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Psoriatic Arthritis - any fellow sufferers?

(26 Posts)
gruffalo13 Thu 28-Jul-16 22:58:27

I've had joint pain on and off for a while now, and in January this year I had some toes swell up massively.
Then ankle, and other toes, elbow and wrists.
Diagnosed with suspected Psoriatic Arthritis about 2 months ago. No psoriasis (yet) and I'm negative for RF but dr still could be RA... it doesn't matter so much at this stage, but he said it matters "a bit" ongoing and that we will have to see how it unfolds. I do have some small nail damage on toes.

At present I've been on methotrexate which hasn't helped (ESR and CRP still going up) and just started Arava in addition.
I also take Naprosan when it's too bad and Panadol daily.

It's been a huge shock going from someone active, doing yoga, running around after 4 kids and I'm only 49, to not bring able to walk for a couple of hours, then limping around all day. My other foot has now joined in so I'm hobbling in synch at least!

My DH is amazing and does everything he can but he still has to work and I find myself at home looking at all the housework trying to find some energy to keep up with it all. I also work part time outside the house.

I go to bed at 7.00 and we can't go out at night - if we do have to its bed all day or rest at least as my feet are so swollen.

I'm really tired of being in so much pain and waiting for something to help - I know the drugs are longer term to work but geez it seems like forever!
Dr told me only 30% of PsA patients respond to methotrexate but they have to try first - public health and cost.

I can't see a future with a normal life at the moment. I'm scared it will always be like this 😞

I've just started Aqua classes and it helps keep my spirits up and I try to be positive ie I'm still alive, and it's not life threatening.
But I feel bitter. And resentful of others who are enjoying normal life. And also quite alone, as not many friends know (I've necessarily withdrawn a little)

Sorry, this has been long!

Newkidontheblock22 Fri 29-Jul-16 10:26:47

I was diagnosed about 4 months ago but like you was told it could still be RA. I got put on sulfasazine and had some side effects but initially tolerated well.
However I have had lota of problems with my platelets and neutrafils and have to keep stopping medication. Its very frustrating so my joints are no better than they were 4 months ago.
I am taking high dose vitamin d and cod liver oil in the hope it will help keep my joints in better condition. I'm afaraid I can't offer advice on it improving but I can sympathise with the exhaustion as I can't hold down a full time job. I have had to stop anything resembling exercise apart from occaisional walking on advice from the physio.
I'm hoping once I find the right dmard to be able to do gentle yoga and swimming to help keep the joints mobile.
None of this is probably that helpful to you but I wanted to post and say I'm in the same boat. Its tough!

Fuckoffdailymailnobs Fri 29-Jul-16 10:35:21

Hello cakebrew

When is your next appointment? Do you know you can see occupational therapy and physio? Have you read the nice guidance and checked you are getting "optimal care"?

Methotrexate can work for some people but it categorically does not work on spinal disease (they call it axial).

It sounds like they are hitting yours aggressively and that's good. You need to keep saying ok this isn't working what do we try next. Ideally in my opinion you need to get to a biologic as soon as possible firr best hopes of a sustained remission.

Fuckoffdailymailnobs Fri 29-Jul-16 10:37:26

But yes bitter resentful etc we all go through that and back to it and through it.it is I think a sort of grief process. I'm six years in to "active" psa but honestly past issues make a terrible sense now as well so it may have been lurking for a long time.

Fuckoffdailymailnobs Fri 29-Jul-16 10:42:01

I started on sulfasalazine, added methotrexate, tried various anti inflammatory, then had humira (biologic) for two years now on injectable methotrexate, sulfasalazine, celebrex, amitriptyline and waiting (not very patiently) for stelara to kick in. I'm not good at the moment but hopeful for improvement. I think you have to keep doing gentle exercise in a use it or lose it type of scenario. I swim, do Pilates and walk as much as I can when I can. But I have spinal involvement which is horrid.

lostinlego Fri 29-Jul-16 10:46:44

My partner has it and went through trying all the different drugs like methotrexate and sulphalazine, none of which were particularly affective. Eventually he was put on humira which he injects once a fortnight, the change was incredible he no longer has to take any pain medication and he has far fewer flare ups. I think he has been on it for 5 years now. He has been told it may not work forever but so far so good. (He too had the arthritis symptoms before the psoriasis which made diagnosis tricky)

Fuckoffdailymailnobs Fri 29-Jul-16 10:47:21

Gruffalo the naproxen will work better if you take it every day and you should be allowed some stronger painkillers codeine etc for bad days.

Fuckoffdailymailnobs Fri 29-Jul-16 10:48:09

I only had the tiniest bits of psoriasis that haven't been seen since I started methotrexate.

Fuckoffdailymailnobs Fri 29-Jul-16 10:56:39

Sorry I'm bombarding you but prescription pre payment card is essential. I've got twelve items on my repeat script!!

gruffalo13 Fri 29-Jul-16 12:52:15

Oh thanks everyone for the responses!

newkid I haven't had too many issues with the blood tests yet apart from low lymphocytes a few times. My liver seems to be coping ok too. I had cholestasis in pregnancy so my fear was my liver was going to be susceptible but so far so good.
I do hope you can get a treatment that works for you - it just takes up so much time and energy getting through a normal day.

fuckoffdaily I'm not in the UK so we don't have the same entitlements however I'm seeing a private rheumatologist and subsidised medication. I think I'll be put on a biologic next - I don't hold out much hope for the meth/lef combo as it seems ineffective in PsA for a lot of people. Dr talks about another DMard called Otezla but it's not on the PBS list for PsA yet.
Yeah I don't have spinal issues but I hear it's not good.
Mine is feet wrists and elbows.
Also I hate taking the naproxen every day like I know I should. I am concerned about side effects so I only take when I need to walk a lot. Silly I know. It's 1000 mg slow release so works well. I just want to see what's working with the other drugs and if I'm taking AI then I don't know ... Does that make sense? I've got tramadol but find those type of Drugs don't work for me.

lostinlego sounds like heaven to feel normal smile I hope he stays there forever! Does he have the psoriasis now? The reasons the dr thinks it's PsA for me is, not symmetrical, sausage toes x 3, few nail pits and fungus looking big toe nail, and no positive RF bloods. Although my first bloods were totally normal 2 months ago, now ESR is raised 42 and still climbing and CRP is creeping up and over normal ref range too now

I had a friend bring around flowers and a card and some books for me today. Was lovely. It's nice to have a few RL people to whinge to haha. A select few. I feel most people won't "get it" and might even dismiss it which at this stage would upset me (I feel pretty sensitive and sooky!)

gruffalo13 Fri 29-Jul-16 12:53:53

Oh and I'm also taking Vit D and fish oil. Also tried AIP diet for a month - didn't help.

SluttyButty Fri 29-Jul-16 15:22:12

I have it, have for a long time but mine started to get a lot worse. Am on biologics now. Happy to answer any questions either here or pm smile

lostinlego Fri 29-Jul-16 19:49:24

He occasionally gets psoriasis on his scalp but it's usually not that bad.

gruffalo13 Sat 30-Jul-16 08:59:42

Slutty have you ever taken Arava? If so how long did it take to work - if it did?
I'm only a week in with this new drug but it's just so bad and getting worse, my fingers are sore and my wrists are pathetic.
I can't wear shoes as my feet are so swollen 😥

Icantstopeatinglol Sat 30-Jul-16 09:23:30

Hi gruffalo, totally get how you're feeling. I'm 38 now but was diagnosed at 34 with psa. It's hard to start off with as you're in pain and have to go through the different meds to see what is going to work. I used to be covered in psoriasis but thankfully due to uv treatment and current meds I'm totally clear! I was initially on sulfasalazine but it hit my blood count too much then methotrexate but just made me feel ill and didn't help the pain. However, everyone's different and some people get on really well with mtx so just go by how you're feeling. I'm currently on Humira and it's worked amazingly for the past 2yrs! I feel 'normal' and exercise and work with two little monkeys in tow (5 & 8) so I'm doing well. I do sometimes have off days with the meds lowering our immune systems, I take vitamins to try and help but I seem to get low neutrophils regular which is a slight issue but Drs etc don't seem too bothered. Vitamin D is good to take as I've learnt along the way that people with psa can be vitamin d deficient which affects energy levels.
Main thing is take it easy, look after yourself and please don't think this is it for life as there are loads of different meds to try. We are lucky that arthritis is a well funded area and they're constantly looking for new ways to treat it. Plus they treat psa and ra exactly the same. It's good to know which one as they can cause slightly different problems but treatment is the same.
Try to stay positive as the beginning is the hard part. Also if meds aren't working be blunt and tell the consultants etc. They see so many patients you have to be forthcoming with that sort of info so they can move you onto different meds and find the right one for you.
Sorry for the long msg! God I can go on ha! Good luck flowers

gruffalo13 Sat 30-Jul-16 10:11:20

smile Thanks, it's a good reminder that it won't be forever like this. I get overwhelmed and so tired. I'm 49 but have a 5 and 10 year old, so still so much needed.
I feel so guilty sometimes, my DH is so good, and does everything I can't but it's definitely put a strain on our family. He works full time at a stressful job so I know he would like a break too. During the week I just get on with it but weekends I tend to crash and I take mtx Thursday so sat is always feeling nauseous etc.
Because I'm so fatigued I go to bed really early! I'm also on a really short fuse with the kids and that makes their behaviour worse and more needy.
I've now started declining any unnecessary invitations and extras but to be honest we have a busy life anyway with lots of sport and 2 different schools. And DH in training for an event.
I just want my energy back!!
Thanks for responding 👍

Icantstopeatinglol Sat 30-Jul-16 10:17:36

Op sounds alot like my life. My dh is great but runs his own business which is good at times but he doesn't get a break. He also trains as he does swimming events etc.
I do think that the kids do help as if probably end up wallowing in self pity if they weren't around, they force me to get on with things when it gets tough. One of the reasons I stopped mtx was I was feeling hungover half the week! Which with two kids isn't great, you'll understand that. Give it a bit time but don't just put up with it. Are you taking folic acid too?
I definitely limit my social life, one night out affects me for at least 2/3 days after so don't do it often.

gruffalo13 Sat 30-Jul-16 10:51:32

Yes folic acid the day after mtx.
It's true the kids do help, I would provably be crazy with this by now if left to my own devices.
Just had a chat to DH. He said please don't feel bad. Just rest. I then promise myself to try harder tomorrow but it goes on and on!
I've been at a birthday party all afternoon, with loads of kids, and I'm just over everything.
I took mtx for 8 weeks with no improvement and dr added the arava this week.
I'm pretty desperate for it to work. I think the next step is a biologic and I'm not sure how that works with public health here. Like qualifying. The rules are v strict with length of time trialling other drugs and so on as you all probably know about too.

BeyondBeyondBeyondBeyondBeyond Mon 01-Aug-16 13:55:07

If you are suffering with nausea, you can up the folic acid to up to six times a week, that may help (it's what I have to do)

I was diagnosed with PsA at 25, having had psoriasis since a teen, when it (the arthritis and my psoriasis) massively flared after my second pregnancy.

BingThing Mon 01-Aug-16 23:04:27

You sound just like me 3 years ago. The NICE guidelines state you have to have a certain number of joints affected and have tried at least 2 of the drugs like methotrexate or sulphasalazine before you can have the next level of drugs. But it also depends on funding in your area because the methotrexate is super cheap and the next level are v expensive. I've been on humira for a couple of years and it's changed my life - I'm pain free and side effect free. It's a hard journey and fight to get the drugs but worth it. I had to have mtx by tablet, then by injection with sulphasalazine plus been on steroids and had lots of steroid injections. My advice would be try cocodomol with naproxen to help pain. Make sure your diet avoids citrus fruit, pepper and high salt etc. Take iron and folic acid. Dont take steroids if poss and fight for the anti tnf drugs. Also take 30mg of lansoprazale to avoid stomach ulcer. Sorry for long post just feeling your pain!!!

BingThing Mon 01-Aug-16 23:15:38

Sorry should've said that the reason you need to avoid steroids is because they are not a long term solution but reduce the inflammation and therefore may stop you qualifying for other meds. Plus I got a massive moon face and it makes you even more bloody depressed and angry than you already are!!

nicolasixx Tue 02-Aug-16 08:29:06

Key for me was the first round of steroid injections into the affected joints to get on top of the inflammation before longer term treatment started. They had a fairly quick and significant response. If you haven't had those you should, just for quality of life. Good luck.

sashh Tue 02-Aug-16 12:50:28

Another with PA here - I used methotrexate for about 10 years but never got used to it and decided I wanted a life 7 days a week not 5.

You will begin to be bale to manage it and learn what sets things off.

Fuckoffdailymailnobs Wed 03-Aug-16 11:08:28

Gruffalo, I'm guessing you're in Australia? Do you follow Dr Irwin lim on Twitter /blog? He often sounds very infuriated with lack of injectable methotrexate and the biologic qualifying rules

gruffalo13 Wed 03-Aug-16 13:27:36

Hello - I hadn't seen all these new responses 😀
Yes I am in Australia, and have read Irwin Lim's blog. He seems to talk sense.

I'm frightened of injections into my feet. Sounds hideously painful.

I've got rheumy apt Monday. I don't know what he will say. I've only been on 10 mg arava for 2 weeks with no improvement. Methotrexate 9 weeks.
I think he'll up the arava to 20 mg as I don't seem to be getting bad side effects - only appetite loss and weight loss. Plus very foggy brain.

I got some comfy shoes yesterday. Heaven to walk in. Ugly to look at! I don't care. I just had to have some comfort with my poor feet.

Sassh are you saying you cope with your PsA with diet changes? I tried AIP diet for a month with no change. People keep telling me about turmeric and pepper, and borax.

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