PsA beating me right now!

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Posted Wed 24 Jan 2018 21.21 by PeterK (edited Thu 25 Jan 2018 09.11 by PeterK)

I'm new here. I have been suffering with what turns out to be PsA for about 2 to 3 years. It started in my feet. All my toe joints are pretty destroyed already. Next came my left thumb. That comes and goes. Worse now is knees, hips, shoulders, neck and ribs. It's spreading really quick. Sleeping is difficult because of rib pain. Walking is very restricted. Stairs take a long time! Standing up from sitting is really hard with hip, knee and groin/tendon pains. Not just pain, hard to move. The shoulders are my latest problem severe pain and very difficult getting dressed and showered. Cant lift anything heavy. I've been maxed out on ibuprofen for about 18 months. Nothing else seems to work. Other nsaids and cortisone all tried. Currently on methotrexate for a few months but things still getting worse. The ibuprofen also starting to fail. Really starting to feel quite desperate with it all and feel my life slipping away from me. Quite often when I wake up I get a feeling of dread as I have another day to contend with. I know this all sounds quite depressing. Sorry if I put anyone on a downer!!! Lol Does anybody else have rapid spread like this? Does it get you down? Pete 45 years

Posted Wed 24 Jan 2018 21.34 by PsA@32

Yes Pete, I can relate to everything described. I also suffered for ages before being diagnosed last year. On Methotrexate too but not sure it's working as effectively. I too get a pain in my chest that affects sleeping when turning in bed, along with a stiff neck. And I'm only 33!

Posted Wed 24 Jan 2018 21.59 by PeterK

Thanks for the quick reply. 33 is young to be suffering this. I hope we all can find some solution together. :) I was living a really active life before. Living abroad in the mountains and loving life. Now a full shop around Tescos is about all I can manage. I can't help but think that this is only the start of the badness, but hope not. Has anybody got this thing in full remission? Pete

Posted Sat 27 Jan 2018 21.59 by Crazycat33

Hi Pete, Yes, psoriatic arthritis has bought me to breaking point. Mentally and physically exhausted and I've never felt so alone as I cannot do the normal things that I used to take for granted. 4 years ago I was perfectly healthy. I too have severe joint pain under my ribs, this started 6 months ago. It is completely debilitating. My psoriatic arthritis mainly effects my hands and fingers, knees, feet and toes. Although, I do get hip and back pain. I work 4 days a week and then end up in bed for the other 3. I am currently on Sulphasalazine as I have had some bowl involvement. I took methotrexate for 10 months which made me so ill with no benefit. I am now awaiting to start etanercept which is in my fridge. But I was found to have a latent TB infection which has delayed the starting of this biologic treatment. I have no immune system and I constantly run low grade infections and I pick up everything going illness wise. Over the last 12 months I have been getting almost daily headaches/migraines. When I saw the doctor yesterday she said it's linked to the psoriatic arthritis as it's a multi-system disease. The outcome of that appointment was nothing other than a blood test form! I left feeling upset, frustrated and once again feeling completely alone and helpless. I struggle to get through everyday and dread the next day as I know it will be a day filled with pain. I would just like to take some control back. But I have a glimmer of hope that when I start etanercept it could completely change my life! And, if it does I would like to share this with others who are suffering. It's comforting to know that I'm not completely alone in dealing with PsA.

Posted Thu 15 Feb 2018 08.05 by new to it

relating completely to what you've written here, folks .... looking back now that i am doagnosed ' it seems i had psa for at least 10 years but didn't realize it / suffering really bad in the past 2 years / almost all joints affected! was on methotrexate for a few months and had severe diarrhea with no effect on pain or oin the inflamation levels , so stopped/ am awaiting now a new treatment ( arava, anyone ? otezla, anyone? biologic agents, anyone ?) teh oain somedays is excrutiating/ it is hard to sit down, to get up' to stand, to bend.... psoriasis is of the inverse kind/ thankfully am not getting too many flair ups and when i do i use a natural ointment prepared by a naturopath/ despite this difficult disease , we have to keep in mind life is still beautiful and teh more we succeed to stay calm, teh better our condition!

Posted Sat 17 Feb 2018 10.20 by Chrissie NW

The lady (crazycat) who is on Sulfasalazine how are you on this medication, I was at Hosp yesterday and he wants me to take it I havnt taken tablet, jabs but have had lamp when I look at all what you could suffer with ., I think do I want that, I've had Psoriasis for almost 46yrs. so now they want to try tabs I can't decide I have of course got PsA and it is feet hands knees my trunk is clear. Thks All

Posted Thu 22 Feb 2018 08.07 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Hi, Yes I do, I too have Psirriatic Arthritis, Sorry typo error, and I have OsteoArthritis Too, I have knees hips hands feet, and Spine, all with Arthritis, I am so fed up, Having blisters on my hands and feet is no joke, People just don't want to touch my hands for fear of catching the same.

Posted Thu 22 Feb 2018 16.41 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Years ago when I first got this, My Specialist told me I would have good skin, He never told me in what decade, and he never told me. there is no cure, I am fed up of taking meds that make me sick, Puva which burnt me, and any other treatment from which the side effects are worse, I have given up, and want to know if the T cells are the root of the problem why cant we have replacement Therapy? If you know the anser please get in touch I would be interested to know.

Posted Sat 24 Feb 2018 17.52 by Chezza
5 year's PsA (plaque free), newly diagnosed with fibromyalgia,suspected gout and ankolising spondylitis! Does it ever end?

Sorry you're having it rough. It is hard to take in. But, believe you will and hopefully you will come out fighting! I was diagnosed 5 year's ago after decades of fighting to be heard and not fobbed off! This week I was diagnosed by rhumatologist as having Fibromyalgia. She also suspects Gout and also Ankolising Spondylitis! Oh and I need a knee replacement! I had 11 blood tests and 8 x-rays now waiting for an MRI. One of those blood tests was to see if I has the HLA -B27 gene. Now it's worth doing some research on that one! Right as for medication, I was given Selfracelazine and Naproxen. Was on that for about 18 month's before having heart problems. Was rushed to hospital 3times in a short period of time. Second time I was diagnosed as having Angina. Third time I was keeper in. I do not have heart trouble. It was a drug reaction! I stopped all meds for PsA for 6 months. Then went on to taking Tramadol and Morphine. Two Christmas's ago I fought back to take control. I went cold turkey and then after 6 months started taking CBD OIL. This has helped me. But I ran out a while ago and the shop was having supply problems. Yesterday I began back on the CBD OIL and I too have taken the steps in researching Turmeric and purchased some of the capsules. My heck movement yesterday morning was 5 to 1 today it's more 10 to 3 Amazed to say that least. Unknown I can't beat this but I'd be darned if I'm going to give up and I certainly won't take anything without some research first. But, in saying that I AM going to ask about drug trials. If I have this awful gene then others within my family will suffer. I will do all I can to help them and others. Fight, fight, fight!

Posted Sun 25 Feb 2018 08.11 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Hi Chezza, Everything you have taken Meds wise I too have had naproxen which ended up me bleeding internally, I have applied for drug trials like you am fed up of being fobbed off, I even had one ignorant person saying I had Hard skin, Believe you me I went to town, I am older than her and have lived with this for years she ewas not even born, I take sulphasalazine, and even that is not very good, I take Tramadol, and now I am allergic to Paracetamol, I was told that I would have to be Plaque free, before they will do my knee replacement, because apparently the Plaques from pustular Pscoriasis adheres to metal, causing untold problems for anyone having a knee replacement. which could end up having the leg amputated, Better that than this pain all the time. It took me 6 years before anyone would listen, all my xrays came back normal, despite having a very abnormal knee, then I had an MRI and they found that my knee is being eaten away both sides and under the kneecap, I wanted to slap them for leaving me in this pain for 6 years.. The creams they gave me had no effect, I have now been told that my heart is very tired, I said No bleep sherlock, I have had so many treatments without any good result I am at the end of my tether, I am 64 and will not be around for much longer at this rate, I wanted to try the Soratinax I think but it is too expensive. Back to square 1.

Posted Sun 25 Feb 2018 10.09 by PeterK (edited Sun 25 Feb 2018 10.24 by PeterK)

Thanks for all the replies everybody . . . . part of me thinks its good its not just me going thru this as we might find a solution together . . . . the other part wouldn't want anyone else to go have this!! So i ran the 3 month prescription of Methotrexate . . . . its totally cleared up my skin Psoriasis which was only one elbow patch anyway . . . . . . but my joints/tendons etc have literally got 5 times worse and spread to other parts of the body even more in that same time. I'm stuck upstairs very often as walking/stairs impossible. None of this made easier by not being able to work so financial worries . . . . no hope of government help for me as i lived abroad for 20 years and have only been back 14 months . . . you have to be UK resident for 3 years to get any disability allowance it seems. Having said that, I'm pretty doubtful they'd be interested in helping anyway. So bloody annoys me when I see non-UK's living here getting everything paid for with 8 kids in tow and money sent back for another family where ever else!! Ive never claimed anything in my whole life - a little help right now would mean so much . . . . anyway, thats a different subject I guess. I see my consultant again in 4 weeks . . . . so for now its a case of balancing Ibuprofen so as it can kinda work, it doesnt always so I have to have a few (agonising) days off it to get any benefit - even at maximum (and sometimes beyond) daily dosage. I'm going to push down the root for other tests that i'm not convinced have been covered in regular bloods. Ive spoken to 2 people in person recently who have gone thru this and come out the otherside clear. Both cases it was either systemic fungal infection / bacterial infection causing quick onset arthritis/tendonitis (etc) . . . both cases were diagnosed as PsA originally!!! I think they can extract fluid from a swollen joint (they can take their pick, lol) and test that. Thanks again people, Pete

Posted Sun 25 Feb 2018 10.49 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Hi, Pete, Thanks I was on Methotrexate, and it gave me really bad side effects, I cannot take it, it didn't do diddly for mine, I have taken Acitretin cyclosporin none of which works, I am struggling more now than ever, I cannot take any sort of ibroprufen, Because nsaids make me bleed, I don't know what else there is, but after years of being accused of passing it on to nurses, and physio, I am about ready to give up, I am glad things worked fore you Pete, any psoriasis in any form is Horrid, I would not wish it upon my enemy. Maybe if I asked the surgeon to chop my leg off, I would get some relief.

Posted Sun 25 Feb 2018 10.57 by PeterK (edited Sun 25 Feb 2018 10.58 by PeterK)

Hi Jax . . . . well . . . . nothing has really worked for me . . . I'm the worst I have ever been and am taking 3 to 4 grams of Ibuprofen a day just so I am able to stand and manage the stairs!! (This doesnt always work for me and I have to have maybe 3 days off it to then get any benefit) If I take nothing, then I'd be pretty much stuck in my bed. Even with taking it its hard to function beyond the bedroom/bathroom/lounge! The Ibuprofen is also causing me internal issues, but I dont have any other option right now. I too have thought that'd it would be easier to have bits removed than suffer the pain/swelling!! lol . . . That wouldnt really work with neck and spine though . . . . hahahaha. Pete

Posted Sun 25 Feb 2018 10.58 by Chezza
5 year's PsA (plaque free), newly diagnosed with fibromyalgia,suspected gout and ankolising spondylitis! Does it ever end?

Please try getting off the ibroprofen and try cbd drip oil in onyx strength (I get that from a vape shop locally and take 3 drops twice a day atm). I began back on it Fri and can now walk a lot better. Also started taking Curcumin C3 Complex (2 a day) Holland and Barrett have those. Ask about the hla-b27 gene test when you see someone next.

Posted Sun 25 Feb 2018 11.02 by PeterK (edited Sun 25 Feb 2018 11.36 by PeterK)

Thanks Chezza . . . . I got a CBD sample last week and it didnt really do much, however - I'm very confident that with the correct type it could (hopefully!!). As a side note, a friend gave me 3 drags on a joint last week . . . I hated the stoned feeling - but it was like i could stretch away the the problems with the arthritis . . very strange/amazing really - I wont be going down this route though but was an interesting experiment. (I do get that CBD doesnt have the THC that makes you stoned) Thanks for the info. Pete

Posted Sun 25 Feb 2018 11.54 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Hi, Pete, Chezza, Thank you both, I have to admit that when I went to physio The therapist was saying that my psiriatic arthritis is nothing, And that it was in my head, But after having Osteoarthritis,, and the Psiriatic, I may as well, just let it all do what it will, My knees are being eaten away, my hands and feet are suffering, I wanted to try the Sorantinex cream but at 195 pounds a lot I cannot afford it, So I will stay on the pills and wait to see which part of me goes next.

Posted Sun 25 Feb 2018 12.44 by Chezza
5 year's PsA (plaque free), newly diagnosed with fibromyalgia,suspected gout and ankolising spondylitis! Does it ever end?

Physios are NOT doctor's! You should put in a complaint. How dare one belittle your suffering. I'm horrified and angered by that! Jax I have as you see multiple problems and undiagnosed for decades. It's took me a while to get my head around the problem, then just when coming to terms my mother died. This will be 4 year's next month (on my birthday of all day's to die). Anyway I've done with my grieving now and this year I will celebrate 🎉 I'm celebrating the fight in me, my determination to be able to get on with life. To live each day as it comes (good and bad ones). To offer up my shell to medical science to improve life for others with our condition and all the other one's I have! Don't give up you can do so much in this world to help yourself and your family. Show them how to fight, love and educate them in this illness. You are much more than you believe xx

Posted Sun 25 Feb 2018 16.02 by jax53
Hi, I am 64 have Pustular psoriasis and psoriatic Arthritis.

Hi Chezza, Thank you, I thought I was going insane, Every day as with everyone one here, We all fight a battle of pain, suffering, to try our best and give our families the love they need, and in return, all we ask is a little help from, all our friends, and yes family to continue to support us in our quest to find relief. I like so many of you, have many illnesses, and then there is this psoriasis to boot, I am able to move around a bit, and like so many on here, It is nice to know it is not a rash, We all will win this battle, we have to so we may help all other sufferers to combat this hell we find ourselves in. I would like to Thank Chezza, for giving me back my strength, and Pete, who like us all has many problems, And to all others, let us fight this battle of hell and Win.

Posted Sun 25 Feb 2018 19.41 by Chezza
5 year's PsA (plaque free), newly diagnosed with fibromyalgia,suspected gout and ankolising spondylitis! Does it ever end?

You are more than welcome xx

Posted Thu 8 Mar 2018 10.59 by Elizabeth (edited Thu 8 Mar 2018 11.00 by Elizabeth)

I've been on methotrexate, tablets and injections then liflunomide tablets. The methotrexate made me so ill I was in bed 3 out of 7 days a week so I took the liflunomide which doesn't give me side affects but doesn't work as now I have inflamed tendons in my arm which is agony. I take all sorts of painkillers which don't seem to help at all except zomorph but that makes me so sleepy. My kids don't realise how debilitating PSA is and I get so down and fed up trying to keep up with everything when all I want to do is sleep. My life has totally changed and I feel so alone with this awful disease.
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