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

Posted Sat 15 Aug 2020 2.24am by Kath

Hi Sue,

I am new on here but just wanted to let you know you’re not alone with these feelings. I am 41 now and I was diagnosed with PsA when I was 13.

It is a horrible disease. But once you are on treatment and understand the disease more fully and how it effects you personally it gets easier. You still have hard times but again you will learn ways to help you cope. One way I look at flare ups is that I know it won’t last forever and I will be back to myself after a bit extra TLC.

Posted Sat 15 Aug 2020 9.03am by LadyJay

Hi Kath

Your post time was 2.24am do you have trouble sleeping?

Well, stopping my medication was a bad idea (for me), I have been very down and all my joints are hurting, my lower back is causing me untold discomfort all the time, and due to COVID-19 I have been unable to see anyone, but my consultant wrote to me and is going to arrange an appointment in September. Back on my meds now so hopefully things will start to calm down.

The back pain is new so I have to be kind to myself as best I can...

I have been advised that I could take Amitriptyline to help with fatigue/sleeplessness/emotions so if anyone is taking this does it help? a little fed up taking drugs all the time.

Thank you for reaching out, only when another person understands helps, because it can’t really be seen, and a non-suffer doesn’t get it!

Take care xx

Sue (LadyJay)

Posted Sat 15 Aug 2020 9.59am by Mrsp166
Living with Psoriasis and PSA :(

Hi Sue

I take amitriptyline at night an hour before bed. I take between 25-50mg a night depending on how my back is feeling.

I find that they help with the morning stiffness and you don’t wake up in so much pain.

I hope they give you some relief xx

Posted Sat 15 Aug 2020 10.12am by Mrsp166
Living with Psoriasis and PSA :(

Can I ask ladies if any of you have biologic injections?

I had my first appt with my rhumy nurse and she said they aren’t considering me for tablets, I’ve to go onto injections.

Stupid me was so blindsided by this news I forgot to ask where do the injections go etc! I’ve since found out it’s either tummy or thighs. I have my next appt on the 2nd Sept for more measurements and she said hopefully my approval for biologics will be in by then. I had fasting bloods yesterday and just waiting on a chest X-ray.

It’s all abit too much at times :(xx

Posted Sat 15 Aug 2020 5.28pm by Kath

Hi Sue,

Glad your back on your medication and hopefully everything will settle down soon.

Also yes, my sleeping patterns are a nightmare, I either can’t sleep at all (which is most night) or I can sleep the clock round.

I have taken amitriptyline (75mg) for years, I don’t find it helps now to aid sleeping but I know it does for my friend.

Over the years I’ve been on quite a few different treatments.

As far a a flare where you are saying you can’t see anyone, I fully understand that. Luckily when I spoke to my rheumatologist he prescribes me oral steroids instead of going for a drop injection. Hopefully you can do something similar.

Thank you for replying as well, I have never joined a group before so I was a little nervous.

Posted Sat 15 Aug 2020 5.59pm by Kath

The injections I take (golimomamb) go in my thigh but if it’s a steroid injection they can either be localised or if it’s a drop it goes in the lower back/top of bottom.

Also for pain in your back while trying to sleep, the best thing I got was a body pillow as you can use it to support your back in whichever position you sleep in. But if not a body pillow, definitely a pillow between your legs if you sleep on your side or under your knees if you sleep on your back.

Posted Tue 18 Aug 2020 5.51pm by Dysania

Hi there

Also new here, also newly diagnosed (a few months back).

Arthritic elements are not as bad as the skin stuff, but yes it's awfully bothersome.

I'm mostly here to read replies cos I don't think I can offer advice since I'm so new on my own journey, but talking is mightly helpful, I think!

Posted Fri 21 Aug 2020 7.26pm by Kath

Hi Dysania,

Like I have said, I’ve had PsA for about 26 years and I’m still learning new things. It is nice to be able to communicate with people who understand and that may be able to offer some advice or if not just the support of listening.

Obviously, every one is different and they way thing effect us are different, but I will help in anyway I can, based on my own experiences.

I’m the opposite to you, my skin hasn’t really been a problem for me, it mainly effects my head when it flares. But the side, the arthritis side, I have had plenty experience on that one. Also I have been on different treatments.

If I can do anything to help, just let me know.

Kath

Posted Thu 17 Sep 2020 12.40pm by adamtoll919

Hi All,

This is the first time I have posted as just joined up. Things have been getting so bad I wanted to reach pout to see how others are coping and dealing with it and what their prognosis was. First thing I notice is that there seems to be very few men commenting on here. I wonder if that means women are affected more commonly?

Anyway, I started getting psoriasis patches about 9 years ago or so. Wasn't much of an issue other than them being unsightly and getting dandruff because I got it around the tops of my ears and hairline. The real fun happened when I started getting serious knee pain after a game of football. I got a bakers cyst behind my knee and everyone assumed it was to do with a football injury and in fact there was a tear in my meniscus so that threw everyone off the scent of PA for some time. Finally diagnosed with it after years and started taking methotrexate which was a complete game changer for a number of years, maybe 2. But recently I have been experiencing severe pain in my chest and back and MX just doesn't seem to be working on that area. Weirdly enough it does still seem to be working on my knee which was a real issue for some time.

I'll admit to being scared by what the future may hold for me and this illness. If it gets much worse I'll find it really difficult to do any type of exercise or strenuous activity. Even picking my 10 month old baby up recently has become uncomfortable. What rotten luck this condition is. My thoughts go out to all of you too!.

Adam x

Posted Thu 17 Sep 2020 10.21pm by Mrsp166
Living with Psoriasis and PSA :(

Hi Adam

I too had psoriasis since in was 12 and was only diagnosed with PSA/AS and I’ve not even to go on to tablets, it’s straight for a biologic for me bc I went so long 11 years being misdiagnosed.

Take care Adam x

Posted Thu 17 Sep 2020 10.30pm by Kath

Hi Adam,

I found methotrexate stopped working for me after a few years but that when I was put on methotrexate alongside other treatments until they combination of two drugs that worked for me. I have had PsA for 26/27 years now and I have had to change treatments a few time or mix different ones together to work. At the minute I’m on leflulamide and golimomamb (Simponi) which are working well. Hope you can find some other treatments that work for you.

Easy to say but try to keep positive about things.

Posted Fri 18 Sep 2020 8.34am by Dobbo

Hi All

First time post for me as well. I've has psoriasis since for approx. 17 years - well controlled for about the last 7 but then PSA came along 3 years ago in the form of a swollen ankle. I got on methotrexate quickly and have had good control up until last month. I now seem to be aching everywhere - it seems to flip round my body - and more painful than I remember it.

I'm not sure if this is a flare or disease progression - how do you tell the difference?

The rheumy team have said I can add sulphasalazine to my mtx - has anyone had good results from that?

I can sure relate about mental worries for the future with this condition - Just trying to keep positive that wont progress further .

Posted Fri 18 Sep 2020 8.43am by adamtoll919

Hi Dobbo,

Yeah, it can be a real worry but I suppose you just have to take each day as it comes and it does seem that most people are able to find some way to control the symptoms and make life more comfortable so that is reassuring. I mean you never seem to hear about people with PA unable to move from their beds permanently and not being able to actually get up. I'm sure if it was that bad then there would be more media coverage?

It just really sucks that this is a condition without a cure seemingly and people barely seem to know what actually causes it, so odd. They say stress but I have never felt particularly stressed I don't think. Probably a bit more stressed now I have this condition though!

I suppose it can always be worse and have to thank our lucky stars it is not a condition that is terminal etc. It's good to know there are others out there that feel the same way and there is that support available.

Posted Wed 23 Sep 2020 4.37pm by Mac

Hi Dobbo.

I can remember my consultant telling me years ago, that they get very good results from sulfasalazine and mtx together.

Good luck.

Posted Wed 23 Sep 2020 4.47pm by Kath

Hi Doddo,

I was on sulfasalazine and MTX for years and it worked well for me.

Posted Mon 9 Nov 2020 11.59am by Dobbo

Hi All

Thanks for the replies - its strange that since I originally posted my symptoms seemed to die down for a bit - so I thought it was just a flare - hence I wasn't looking back on line for help. They now seem to have come back :( I had a particularly painful left jaw last night but this morning it doesn't feel painful!

I think I will jump on the sulfasalazine / MTX combo. Its really mentally exhausting trying to work out what is going and what will hurt next and how severe!!

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