Newly diagnosed looking for similar experiences!

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.

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

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!

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!

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

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

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

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

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

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.

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 😀

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.

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

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.

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

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.

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.

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

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.