Recently diagnosed with psoriatic arthritis and struggling
3
Posted Mon 22 Aug 2016 16.17 by BobbyD14
I've recently turned 40 and have suffered with psoriasis for 35 years. Last year I ran the London Marathon and suffered some knee pain during training and after the event. I underwent a lot of physio with little success before finally, in July last year I was diagnosed with psoriatic arthritis.
Since then I have had significant pain, on and off, in my feet, ankles, knees, elbows and shoulders all at different times. In the last month it became unbearable however, with such pain in my right knee that I could not walk for a week and had to take time off work. With some NSAIDs and a steroid injection this finally got a lot better after 2-3 weeks, only for my left ankle and foot to become excruciating last weekend - I'm guessing through that leg taking all the weight when my right knee had been bad.
Since seeing a rheumy through Bupa in July last year, who diagnosed me, Bupa have refused to pay for anything further as say it is linked to psoriasis. I am now seeing the same consultant through the NHS but have long waits to see him. Over a year since diagnosis and I am yet to start any treatment and I am finding this frustrating. My dermatologist keeps trying to get me on drug trial such as apremilast and secukinumab, but it keeps falling through at the last minute and I end up on nothing at all.
I tried cyclosporin for the psoriasis over 2 years ago but had horrific side effects - my blood pressure went dangerously high, causing terrifying panic attacks. Since then, and certainly since the diagnosis, I have suffered with anxiety and depression which saw me signed off work for a number of months last year. The dermatologist has suggested that in his experience, methotrexate can cause major mood swings and problems for those who have suffered with mental health problems, so feels it is not suitable - along with very slightly raised liver function shown in a blood test.
However, the rheumy is really pushing methotrexate and I'm a bit scared by it - I've worked hard to get through the depression and anxiety and really don't want to return to it. He has suggested sulfasalizine and leflunamide and asked me to see the dermatoligist again to find out which one would be best for the skin problem too (the psoriasis is quite bad).
So right now, other than using protopic (tacrolimus) ointment on the skin, I have no treatment. In was given naproxen for the joint pain, which does nothing at all. So they gave me cocodamol for the worst days, but that also doesn't help, and tends to put me in a bad mood.
The pain from the joints has been so severe over the past few weeks it has really upset me that this may just be life now. I have a 4 year old little boy and an 11 month old baby boy, with the image in my head of running around with them, playing football and being silly rapidly disappearing. This is starting to ruin my life and looks like making me a rubbish dad as well. I'm struggling with all this and can see know way out, as well as finding it frustrating to get two different NHS departments to speak to each other.
I've never posted on a forum before and have never spoken to anyone with psoriatic arthritis so I'm looking forward to hearing from some like minded people. I could do with some advice and support.
Any advice on exercise would be welcome too. I was a runner, as I have said, but have had to stop that due to the impact. As such I have put on over 3 stone since the marathon last year. I quite like swimming and enjoy the gym, but find it hard to even think about it due to the pain. Should I push myself to help in the long run? I'm not a naturally fit person, I have always had to work hard at it. I have done next to no exercise for the last year.
Thanks in advance
Posted Tue 23 Aug 2016 11.26 by wens1410
I am 43 year old female. Diagnosed as having psoriatic arthritis in August 2016 need help.
Hi I feel you pain. Yesterday I was finally diagnosed with psoriatic arthritis. I'm 43 and I have been so poorly this year . But looking back been ill with one thing and another for about 6 to 7 years. I feel totally defeated. Can't hold job down as always got ill sick and let go before probation ends. Will things get resolved. First dose of methotrexate last night and today vomiting cramping and diarrhea. I should be enjoying life but honestly i can say I'm worried how will I cope financially and get my head together. I want to be fit and active and need to lose a few stone want to exercise but I'm knackered I walk my dogs daily twice a day for an hour a time but I'm done in. Let alone housework and trying to hold down full time job. I help out in Rainbow's and brownies weekly and can honestly say I have nothing left to give. Will the medication side effects get better? When will I see an improvement? Sorry for long post..
1
Posted Mon 29 Aug 2016 20.47 by David Walker
Hi, I have recently been diagnosed with PsA after years of pain, I am hopeful now I can start to improve my quality of life.
I was diagnosed with Psoriatic Arthritis on Friday after years of pain, My rheumy automatically prescribed me steriods, a six week strong course! but the effects have been immediate the inflamation in my hands and feet has gone down and for the first time in a year i dont feel in as much pain. I am taking the steriods alongside Naproxen that my GP prescribed me. Rheumy wants me on Methotrexate in a few weeks. I feel like i have turned a corner now with Diagnose and want to progress I will run with my seven year old until I cannot and I am determined not to stop running with her ever!
Posted Sat 10 Sep 2016 09.39 by Gem
Hi I feel your pain I got my diagnosis in May 2016 and it took me 3 appointments before I got my confirmed diagnosis.. I am currently on methotrexate and having just increased my dose really suffering side effects. My pain/fatigue is horrible and I take naproxen and codiene/paractoamal every day! I am still at work but just and have no work life balance . I have a high pain threshold !
In terms of excercises I am really decontitioned and have lost muscle strength . I work with a physio and also have started swiming even if I only do a few lengths when I go. The gym I belong to has a heated spa pool which I do find helpful as well.
Keep fighting I have to chase up appointments etc and when I see rhem make sure he realise the impact it is having on my life!
Posted Mon 19 Sep 2016 20.35 by PAsufferer
Has any body tried forever aloe products? Honestly these are my must haves for my pa.
Heat gel for joint pain on bad days. Drinking gel for my immune system and joints, scrub for flaky skin, shampoo for flaky scalp, soothing gel to help with soreness from itching and my propolis cream to leave my skin so soft and nourished.
Definitely recommend, and definitely worth a try guys
Posted Mon 19 Sep 2016 23.32 by sasha1970
Hi,
I've had PA since I was 18 years old. There have been good years and bad years. This past year has been a nightmare - inflamed joints, particularly knees, hands, feet and hips. Originally on Naproxen and cocodamol and managed pain through heat and ice therapy which helped to a point. Found a lovely gel (green lipped mussel extract gel) that smells decent and heats up gently to help the pain.
Went back to rheumy and have now been told my PA is now active and there has been deterioration on my joints. They have put me on leflunamide, was going to prescribe methotrexate but because its now active I was told leflunamide would be better.
A few side effects, quicker bowels, weight loss, headaches, nausea and so far Ive only experienced the first two (which has led to losing nearly half a stone in three weeks, good news for me been trying to lose weight for ages) the quicker bowels are a bit of a pain but I'm coping with that - just!
If you suffer from high blood pressure or depression my rheumy said not to try methotrexate but leflunamide doesn't really do anything much to help the psoriasis.
I hope you get some relief soon, its the worse pain and it makes you feel like its never going to end.
Give the green lipped mussel gel a try - you can get it in holland and barrett and on amazon (free delivery) and its called Pernaton Gel also Aloe products are good too.
Good luck
Posted Wed 28 Sep 2016 12.26 by Daryl
PA sufferer can you please tell me what you drink for your immune system as I have been told that my immune system is having effect on my pancreas and heart but have not been offered anything to help with this apart from pills for the heart..Thanks Daryl
Posted Wed 28 Sep 2016 21.18 by Darrenlee1971
Work as a bus driver.
Hello just had my hospital appointment because my face kept on flaring up red with a burning sensation red flaky skin my gp thought it was rosacea but the doctor at the hospital as
diagnosed with psoriasis .
Posted Thu 29 Sep 2016 01.04 by Johnson
Daryl,
The best drink for your immune system is water.
Water at the right molecular level meaning small water can be easily absorbed by our blood cells allowing it to hydrate efficiently.
If you need further help please email for information.
johnsonsamuel1965@gmail.com
1
Posted Wed 26 Oct 2016 09.50 by coll5051
Hi, I also have PA, and have been on MTX for 2 . 5yrs, it has worked for me, with minimal side effects. My Pso has cleared up by 80% and my Arth has reduced greatly too. I know that MTX does not work for everyone, but for me it seems ok for now. ( I take 20mg per week, with Folic also 5mg)
Best of Luck
Posted Tue 8 Nov 2016 19.20 by estill
Hi I have pustular psoriasis and chronic PsA diagnosed 12 years ago i`m 59 I am currently on methotrexate injections 25mg plus etanacept injections once a week each best thing i ever did before either drug i was only on metho tablets and on sticks every winter,these injections which i use once a week are a miracle for me i work full time rarely have any pain at all in my feet and ankles can walk for miles no tiredness ,i have had a full wrist anthroplasty due to crumbling wrist joint but feel awesome so i would say find out about methotrexate in injection form its easier to deal with its just once a week, stick with it and focus on what it can do for you not the side effects
Posted Sun 27 Nov 2016 19.14 by ali - 67 from Hampshire
I have Psoriasis and I think psa ,I’m 65now and think have had it about 5 yrs.
I've written before on the forum, and been waiting for a referral. I ve just had a diagnosis at last from hosp. I was sure he would say it s just arthritis, in denial I think.
I have scalp and ears psoriasis, and now PA.
Lots of symptoms started to add up though. I have always had my throat/glands swell up when run down, I have other auto immune disorders, about 10yrs ago had symptoms very similar to M.E which never was given a 'label' and eventually I seemed to get better so dismissed it. .
Though I still have bouts of feeling really exhausted, without apparent cause. I have heel and wrist pain, which is like a sharp knife up the back of my feet. and pain and stiffness in them on rising. I have had one middle finger very swollen, and it was very painful, though now ok but still looks swollen.
I love my job, as a therapist, which fortunately is sedentary a lot of the time.
I didnt want to start medication yet, until I really have to, as I don't think I seem in anywhere near as much pain as most people on the Forum. I am a bit scared of what to expect though, on a positive note, my scalp drives me crazy and I did get a can of Enstilar to try from GP but it makes my hair very greasy and as it's long, I dont have time to wash it every day
best wishes to fellow sufferers Ali
Posted Thu 29 Dec 2016 23.03 by ewink
Hi everyone
I have had psoriasis now since I was teenager and diagnosed with pa after the birth of my first child I take the highest dose of sulfazaline and have one setriod injection a year although this year It has not really made much difference.
I am now researching diet and alternative medicine.
I have been looking at forever aloe gel but wasn't sure if to give it a try or not. I was bought it for a pre wedding present from a friend just to give it go. I have now been taking it 4 weeks and feel great. The first couple of weeks I had noticed the pain had subsided a great deal and was no longer taking regular co codomal and in weeks 3 and 4 it has seems to be clearing up my skin. I do still have aches and pains at night but no where near as bad as they have been.
Not everyone would choose forever aloe Vera but for me I would not be without. I do also try and drink as much water as possible and drink decaffeinated drinks.
At first I found it really hard to deal with and was in so much pain, sometimes I could not pick up my newborn baby as I was in so much pain. 2 years on and this is now part of me I am in less pain day to day but still have my flare ups. I take the good days with my bad days and live my life the best I can :) xx
Posted Tue 10 Jan 2017 22.48 by Hector23
Hello sorry you are having such a hellish time.
I can tell you that my rheumatologist will not prescribe methotrexate as I have a mood disorder.
I should also say I had an appalling reaction to sulfasalazine. Apart from a worsening of symptoms, it also caused an awful psychotic depression. I think it's not wise to take this if you've experienced mood issues. It does state very clearly in the leaflet that it can cause depression. Certainly does!!
I take leflunomide now, and seem fine on this.
Hope things improve soon.
Posted Sun 26 Feb 2017 00.29 by Bella
Omg...I feel totally overwhelmed and scared.ive had psoriasis for a long time but lately I've been aching badly legs knees arms hand feet,I spend the whole night tossing and turning I'm loosing my nails.ive been back and forth to the doctors with no results but yesterday I got diagnosed with psoriatic arthritis.ive been suffering for ages but put it down to living life on the wild side.i have a son who's 15 with special needs but he's amazing.i guess after I had him I was diagnosed with a underactive thyroid.then depression then psoriasis but have just got on with it .i grew up in Spain so drinking has always been a part of my life.i drink all the time so some people would say I'm an alcoholic but I don't fall over or ever forget my responsibilities I'm an amazing mum and I've always put 100% in to it ive done parenting courses took him abroad every year and been through more than anyone can imagine with him.i devote my life to him but now I'm petriphied they want to put me on methotrexate and it's a whole new life change for me.im trying to help my son choose his path in life(with collage)or (aprentiship) and he's freaking out majorly and I guess I'm just shit scared.do I go on meds or just keep going.im 35 and I've had to hear that my mums been bed ridden for a month waiting for injections to help her move.will I be like that soon if I don't take meds.i just feel it's all too much to take in.i should just man up and stop being so weak but it's hard and I feel I needed to get it of my chest before I had a mental breakdown xxxxxxx
Posted Fri 14 Jul 2017 07.48 by Gillikins
Wow so many different opinions about PSA drugs. I am newly diagnosed with a similar story to many of you all above. I am worried for the future as I have already had both knees replaced, my hip is not good and the steroid has reduced the pain but still left with limited mobility in my neck, shoulders and fatigue in my thighs. Going by everyone's helpful feedback it is possible that some meds will help further. My experience of managing the symptoms is to keep active but very little and often. E.g. Swimming 6lengths is too much so although you think u can do it st the time it is later in day everything reacts so I do 3 or 4 lengths very gently. It seems ridiculous that simple things are sooo hard but something is better than nothing and helps to keep muscles working and weight balanced. I feel for anyone with this cruel disease
Posted Fri 21 Jul 2017 18.08 by Fruitbat1
Hey you,
Try Amitryptline (yes its a antidepressant) but works miracles for arthritis pain. Start on 2 a day at 10mg each and work up if you need to. Best wishes to you hun x
Posted Sat 5 Aug 2017 11.58 by Midrac
Dear all,
For info, I’m belgian. Note also that this reply is NOT a promotional talk but my own experience.
I have visible psoriasis since my puberty, with the arthritic symptoms appearing a number of years later. The diagnosis was followed by a flood of possible pills and especially balms and ointments
To cut a long story short: nothing really brought relief. Dermatologists and rheumatologists kept on bringing up medication that regularly did more damage than anything else. A number of these so-called specialists were still denying the fact that this illness is actually genetic and not transferable by contact.
Trouble grew when I was prescribed statins (cholesterol reducing medication) as a standard cholesterol reduction medicine. Note that my cholesterol wasn’t too high, but I was born with a defunct heart and have since my mid-fourties bypasses and stents. Anyway, these statins unleached a surge in psoriasis. I stopped them immediately.
My lucky day came when a dutch colleague noticed my psoriasis and told me about a medication which, in Holland, was commonly prescribed for psoriasis. Note that he didn’t even mention arthritis.
This medication was a regular shot of Humira. Humira is the tradename for adalimumab, a product by Abbvie, previously Abbott.
So, duting one of my regular visits to my GP (my heart is not my only problem), I mentioned this product. Maybe astonishingly he was not aware of it.
Now you should know two things about this Humira. First of all it is very expensive. Luckily I live in a country where we not only pay a huge amount to taxes and social security, but we get something out in return. To give you an idea, a monthly dose (2 shots) cost 1100€, but due to a yearly renewable reduction from the social security I only pay 11€. I had to go through a testprogramme with 3 different medications before the product could be prescribed and I received the rebate. All three medications had serious side-effects (serious sleepyness, depression, constant dry cough) and after some extensive scans (one has to have more than one inflamed area, I had inflamation through my whole body) I at long last received my first approval. The testing took almost half a year.
Secondly, Humira is actually poison. No joke. Just read the small print on the website (https://www.humira.com/psoriatic-arthritis). Humira can, but not necessarily will, have serious side-effects.
Luckily for me it, up till now, did not. I’ve been giving myself twice monthly shots (there is a ’pen’ variation which makes this very easy) and can function (mostly) pain free with hardly a psoriasis spot in sight.
So, if you are willing to take the risk, this product can be a life changer.
Posted Mon 7 Aug 2017 17.28 by Anna
Hi, I have no idea if this will be of any use to anyone, but I thought I would share my experiences with the Psoriatic Arthritis 'drug scene'.
I am mid thirties and up until two years ago, I was left in a corner on painkillers having had various "diagnosises" from specialists; even being told that my problem was tight hamstrings!
Anyway, I finally got diagnosed with Psoriatic Arthritis and was put on Methotrexate tablets......... They did not like me in the least. I was quickly changed to the injection. This drug took care of my plaque psoriasis nicely and some of the swellings!
I would like to mention I was taking folic acid with both - a must to counteract the more severe side effects of the above.
After a year on Methotrexate, Sulphasalazine was added to the mix... This was another drug that didn't like me at all, and after being on it for three months with it not helping, it was decided that I was a good candidate for the Biologics.
I started taking Humira on top of the methotrexate three months ago and I can honestly say I think they've helped with the joints even though it can take over six months to notice a difference.
I have my review tomorrow, so fingers crossed the funding will renew.
I have to mention about a month and a half ago my emotional levels went off the chart and small plaques have come back, but they don't seem to be growing.
The main issue I have is the pustular psoriasis on the palms of my hands and soles of my feet. I cannot seem to get control of either. I have been using Manuka Honey products and they dull it a little, but they are still excruciating.
As I mentioned above, I have no idea if this helps anyone, but if there is a question I might be able to help with, just ask.
Sending hugs to everyone who has to deal with this excruciating and debilitating disease/affliction!
Posted Wed 13 Sep 2017 11.39 by Jonny_Shakes
Hi everyone. I'm hoping you can help me...
I've had psoriasis since my early teens (I'm now 32) and have suffered with joint pain for several years.
I recently had pitting in my nails and I noticed an air bubble had formed underneath my thumb nail. After researching it I found out that psoriasis can affect the nails and then I learnt about psoriatic arthritis - all of my symptoms were connected to psoriatic arthritis.
After speaking to my GP, I was referred to a specialist at the hospital and also had blood tests, an x-ray and a scan, I was told I didn't have arthritis (psoriatic arthritis wasn't mentioned) as there were no signs of inflammation or swelling. I then went to physio for several months and have tried deep tissue / sports massage but neither had any affect.
I currently get pain and stiffness in my feet, left knee, left elbow, fingers, thumbs, neck, ribcage, lower back, central spine and upper spine, with psoriasis on or near most of those areas.
Does anyone know if you can have PA without swelling or inflammation?
I have made another appointment to see the specialist and more blood tests are booked, but I'm certain they'll reach the same outcome as before.
I obviously don't want to have psoriatic arthritis but I believe I do have it and if there are medical treatments that can help then I want to be diagnosed next time I see the doctor.
Thank you for reading and any help you can give.
To take part, sign in or register with us