlled by the Methotrexate and Sulphasalazine. I take paracetamol and the occasional co-codamol when I have a flare up.
Although my pain and inflammation is mostly under control my joints are knackered so I limp and need an orthopaedic insole in my right shoe to correct my gait.

That’s rough . Glad you are generally pain free now. I had a hip replacement a week ago due to hip dysplasia but it deteriorated really quickly after my PsA became active a couple of years ago. Somehow my bad leg has become longer and seems to be post surgery . Apparently it may settle down in a few months but if not I will need an orthotics referral.

AliMonkey · 20/07/2024 08:31

@Whatagoodidea45

Everyone is different but yes it is very possible that if your DH’s PA has been found early enough and treatment is started soon that it won’t have a massive effect on his life. My PA is rarely so bad that it stops me doing anything, it just might hurt a bit or take me a bit longer. But since having it I have definitely lived “a normal life” - husband, two kids, walks, bike rides, housework, gardening, professional
job, voluntary work, holidays. Realistically it would probably stop me if I wanted to run a marathon or climb Everest but never been on my bucket list! Yet in the year between symptoms starting and getting treatment going, I really wondered if my life as I knew it would be over. Hope your DH finds the right treatment quickly.

OchonAgusOchonOh · 20/07/2024 09:14

@Seaitoverthere It might be worth seeing a chiropractor for the leg. One of mine has gone off kilter a couple of times and he has realigned me.

Seaitoverthere · 20/07/2024 12:08

Thanks @OchonAgusOchonOh . I was thinking that but will need to wait for a bit for everything to heal.

OchonAgusOchonOh · 23/07/2024 14:59

Got a cancellation with the rheumotologist today. She confirmed that it's psoriatic arthritis.

I'm starting steroids tomorrow to deal with the inflammation as there is too much for injections (3 toes with dactylitis, several foot joints and the ankle). Once I get the TB screening and the training I'll be starting Humira. I'm a bit nervous about the injecting but I'm sure I'll get used to it.

Seaitoverthere · 23/07/2024 15:55

Very good to hear you have been seen. Sorry you have the diagnosis but I think there comes a point when it is a relief, don’t know if you can relate to that..

Also very impressive you will be going onto Humira rather than having to fail two of the older drugs too. Sound like you have a good one there.

OchonAgusOchonOh · 23/07/2024 16:01

Thank you @Seaitoverthere .

Yes, I can definitely relate to the relief. I just want my foot back at this stage. And hopefully get rid of the fatigue.

Seaitoverthere · 23/07/2024 16:14

I can relate to you wanting your foot back! Mine is actually behaving reasonably well. I don’t think it is the Sulphasalazine though, more being on painkillers more regularly. Hopefully the steroids will kick in quickly for you .

The fatigue is shit isn’t it 😢 I have a fairly new friend I’ve made since moving who quite by chance also has PsA diagnosed about the same time as mine was so we are both fairly new onto DMARDs. She looked at me the other day and said ‘it’s the fatigue that’s the killer “ I didn’t disagree.

There are some podcasts on birdbath.org.uk on PsA you may find helpful. If it helps to know the fittest person I know has it, she goes off for 100k walks.

OchonAgusOchonOh · 23/07/2024 16:28

Glad your foot is behaving.

I'm hoping the Humira will help with the fatigue. Do you think it is likely to?

I'll definitely check out the podcasts but I have no desire to take up 100k walks😀

OchonAgusOchonOh · 24/07/2024 17:20

Can I ask some more questions please?

I had a back MRI yesterday and it looks like I have axial involvement as there is inflammation on one of the sacroiliac joints. I also have dactylitis in three toes. From what I've been reading, both of these are suggestive of a more severe version of the disease. Does that matter once the drugs are working? I'm just wondering is this is likely to make it harder to control than if I had a milder version.

The Humira also works on the axial element so that will hopefully do the trick.

Original poster
florenceandthemac · 26/07/2024 16:37

We've just got back. Enjoyed it as a base to stay.
When do you go?

OP posts:
Original poster
florenceandthemac · 26/07/2024 16:37

Ooos wrong post

OP posts:
NormalAuntFanny · 26/07/2024 17:45

I think @OchonAgusOchonOh that for more severe symptoms you take humira and methotrexate but I'm no doctor! Hopefully you'll be monitored fairly closely to start with to see what works.

I changed from meth to humira nearly six weeks ago and it's not working yet sadly, am more achey than for more than a year and have bad skin too. Had actually pretty much forgotten the pain.

At least don't have any meth side effects anymore and no new ones apart from headaches. Injection is very easy and doesn't hurt on the plus side.

Good luck

OchonAgusOchonOh · 26/07/2024 18:01

Thanks @NormalAuntFanny . I hope the humira kicks in for you soon. I've had my bloods taken for the TB test so once that comes back I'll get started. I'm not looking forward to self injecting but I'm sure I'll be fine.

I'm currently on steroids to deal with my foot inflamation but no improvement yet. I'm only 3 days in though.

OchonAgusOchonOh · 10/08/2024 21:47

I had my first dose of Humira yesterday. The nurse came out to the house to do train me. Definitely the anticipation was worse than the reality. I didn't feel it at all.

Now just waiting for it to kick in.

NormalAuntFanny · 11/08/2024 13:02

Just done my fourth @OchonAgusOchonOh managed to get some blood this time but no real ouch.

Still not as effective (yet) as methotrexate for the pain but a million times better in terms of side effects.

Hope you feel some positive effects soon.

HoppityBun · 16/08/2024 02:49

Is anyone here on Tofacitinib?

mrstambourinewoman · 16/08/2024 20:30

@HoppityBun I'm starting it on Monday. It'll be my 5th or 6th biologic ... am losing count. Have you started ?

AnArundelTomb · 19/08/2024 17:08

Hi, I was diagnosed with PA 15 years ago but had it over 20. I'm on no meds as methotrexate made me ill and I'm allergic to sulphasalazine. Should my rheumy be offering a biologic? They did 15 years ago but I declined as I didn't know if I wanted more children and was told you can't take it in pregnancy. So I'm on nothing and in a flare right now, along with sacroilitis, neck and shoulder pain my hands have started hurting and becoming gradually more swollen, does anyone thing this looks in the realms of dactilyitis?

A thread for those with psoriatic arthritis?
Seaitoverthere · 19/08/2024 18:57

I believe that if you have 3 tender, swollen joints and have failed 2 DMARDs as you have the NICE guidelines are to try a biologic.

OchonAgusOchonOh · 19/08/2024 19:16

The current advice from the American Rheumatology Assoc is to go straight on to biologics for PA. That's what my rheumatologist went with. I'm in Ireland though so it may be different wherever you are.

@AnArundelTomb There are others on here much more expert but if they are more swollen than the ones on the other hand, it may well be. I thought I only had dactilytis in one toe but the rheumatologist told me I had it in 3. She pointed out the difference in size between the equivalent toes on my other foot and it was pretty obvious then.

OchonAgusOchonOh · 28/09/2024 00:00

Quick question - The rheumatologist told me I should get flu and covid vaccines once available. The pharmacy has clinics next week so I plan on getting them soon.

The Humira nurse said I should get them in the middle of two injections, which I will do. I'm trying to decide whether to get both at once or one next week and the other two weeks later. What would those of you who are experienced with biologics recommend? The pharmacist just said I'm fine to get both together but I know they prefer to do it that way. If I get them separately, which should I get first? I'm reckoning covid as there seems to be a lot of that around and I haven't heard of anyone with flu yet. If it matters, I've never had a flu vaccine before but I don't tend to overreact to vaccines. At least I didn't before I was on immunosuppressants...

NeverDropYourMooncup · 28/09/2024 12:00

Both at the same time. That way, if you feel a little rough or sore afterwards, it's just a couple of days in all.

AutumnCrow · 28/09/2024 12:34

I booked both of mine together on 17/10 but then I got covid which has buggered up my injection schedule (for Adalimumab, a humira biosimilar). I’ve only just started injecting again, last night, after a 12 day postponement.

<sigh>

OchonAgusOchonOh · 28/09/2024 13:28

AutumnCrow · 28/09/2024 12:34

I booked both of mine together on 17/10 but then I got covid which has buggered up my injection schedule (for Adalimumab, a humira biosimilar). I’ve only just started injecting again, last night, after a 12 day postponement.

<sigh>

Sorry to hear that. I hope the delay doesn't impact on its efficacy.