Newly diagnosed looking for similar experiences!

Posted Sat 6 Jan 2018 9.13pm by Lisamarie

Hi all, I’m so sorry if this is long but I hope a little back ground info will help with anyone’s understanding!

I have very recently been diagnosed with psoriatic arthritis. This is about the 5 arthritis diagnosis I have been given in the last 4/5 years. This is because I actually have very odd symptoms. I woke up one morning and my right knee had literally trebled in size! No accident, no injury nothing went through all the routes of blood tests whiched showed up no inflammatory factors, x rays showed swelling but no cause, mri same outcome, had keyhole surgery found nothing major. I have been given every medication you could think of and nothing worked. The swelling then eased slightly for a few weeks then came back with vengeance!! Only this time my left knee began swelling. Again every blood test I have ever had has all come back with no inflammatory factors. Specialists have diagnosed sero negative inflammatory arthritis, gout, rheumatoid arthritis you name it they tried to label it. Untill recently I was seen by a top specialist who noticed some red, dry patches behind my ears. I have never as far as I’m aware suffered from psoriasis but she sent me for more tests and this seems to be the best fit for my condition so far. I am now due to start a new biological medication within the week.

I was just hoping someone may have gone through a similar situation and could share their experiences with me.

Thank you for taking the time to read x

Posted Wed 10 Jan 2018 8.35am by kiwiwithbadknee

Hi - I also have psoriatic arthritis in my right knee, and it is getting rather tiresome, pain aside, the swelling is becoming more of a pain, and also the why it flares up.

My history is I was diagnosed with psoriasis October 2016, having always suffered with eczema, within a month I contracted whooping cough, which obliterated my immune system, whilst I was suffering (for four months) with the whooping cough, my knee swelled to 3 times the size, and I was referred to a surgeon, as I have had 2 previous surgeries.

After 2 months of tests etc, I was finally referred to a rheumatologist who diagnosed psoriatic arthritis, and he aspirated the knee and gave me steroid injections, this was April 2017. I had to go back in October to again have my knee aspirated, and more injections. now it is early January and again my knee is swollen, and I am contacting my GP to get my knee aspirated for the third time in less than a year.

I am following a low carb, low gluten diet, also avoiding the night shade family, I am seeing many health benefits, and although my psoriatic arthritis is playing up, my actual psoriasis seems to be more manageable. My end goal is too lose a load of weight, and be as light as possible on my joints, and hopefully the long term benefit will be my psoriatic arthritis becomes more manageable also.

Sorry I can't help much, but wanted you to know, there are many of us, in the same situation.

Posted Wed 10 Jan 2018 8.48am by Lisamarie

Thank you so much for your reply kiwiwithbadknee. I had my knee apirated 6 times and injected roughly about 5 times and wishing weeks it just came back again so I refused to have it done anymore as I felt it was causing more harm then good. It’s such a frustrating thing especially waking up every day not knowing if today is going to be a good day or bad. I’m due to start a new biological treatment in a few weeks. Iv also lost some weight and have cut aspartame completely out of my diet as I noticed I had increased pains/swelling when I had any of this. I hope you find some relief for your knee soon. X

Posted Wed 10 Jan 2018 9.07am by kiwiwithbadknee

Thanks Lisamarie, for your reply, please keep me posted on your biological treatment results.

I wish you luck with the biological treatment and I hope this gives you some relief. Take care!

Posted Mon 15 Jan 2018 8.45am by MyLittlePony
Diagnosed PSA January 2018

Hi Lisamarie

I’ve just been diagnosed too and about to start on Methotrexate in a few weeks. Like you I had a long history of symptoms. I’ve had osteoarthritis in one knee after an injury 18 years ago and had 2 surgeries. Bad back pain after my pregnancy 15 years ago (suffered crippling SPD whilst pregnant). Various blood tests, X-rays and mri over the last 15 years have not shown much. Tried NSAIDS but had to give up due to severe stomach problems. Developed RSI in my right arm about 4 years ago and had to give up my career as I could no longer work on a computer despite physio and painkillers.

Just over a year ago I was in a car accident- it wasn’t a bad one and I didn’t injure myself - but not long afterwards my other knee swelled up (to match my arthritic knee which had always been swollen). My wrists, feet and ankles started to hurt too and I had dreadful fatigue. I’m sure the accident was the trigger and I went straight to my GP who referred me. Inflammatory markers showed on my blood tests and inflammation showed in my knee joint and 10 months later PSA was diagnosed. I’ve had psoriasis since I was 2 so have been asking about the possibility of PSA for about 6 years now.

It’s odd as I’ve always said I wanted a diagnosis but now I have one I feel very low - and angry at my lot. I used to be so active and now I can barely lift a coffee cup or get in the car.

I’m interested in diet in controlling the pain - I too am losing weight (difficult being quite immobile).

Which biological are you taking? Have you tried methotrexate or similar?

Sorry for the long post - but feels good to finally write it all down!

Posted Mon 15 Jan 2018 9.05am by Lisamarie

Hi my little pony,

Thank you for your reply and sharing your story. I completely feel your pain!! My last lot of medication was methotextrate but I had to stop unfortunately as I suffered crippling migraines on it however it did help reduce some of the symptoms so fingers crossed it works well for you!

I’m in the same boat as you with mobility making weight loss harder but I have signed up to slimming world and have lost an increadable 2 stone in just over 5 months!!!! I have also cut aspartame out of my diet as it caused huge flare ups if I had it! It’s hard to avoid as it is in most sugar free/ low fat products but it has made a huge difference aswell.

I know exactly what you mean about how you feel after diagnosis. I have had so many different diagnosis over the years that I was beginning to give up hope of getting answers. I was starting to think it was all in my head. Then when I got this diagnosis I was relieved then when it sinks in I started to feel angry. I’m 30 years old, my lil girl is nearly 2 and I can’t do half the things other mummies can do. But then I started researching the condition and it has helped me understand it more.

I’m due to start on Cimzia in the coming weeks and I can’t wait!!!! Really hoping it helps!!

Feel free to messege any time! I find talking about it really helps!

Xx

Posted Mon 15 Jan 2018 9.42am by MyLittlePony
Diagnosed PSA January 2018

Oh totally remember when my daughter was little and I couldn’t join in with a lot of the stuff my mum friends did. No one seemed to understand the pain.

Well done on the weight loss - that’s an amazing amount. I joined back to SW 10 dats ago but struggling. I was ok until the car accident - but piled on 2 stone last year (immobility and taking gabapentin for a slipped disk in my back - yes I’ve got that too!). I’ll try cutting sweetener out (don’t have much though). Sugar sets me off and too much dairy.

I’m dreading taking methotrexate- all I’ve heard is bad things! Plus I love a glass of wine in the evening - seems to be the only thing that takes the edge off my pain before bed! I know you can’t drink alcohol on methotrexate- I’m not a binge drinker - I rarely have more than a glass - but it’s a big part of my relaxation time! Does that sound bad? I may ask my consultant if I could try something else instead.

Best of luck on your new meds - hope they work for you. X

Posted Mon 15 Jan 2018 10.16am by Lisamarie

I found a lot of people just see arthritis as achy joints. They don’t realise it’s sooooo much more the. That!!

I still drank on methotextrate. Like you just a glass of wine now and then and I was fine. It does work so worth giving it a go as it responds differently for others.

I ablaolutly love slimming world. I done it a few years ago and missed it after reaching target so rejoined and glad I did as I haven’t rid the baby weight yet! You really notice the difference in pressure of my knees.

Hope the methotextrate helps you Hun and good luck with sw. xx

Posted Thu 18 Jan 2018 11.16pm by Bookworm
Working mum with dog, cat, husband and ‘tin man’ joints

Hi I have been diagnosed today with PA. can’t even spell it yet! After 3 months of endless tests and shuffling around like someone 40 years older. I am 50.

My mum has been covered in Psoriasis all her life but I’ve only ever had 2-3 tiny patches. Usually on my scalp. 3 months ago a tiny patch appeared on my left eyelid and within 24hrs I was aching all over and had very sore and swollen feet/ankles and sore shoulders and leg muscles. Lots of tests, CT, X-rays and a month of Naproxen it’s now just one shoulder and slightly in one ankle. The patch went at Xmas time. Had 2 x steroid injections today and some more pills — beginning with C. Tonight I was able to get out of the bath myself and get undressed unaided! So am hoping it’s just a flare up and it’s going to settle... am I being abit naive?

Anyone else got it without the skin Psoriasis as well?

Best

Emma

Posted Fri 9 Feb 2018 7pm by Jangee55

Hi I'm newly diagnosed though suspect I have had pSa for a few years now. Looking back I have had increasingly painful finger and wrist joints, neck and shoulder pain and now have extreme lower back, SI joint, stiffness and pain. Also, just started today with terrible pain in my left heel. It's hurting just to put my foot down and try to walk at the moment.

The only evidence of psoriasis was two red, flaky elbows so I didn't associate with my joint pain. Now that has faded to just slightly raised and pinkish.

I had my first rheumatology appointment last week and had feet, hand, hip and SI joint X-rays and more blood tests. As my back was so bad they gave me 2 steroid injections near the base of my spine. I have a follow up in March when I will start taking Methotrexate so I'm really hoping it will help. In the meantime I have Naproxen and codeine to try and help me get through the day and also to sleep at night.

This current 'flare' has been getting worse since October and I wonder if it will ever go? Now, with my heel pain just starting I feel like I'm on a never ending cycle of pain and decreasing mobility. I still have to work or I think I might just curl up in a corner somewhere.

I also have auto immune thyroid disease - anyone else with this too?

Best to everyone battling this horrendous condition xx

Posted Sat 3 Mar 2018 9.13pm by Pugfan

At the end of 2012 I had surgery to remove all 4 of my wisdom teeth as they were impacted and never going to grow properly. All went reasonably well and was all healed up and normal within 4 weeks.

7 weeks after surgery i got a really sore left knee. Was back and forwards to the gp. Put on naproxen for the pain. About 5 weeks after that the right knee joined the party. Gp was able to draw fluid out of both knees. It was tested but nothing found in the fluid. My blood work has never shown anything at all.

Was refered to rhuematology. Had x rays on knees which I don’t think looked great but again nothing to diagnose.

After a year my elbows started to be sore as well and now my fingers and wrists and hips are often sore.

Have been on sulfasalizne for about 4 years, take cocodmal for the pain.

About 2 years ago i started to get an itchy scalp and ears which looks like psoriasis.

Bloods have still never shown anything!

I’ve now been in agony since before Christmas. Everyday is a struggle and it’s making me feel down. I’ve now come out in a hive like rash which my gp says is a non specific rash. Was at the consultant at end of January who now says i have psoriatic arthritis and not rheumatoid arthritis and i have been put on methotrexate. Have now has my third dose and don’t notice any benefit and my bloods just came back showing that im anemic.

Find that doctors just want to throw drugs at the problem but never even give you a proper diagnosis. In the 5 years since this all started I’ve only ever had a xray on my knee.

Posted Mon 5 Mar 2018 8.02am by CPZE

Hello,

I’ve had Psoratic Arthritis for a number of years now and take Methotrexate and Sulphasalezine ( sure I’ve spelt this wrong). I am overweight and really interested in finding out how diet can help, not just on how it can relieve pressure on joints. I’ve heard that a reduced gluten diet and aspartame can help, but was wondering if anyone else has tried other foods/removed foods and seen a difference. I am allergic to quite a few fruits, nuts and raw potatoes. I find I can eat the foods once they’ve been cooked because of the way the enzymes change during cooking. I also hav an under active thyroid which I’ve been taken medication for the last 30 years. Feeling fed up with it all, just want something to change. Any thoughts/advice would be greatly appreciated 😀

Posted Wed 21 Mar 2018 2.02pm by mungflesh

I found that red meat, chilli and alcohol aggravated my PA.

Taking methotrexate for a few years eventually allowed it to calm down and it went away. The dosage dropped and I came off it - primarily to start a family - but during that period it did not flare back up again, so I did not re-start. I'm not suggesting this will happen for anyone else but just telling my story.

I find the sun is always the best remedy for my psoriasis or PA.

After that, I notice that hard exercise which really gets the heart rate up and pumps the blood makes a difference. I appreciate that, for people really suffering from the pain of PA, this is a tough one to get started on but I feel it is currently keeping it bay for me.

It's as if the exercise is preventing things good or bad sitting around in my body and fast-tracks the whole digestion process.

I am no scientist and can offer no proof but I know that it makes me feel good so it's what I stick to.

It does not help with my psoriasis but doesn't make it worse either.

Posted Wed 21 Mar 2018 8.28pm by Lisamarie

Hi all thank you all for your posts and sharing your stories. I thought I’d give a little update on how things are going.

Well yesturday I started a new corse of treatment called cimzia which is a biological treatment. It means I have to inject myself every 2 weeks 😞 but I have hear amazing reviews about it so I’m feeling hopeful. I had a bad flare up after a fall a few weeks ago now and it left me immobile for a couple of days but this time round it only lasted a few days! Which I see as progress! I have also lost around 2 and half stone and I can feel the benefits on my knees already! The skin psoriasis has progress though to my scalp and elbows but that doesn’t bother me as much as the arthritis side does.

I will keep updates on how the new meds affect me and if I see any improvements! 🤞 🤞 keeps smiling everyone and keep fighting this rubbish disease! Xx

Posted Thu 22 Mar 2018 7.01am by ChipButty
I have has psoriais for 20+ years. Psoriatic arthritis developed in 2003.

Hi all, I've had psoriasis for 30 years and PsA for 15 years. In terms of drugs for that 15 year period started with Ibuprofen, then sulfasalazine, then added methotrexate and now Humira, a biological. I found that the slow progressive nature of the disease means I didn't realise how bad things become. Your activity reduces, your mood drops, put on weight, etc. Until I started on new meds and the symptoms improved enormously and you think to yourself why didn't I do this earlier. If you are struggling would encourage you to tell your consultant that your quality of life has deteriorated significantly. Those seem to be the magic words and usually result in a step change in treatment. However you will have to follow the NICE treatment pathway which you can download from their website. The consultant must follow this pathway for your treatment.

I have had numerous steroidal injections over the years. Took a while to find the right one, which for me was Kenalog. I haven't needed one since I started Humira 18 months ago and my psoriasis has gone, which is fantastic.. I still drink a small amount of booze, up to 5 units, once a month, but soon after my latest blood test so I don't get a bad result next time. I like beer too much to stop completely but also have a range of low alcohol alternatives that I drink too. It's a long and winding road, but wish you all the best in your treatment journey.

Posted Thu 22 Mar 2018 7.13am by Lisamarie

Hi thank you for sharing your story “chipbutty”. I think Hurima was one of the options offered to me when biological treatment was being considered but due to me wanting more kids in future cimzia was the best fit. It is so true you don’t realise how bad things get until you actually stop and think about it. I’m so please your treatment is helping you! Gives me a bit more hope for mine. It’s been going on far to long now and even though I know it will never go completely just to get a little bit of normality back will be great. I hope it carries on the correct path for you

X

Posted Sun 25 Mar 2018 9.15pm by MrGimpy

PA, with which I have fairly recently been diagnosed, is a VERY weird disease. Mine jumps all over the place, even day to day, from this toe to that toe, this then that finger, to a shoulder, to my ankle, on and on. The fatigue is a constant. My biggest flair, on the basis of which I was diagnosed, began when I accidentally stabbed myself in the hand in the kitchen (dumb). Within a couple of weeks, I could barely walk, and I mean barely. That's a weird disease.

Now I have the right doctor and am on Methotrexate and Ebril, hoping for the best.

Posted Tue 3 Apr 2018 6.41am by helloworld1990tim

I'm feeling sorry for your condition. These symptoms are very rare but still found in many people. I guess you should use some support for your kees(https://www.aids4mobility.co.uk/neo-g-closed-knee-support-pr79051-able2) and I hope you will be fine after correct medication.

Posted Tue 3 Apr 2018 2.10pm by Lisamarie

Thank you helloworld1990tim,

Unfortunately due to the amount of swelling and fluid on my joints supports are not an option or I’d have no movement at all.

But on an amazing note for all who are following this I started my injections of cimzia 2 weeks ago. I was told it would be up to 12 weeks before I would notice any changes but some people had reported improvements working a few day. Well all I can say is I wish I had been given this medication years ago!!!!!!!! Within a week of my injections my knee had reduced in size and the pain had almost completely gone!!!!!!! For the first time in years and years I was able to kneel!!!!!!!!! Had my next lot of injections today and I’m really feeling hopefully I have cracked it!!!!!! I would deffo encourage you all to speak to your specialists and see if cimzia is an option for you!! It takes a while to go through the screening procedure and waiting to be accepted on the treatment but I can safely say it’s sooooo worth it!!!

Take care all xx

Posted Tue 3 Apr 2018 10.08pm by Glitterdust

Hi All,

Apologies in advance for this novel.

I recently was diagnosed with PsA after a long battle and being made to feel like a hypochondriac.

It started with bursitis in my feet nearly 2 years ago and I was told that the radiologist thought it was arthritis but I was fobbed off by a rheumatologist after blood tests. They kept telling me it was the pain of an existing condition that I have hypermobility syndrome and I told them I knew that it wasn't. I went back to the GP and told them I was in a lot of pain and finally had an ultrasound showing bursitis. I was just given painkillers and pretty much left to ride it out. When I saw her podiatrists she didn't even offer me steroid injections despite me not being able to walk.

I had some blood test once I've started my new job and I explained that the pain was worsening and deformities were appearing in my hands and feet. I was sent for blood tests. The blood clinic initially said I had attended. I was then told that I had attended without a slip and they taken my blood anyway which is ridiculous and not true so I never got the results.

At this point I just wanted to give up because everyone kept telling me that I basically was experiencing the same pain I had experienced all my life when I knew it was different and I had deformities. I explained to the GP that I really needed to see someone's specialist and they referred me to the rheumatologist and for blood tests again.

I had more blood tests. I got a text saying that I needed to speak to the doctor about results. I've previously been low in vitamin D so I said to the receptionist if it's just something about vitamin D I don't need to speak to the doctor I'll just take supplements. If it's also saying that they're normal please don't book me an appointment because I don't want to waste anyone's time. The first receptionist told me that it may just be they want to talk about next steps. The second receptionist told me that I had high potassium levels and everything else was fine. I decided to have a telephone appointment. I had a telephone appointment with the local and he was very patronising and rude. He told me that I showed high potassium levels because the phlebotomist had ruptured a blood vessel and then asked me whether I had a cold. I said I have a cold now but I didn't have one when I have my blood taken and he said the reason behind your high inflammation levels could be because of your cold. I asked whether he thinks that I need to see someone else. He told me he didn't think so and maybe I should book another appointment.

Again I was confused wondering whether this was all in my head. I have had psoriasis on my scalp since I was 4 it was only when a work colleague suggested that it may be psa I decided to go to the doctor when I started to get psoriasis on my feet. In the meanwhile I received a letter for referral to hypermobility clinic with a 3 month waiting time to get a referral. I luckily got to see a locum doctor Who looked at my blood test results and said I needed to urgently see a rheumatologist. The rheumatologist was friends with my previous rheumatologist and laughed and said it seems as though you've got hypermobility syndrome and for this there is no cure but I will send you for a blood test and MRI just to rule it out.

Before my MRI my little finger decided that it was going to face the completely wrong way. I went to A&E and they told me that I had a calcified tendon in my finger and that it must have been that way for a long time. I knew this wasn't true. I was referred to an orthopaedic Trauma Team. While waiting for the orthopaedic Trauma Team I had my MRI. When I saw the orthopaedic surgeon and her team she told me that I did not have a calcified tendon in my hand and she could see a lot of inflammation in my hands from the MRI. The rheumatologist had booked the appointment for 2 months after he'd seen me she said I need to see him urgently. They also told me they weren't interested in surgically operating and my hand because they did not think they could help me but they were going to refer me to an ultrasound anyway just to rule stuff out.

I managed to rearrange my appointment with the rheumatologist and finally eating a slice of Humble Pie he admitted that all the tests have come back to show that I did in fact have arthritis and started me on sulfazalazine. I waited what felt like an age to get an ultrasound and eventually the NHS referred me privately the private doctor so instantly that a tendon in my hand had ruptured he then gave me a steroid injection. When I saw the Trauma Team next they also ate some humble pie and admitted that surgery was the only option to help my hand after months of splints. So all in all this is not been a particularly positive experience and I would be grateful for any hints and tips for anyone who has an aggressive form of psoriatic arthritis.

Prior to treatment I had a new joint every 3 weeks affected with sulfasalazine after 2 months I have only one new joint affected. I'm 27 I would like to live my life to the full say if anyone in particular people suffering with deformities to the hands and feet could offer any advice I would be so grateful. If you read to the end you deserve a medal thank you.

Posted Tue 3 Apr 2018 10.47pm by Lisamarie

Hi glitter dust.

Firstly can I say I’m so sorry you had to go through such a fight just to get some answers!! I know exactly what that’s like and I put it down to being so young the doctors just do not take you seriously. I had many many bloods done, x rays, scans you name it they sent me for it only to be given so many different excuses.

The most important thing I can suggest to you which I have done and makes a huge difference is to completely cut out aspartame from your diet! It’s quite difficult as it is in 90% of all diet/sugar free products and even some non diet/sugar free foods/drinks. But believe me it makes a huge difference. Also ice treatment I find works really well. Really hope your new treatment works for you. It didn’t help me but now I’m on cimzia injections and it seems to be doing the trick. I was younger then you when mine first started so I completely understand how your feeling right now about living your life to the full. It is a horrible disease but I find talking to people who are going through the same thing really helps and speaking to your arthritis nurse also is a great help. Please feel free to messege me any time Hun xx

Posted Wed 4 Apr 2018 0.26am by Glitterdust

Thank you Rosemarie, I'm wishing you all the best. I've been searching long and hard to find advice for people who aren't 60 odd. It's great to not feel alone. I'm more angry at the fact that I have to have a surgery that could have maybe been prevented than the disease itself. Definitely will avoid sugar free. Xx

Posted Wed 9 May 2018 3.48pm by Chrissie NW

Hi LisaMarie Im so glad i saw your discussion Ive had Psoriatic P for over 50 yrs and Im going to see my Consultant next month I dont want the4 cancer drugs etc which make you sick, so now I have seen your remarks about the Biologic Injections Im going to go for them, great news as I thought the Biologic Inj were not avail until the end of this year. Thanks for sharing I dont usually say this, but I cant wait to go to the Hosp to see him.

Fantastic whoppee!!!!

Posted Wed 9 May 2018 4.30pm by Lisamarie

Hi Christie BW

Thank you for getting in touch. Being put into cimzia was the best thing to ever happen!!!! I literally cannot speak highly enough of it!! It literally has completely changed my life! I recently went abroad on holiday which I was dreading because in the past I had been restricted on the excersions I was able to do plus a day of walking and exploring would often have left me in pain. However this time was 100% different!! I had no flare ups, no pains and was able to fully enjoy it!!!! Still not used to having to inject myself every 2 weeks but I’ll take 15 seconds of discomfort over pain anytime!! Good luck at your hospital! Do some reading on cimzia first to prepare yourself! It’s really interesting.

Let us all know how you get on

Take care xx

Posted Wed 9 May 2018 4.56pm by Chrissie NW

Hi Lisamarie thank you for your reply and for being so helpful I will let you know how I get on with the Consultant, I would be so pleased if he will let me have the Cimzia, I cant see why not, but I, like a lot of people tend to get pushed on to the Methoexrate etc and I dont want the Systemic Drugs Ive been following a trial done on the Biologic Drug which is been produced for Psoriasis, so its the Psoriasis that works on and not your organs and leaving you feeling awful, Im not prepared for a life of sickness, so when I read this trial done at the Manchester Hosp I was o er the moon at the success rate, but if stated it would not be available until the end of this year, so reading your story I just could not believe it, I cant wait to see him next month, but I will read up on Cimzia, so Im prepared when I go.

will certainly keep in touch with you and thanks for everything. This is a terrific site and its wonderful that people can discuss there illness openly and seek advice from other members, I love it. Thanks again Lisamarie.

Chrissie

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