Just diagnosed

Posted Wed 24 Jun 2020 6.34pm by Mrsp166
Living with Psoriasis and PSA :(

Hi to all!

I’m Lisa I’m 35 and I’ve had psoriasis since I was 11. Roll forward almost 25 years and now been finally diagnosed with psoriatic arthritis. Finally got sent to a Rheumatologist who ordered me an MRI in March and I finally got the results yesterday after being in agony, not only just with my back but also because I can’t eat, I feel sick, I feel like my back is breaking. it’s came back with 3 bones in my spine, 2 in my upper back and 1 at the bottom which are inflamed.

Please someone tell me they also feel like this during a flare up?

My GP is getting a hold of the Rheumatologist to start me on medication to suppress my immune system. I am totally freaking out and I feel like I can’t cope with this horrendous disease :(

Posted Wed 24 Jun 2020 7.13pm by RoseL

Hi Lisa, yes, I have felt just like that. I developed PSA without the psoriasis. I was diagnosed about a year ago and have had very similar symptoms as you amongst others. The important thing is that you're now in the system and it WILL get sorted. People will tell you all sorts of horrors about the treatments but in comparison to the disease it's a no-brainer. I have found methotrexate injections excellent for the big swollen joints I had but it doesn't seem to have helped with the axial symptoms we both have. Hopefully they will get you sorted with a biologic and things will improve immeasurably. I'm waiting to start mine having missed out on an MRI due to the lockdown. Distress will only make your condition worse and you feel more wretched. You will be in good hands and you will feel better. Everyone has something to contend with in life, this is ours. Try to eat when you can - small amounts nourishing foods and be kind to yourself. It is important that know that you are not alone. Rose

Posted Wed 24 Jun 2020 7.50pm by Mrsp166
Living with Psoriasis and PSA :(

Thank you for your kind reply Rose!

I am so glad I am not alone in this and others feel the same. I’ve been misdiagnosed for years and all the pain/swelling was put down to UTI’s so after been seen by 2 out of hours doctors I went on the phone to my GP crying between the horrid feeling in my stomach and the back pain my GP decided to check my MRI results and eventually realised that all the symptoms I have are pointing at this! She is phoning me tomorrow with hopefully a plan to start the tablets. I have managed to eat a small biscuit since Sunday night :( I honestly feel your pain as this is just horrendous.

Big hugs to you Rose and thank you so much again for your kind reply :)

Posted Thu 25 Jun 2020 4.17pm by RoseL

Hi Lisa, thanks so much for your lovely reply. I think we've all been misdiagnosed for years - seems to be a common theme. I've had problems since I was 18 but became extremely unwell on 2016 at 53 and after being told I was just anxious and menopausal by my doctor, went private and got a diagnosis of polymyalgia rheumatics. Three years on I saw another rheumatologist privately after another horrendous flare and total failure by my GP and was told I had PSA. I can't remember much of the last 4 years (thankfully!) - partly heavy duty steroids I think but thankfully there is now light at the end of the tunnel. Really hope you have had a successful chat with your GP and that things will start to improve for you with the correct medication. You need to have access to a rheumatologist, which I'm sure will be organised for you. We're all in this for the long haul so specialist continuity of care is vital. Big hugs right back to you Lisa! All the best for a positive future for you and yours. Keep safe. Rose

Posted Tue 30 Jun 2020 11.24pm by LadyJay

Hi Lisa and Rose

Hi I’m Sue

Just joined a few days ago, we are not alone, Having been missed diagnosed for two years, before anyone believed me I thought I was going mad, the relief when my consultant said what I had, well I burst into tears.

I have felt awful, sick, not wanting to eat, Unexplained bouts of emotions, pain in my hands and feet, now in all my joints..

I was on Methotrexate and Amgevita but have decided to stop them both, but hearing you Lisa say about your back, that is something that I have just realised I have been suffering with, but not thought it connected to PsA, you should get some relief If you are starting on Methotrexate, but as many of the post share everyone reacts different, I had many side effects, hair loss, sickness, fatigue like nothing on earth, it eased off but my symptoms flared up so I was the put on Amgevita last August and thought after six months that I was seeing improvements, 10 months on for me it didn’t last long and I just feel that my mind and body are ‘clogged’, don’t feel like me anymore, I’m sure there are so many sufferers that have lost who they were, we are all different now, and that has been the hardest part to accept.

Please know that I am here anytime if I can help, there is one thing I have learned it is simply to pace yourself, do only what you can and don’t push through the pain, it will only make it worse, you must be kind to yourself.

Hugs to you both xx keep strong. Sue ( also in Scotland )

Posted Wed 1 Jul 2020 8.47am by Mrsp166
Living with Psoriasis and PSA :(

Morning Sue

Nice to see a fellow Scot on here! It does not help us with the weather in Scotland! Any time I’ve went on holiday the pain quickly goes away and my skin clears up. Pity we don’t get the climate here!

I am so glad you replied and thank you for sharing your story with this horrendous disease.

I had a phone call from my GP to say I’ve to get my own specialist nurse who will be in close contact with me. Do you have one too?

It’s all very new to me and to be honest I’m scared of what’s to come.

Big hugs Sue we are NOT on our own and that’s something I’ve learned from being on here, even just to know that 1 person feels the same way you do brings a little bit of comfort.

I hope you have a good day.

Take care Sue x

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