Psoriatic arthritis

[redshoes]

I've recently been diagnosed with this and am struggling to accept it. Over 6 months I've gone from a swollen toe and some aching joints to being on Methotrexate (which reduces your immune system) and consequent fortnightly blood tests. I am crying every day. I hate having bloods taken - but I know they have to check my liver function. Does anyone else have this? I'm also developing psoriasis, which doesn't bother me too much at the moment. I feel like jacking the medication but I'm so scared of what could happen to my joints. Just interested in anyone else's experience really...

[redshoes]

Just me?

[TheMysteryCat]

On the general health board there are some fellow sufferers. I don't have arthritis, but have had 90% skin coverage with plaque psoriasis. It's waned a lot recently, but still can't kneel down without a lot of pain.

I can't have any treatment either due to breast feeding.

Vit d, evening primrose oil and hemp cream are currently working in my skin. Not sure if that might help you.

[LineRunner]

Hi redshoes.

I have had psoriasis on and off (including hospital admissions) since I was 13. Not too bad at the moment. (Am 50 now.)

I was diagnosed with psoriatic arthritis in my nearly 20s and have managed it well myself since rejecting a near-disastrous drug prescription.

This is what helps for me:

A good diet of fish, fish oil, vegetables, lots of sleep, avoiding too much stress, avoiding acoholic spirits, and having lots of walking and exercise. I went to the Dead Sea which helped a lot, as does meditation (a guided imagery thing where you picture your sore joint and have a cool fresh healing waterfall wash over it, that kind of thing.) I have no sore joints at the moment at all.

[LineRunner]

Agree that evening primrose oil is helpful, too.

[redshoes]

Mysterycat ouch poor you. My brother has severe psoriasis and has injections of a biologic drug plus uv light treatment at hospital - his skin is pretty clear ATM but he has to have monthly blood tests. Glad yours has waned now. I have heard vit d recommended before, will try some, thanks.

linerunner do you mean you manage without any drugs at all? Wow. That is what I want to aim for. Good to hear diet/exercise is working for you. I am using 'dead sea magik' (sic) products on my scalp and despite my cynicism they are very good, would love to go there. Interesting re meditation - will look in to that.

[LineRunner]

redshoes Yes, at the moment I am only usng moisturisers on my skin like DoubleBase and everything else is 'lifestyle'. I know the meditation sounds a bit lentil-weavy but it works for me.

I also wonder if it all just calmed down naturally as I got older - and I am one of those people whose psoriasis disappeared during pregnancy and never really came back as badly afterwards.

[wonkylegs]

I don't have PA I have RA ( rheumatoid) and am on Methotrexate (mtx)) & anti-tnf. I've had it since I was 19 (mid 30s now). It gets easier as you learn to cope & the meds start to kick in but I remember how hard it was to cope with diagnosis. I actually saw a counsellor for a bit as it helped to talk it through on the emotional side of things as well as the medical. I was originally given a bleak diagnosis & warned I may have to give up my career etc.
I haven't, I've got several degrees whilst having RA, had a successful career, met & married DH, had a baby & a whole load more significant life events.
Monitoring can be a pain but it serves a very useful purpose and the longer you are on the drugs, the less frequent monitoring needs to be - I'm down to 2mths now.
Being on MTX & a biologic means I effectively have no immune system but you learn how to be careful and it's not so bad (and I have a 4 yo who brings home every bug going). Make sure you have a flu jab & pneumonia jab as this helps. Make sure you take your folic acid as this helps & with side effects too.
My drugs have turned my life around and with aggressive initial treatment has limited my long term joint damage, I keep this in mind when I'm fed up of them.
Sorry for the long post just wanted you to see that although it's horrible now, that the future can be more positive.

[wonkylegs]

Sorry forgot to say there is a great support community at arthritis care, so have a look at their website.
If you pay for your meds and haven't already get yourself a pre payment prescription card as it works out much cheaper.

[redshoes]

Thanks wonkylegs I guess I need to speak to a counsellor to try and come to terms with this. Can't carry on weeping and wailing everywhere! Guess I'm still shocked from the diagnosis.
linerunner what happened to your arthritis?

[LineRunner]

I had the PA mostly in my hands (painful and stiff finger joints), and I do exercises and meditation every day and I'm hardly bothered by it at all. I type every day, for example.

I appreciate that this might be unusual, but I just wanted to say that there can be all sorts of outcomes. I've also met people at the Dead Sea who have had great results from the medication that wonkylegs refers to.

[redshoes]

Also wonkylegs good to hear your positive story, thanks. Will have a look at Arthritis Care website

[redshoes]

linerunner that's wonderful. Very brave - did the dr try and persuade you onto medication?
Also, whereabouts did you stay at the Dead Sea? Thanks!

[mankyscotslass]

DH was diagnosed with PsA about 10 years ago, aged 30.

Methotrexate did not agree with him, but he us on Sulfasalazine, Hydroxychloroquine, and Celecoxib.

He is worst affected in his hands and feet, and has had injections into his knuckles befpre now, but has been stable and leading a normal lief for about 5 years.

[LineRunner]

My doctor did suggest methotrexate once, but that was when my skin was very bad. I went to the Dead Sea instead and found it worked so well, I was clear for a year.

I stayed on the Israeli side, at the En Bokek resort. Lots of different priced hotels. (I'm not sure I could afford it now, mind you.) If you do go, look into booking the flights and hotel yourself, as the packages can be a bit of a rip-off. And I have heard that it is better value to go to the Jordanian side of the Dead Sea, btw.

[AgentFelix]

DH has psoriatic arthritis in his ankles, knees and elbows and his mobility declined dramatically as a direct result of stopping taking methotrexate, so please don't make any changes without discussing it with your Rheumatologist - not that I think you'd be as silly as he was.

This lead to him being retired from work at the age of 36.

That was 3 years ago and things are getting better. He's on leflunomide now and he has a humira injection every 2 weeks. The injection is expensive so not everybody gets funding for it, but it's the best thing he's tried.

He's had 2 arthroscopies, 1 on each knee. The first was successful and gave him virtually 100% relief for 2 years, the second didn't work at all.

He doesn't do anything about the psoriasis on his skin. His is very mild, just a bit around his ears and pitted nails so not really necessary.

The lowering of his immunity is an issue at the moment as he has a chest infection and cannot have his humira injection so is in more pain than normal.

If there's anything you want to ask him, let me know.

[redshoes]

Thanks for all your replies. For those on medication, do you feel normal or grotty most if the time? And how often do you have the dreaded blood tests??

[wonkylegs]

Once I found a meds combination that worked for me (took a while) I generally feel fine on them. I used to find I had terrible nausea after taking mtx but somebody suggested taking it at night before going to bed... So you sleep through the worst of it ... and that really worked for me.
I have to self inject for the Anti-tnf which took some getting used to but bar feeling thirsty for a while after & getting a bit of swelling/itch at the injection spot (take anti-histamines and that helps)
My rheumy works on the theory that unless you generally feel better (as a whole not just RA bloods) that sideffects shouldn't put you off taking a meds if it's that bad then there is probably a better combination out there which would work & make u generally feel better not worse on a day to day basis. It just might take a while to find the right combination.
I actually have had bigger problems finding an anti-inflammatory that my tummy can tolerate than finding the scary DMARD

[redshoes]

That's interesting wonkylegs I have stopped taking my anti-inflammatories (Naproxen) as they were giving me terrible stomach pains in the night. I know there is some kind of 'tummy protector' that can be prescribed alongside - am waiting to see my rheumy next week to discuss with him as I don't have much faith in my GP.

[wonkylegs]

I take omeprazole to protect my tummy & Etodolac which is a gentler but less common AI than Naproxin. DH is a dr (not rheumy) and he told me that all long term use of AIs should be accompanied by something like Omeprazole as otherwise you can end up with other problems (ulcers, chronic indigestion, stomach damage) he was really annoyed that I had to push to get it prescribed by GP!

[redshoes]

I'm a bit annoyed too! I was given 3 months of Naproxen without any protection...thanks for the info I will add it to my list for my rheumy next week!

[AgentFelix]

DP (don't know why I typed D'H' above) takes naproxen with omeprazole as well. He always gets a prescription for both.

His blood tests are about every 8 weeks I think.

He's had various symptoms from the different meds. Methotrexate gave him horrific headaches and sickness. His injection is painful sometimes, but any discomfort doesn't last for long. We've noticed that he picks up colds a bit more easily as well, probably due to the lowering of his immunity.

[FergusSingsTheBlues]

I have psoriasis. At its worst, it was 90% and i coukdnt dress easily, bend over, sleep etc. i was fed up with the treatments offered and decided to tackle it myself. I went on a juice fast for two months, mainly carrot, apple and beetroot juices. I lost about three stone (not ideal) but about a month after i ended the fast, it all disappeared. Topically, i found that shea butter was the most effective way to heal my skin. Even now i avoid the nightshades, but have slipped back into bad eating and it is coming back.
There is a great forum on inspire.com, check it out, i found it enormously supportive.

[redshoes]

Ooh thanks Fergus that's inspiring - I'll check it out.
You see Agentfelix I think I could cope with every 8 weeks - that's reassuring, thanks

[wonkylegs]

My blood tests are now 8wks. You start off with them closer together and after a short while if your results are ok they start to space them out usually working up to 8wk gaps. Do you have them at the hospital? If so would community monitoring (usually outside nurse at your GP) be easier? Check if they do this in your area? You usually can do this once you get you've been on the meds for a bit. I found it more convenient to do that for a bit, as it was much quicker (and didn't involve hospital parking fees).