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

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