Possible Psoriatic arthiritis diagnosis

csj87

Hi I have a possible diagnosis of psoriatic arthritis and was looking for some support. my health problems started 10years ago and it was at that time I had terrible scalp psoriasis.
I am a 25 year old medical student (in 3rd year)
I have ongoing autoimmune problems including graves disease and thrombocytopenia.
I have been suffering from swollen knees on and off since July and now swollen fingers and crepitus in shoulder.
I saw the rheumatologist yesterday, my MRI was normal and rheumatoid factor negative and now they are doing bloods and an isotope bone scan next week. psoriasis does run in my family and so does arthritis.
Has anyone got any tips in terms of what to expect with treatment, progression, the isotope scan, how it may affect my daily life.
I have been living with constant pain for 3 + years, it is funny how you get so used to it it is not until a doctor says its not normal you realise the extent of what you have been putting up with!
all the best,
Charlotte

dreamdaisy

Hello, it's nice to meet you and I am glad you have found us. I've had a long day today and am very tired, I'm afraid I can't answer too positively but I'll have a go.

I am sixteen years in with my PsA, like you I had bad scalp psoriasis when I began (and a fat left knee) but it took years before an accurate diagnosis was made. After five years of trouble I was given sulphasalazine, then over the years methotrexate, leflunomide, cyclosporin, Celebrex, Naproxen and now diclofenac (with omeprazole). I had two goes of some form of radiation treatment, three operations, and was eventually put onto the anti TNF drugs. (I am currently on humira, injected meth and sulph, these control the PsA but don't touch the OA which I have developed thanks to joint damage.) The sooner you can begin the meds the better so that the disease can be brought under some form of control.

As for how things will develop well, we cannot answer that because although we have good knowledge etc we all lack a crystal ball. Every one is individual in how they are affected, how quickly and in how they deal both emotionally and practically with the problems arthritis creates . Some cede completely to the demands of this disease, others fight it all the time, I'm one who employs a bit of both but that took a while to learn when to fight and when to give in. I'm givng in tonight so that I have some go in me tomorrow. Hopefully.

I wish you well and please keep in touch. DD

barbara12

Hello Charlotte
And a warm welcome from me, I am sorry I cant offer any help, I have OA, but I am pleased you have joined us, and see that our DD has given you some advice.Its so good to talk to people that understand some of what you are going through
I do wish you well with everything,you have gone though so much,I do admire your strength. xx

scattered

Hi Charlotte,

I'm 25 and I have RA, so I'm afraid I can't help with the psoriasis. As for the arthritis, many of the treatments are the same. Like DD I've done the rounds medication wise: I've been on methotrexate (oral), sulphasalazine, leflunomide, azathioprine, adalimumab, rituximab, prednisolone, etoricoxib and diclofenac. I'm currently on etanercept, MTX (injection) and hydroxychloroquine. I've had RA for six years and in that time have experienced periods of low disease activity and almost made it to a drug induced remission. Getting treatment early is essential: I have some damage but not as much as I would have if I wasn't on the drugs.

I've two degrees with RA, although neither of them were as involved as a medical degree. Sadly we can't predict the course of the disease or what is going to help you. It might help to be assessed by an OT, and you would also qualify for disabled students' allowance. That can help with buying you any equipment you need relating to your academic studies, and transport costs to and from uni.

Good luck with everything.
Scat.

stickywicket

Mine's RA, too though, as scattered has said, the treatment is much the same.

I wish we could tell you how it will progress and how it will affect your daily life but, unfortunately - or maybe fortunately - we're all different. Certainly, the sooner you get started on the right meds the better. The right meds weren't around when I was first diagnosed over 50 years ago but I've still managed to have a good life - got my degree, worked for three years, married, had kids and now grandchildren. It certainly wasn't painfree but you learn some valuable stuff on the way.

I hope you get some answers soon and remember we're always here to empathise.

tillytop

Hello Charlotte - just to add my welcome to the others.

I can't add anything to what has already been said, but hope you will find the forum as much of a support as I have done. We are a friendly bunch with plenty of experience of assorted "arthritises" between us, and you will be made very welcome.

Thinking of you and really hoping you get some answers soon.

Tillyxxx

csj87

Thank you for your swift replies, it's nice to not feel so alone in this!

To be honest it all came as a bit of a shock, I was seen by orthapedics first as bloods were negative and just assumed they would say physio (have had problems with patella tracking in the past).

But putting 2 and 2 together I had self diagnosed psa from reading and the rheumatologist thought the same, and when they rheumatologist said things like - do you get mouth ulcers, have you had rashes from the sun etc etc it all fell into place.

I am just worried about how I am going to cope with my degree, the medical school know what is going on but I fear if anything goes wrong and I miss uni they will tell me to take a year out. This is not an option, I had to take a year out in my previous degree due to illness and had to retake my 2nd year.

I am lucky enough that my parents have funded my rising BUPA insurance costs so everything has moved very swiftly, it was only just over a month ago when I was struggling to put my tights on and my boyfriend had to help me I realised it needed sorting out.

I have the isotope scan on Tuesday and results Thursday.

Only the small matter of my first in course assessment of the year to get through on Monday!

I already have DSA due to dyslexia but will be seeing occupational health etc once I have had scan results.

Again thank you for your replies, lovely to meet you all!

Numptydumpty

Hi Charlotte, and welcome to the forum from me.
I have RA, and I know what you mean about "getting used " to the pain.
Good luck with your degree.
I hope things improve for you soon.
Numpty

stickywicket

I don't know how you'll cope with your degree, Charlotte. I guess we all tend to cope in different ways. We have one or two on here who are doing/have done a degree. 'Starburst' is currently doing a degree in (I tihnk) some form of healthcare. Different people have found different things helpful eg voice activated software. The worst thing is stress :roll: which is itself stressful. I hope there is some form of pastoral care that you can access.

Tubby

Hi Charlotte,

I have PsA which was diagnosed this year. I too have scalp psoriasis, stiff hands, sore feet, a sore knee, increasingly upper back problems etc, etc. Extreme tiredness has also been a bit of a problem. However, I still work full time (I am an Education Manager at a Football Club), I still ride my bike, swim and generally do many things just more slowly than before. Don't get me wrong, I have bad times but I am sure that you will be able to cope with your studies and career with the support of the Rhuemys.

I am off to assess a bunch of new Triathlon coaches today so must rush but keep smiling and get used to taking many tablets

ali87uk

Hi,
I too have recently been diagnosed with psoriatic spondylitis in the last month after over 2 years of severe back and front pain, I've had operations to discount appendicitis etc as right iliac fossa pain so bad, turns out it wast psoas muscle responding to inflammation in my sacroiliac joint!

I am having steroid intramuscular injections, which do help but I find the pain goes elsewhere eg further up my back and to my front! Does anyone else find this?!

I too am 25 and work in a hospital, I find they're not very sympathetic employers!

Let me know how you get on x

csj87

Hello everyone,
Again thank you for your messages, I have my isotope bone scan tomorrow so will let you know how I get on. Finished my exam so off to bed in my Christmas jumper to catch upon some sleep ! Xx

dreamdaisy

Good luck for tomorrow, I hope it all goes well for you and it isn't too uncomfortable. Have a lovely snooze! DD

stickywicket

I hope the scan goes well. And the sleep

csj87

Hello, the scan went ok got injected with radioactive stuff and had to go back three hours later.
Had me in some funny positions which my knees and hips didn't like but it passed really quickly (was an hour).
Now results on Thursday afternoon, let's see what the doc has to say! I can't take non steroidal due to my platelet count and steroids turn me into a gibbering wreck!
All the best

ali87uk

Fingers crossed for Thursday, hope goes ok. Let me know what they say... I had MRI of my pelvis today to look for inflammation.
What treatment are you on at present? Where is your arthritis? X

csj87

Thank you, will post on here what doc says.
I'm not on treatment but had a preliminary diagnosis of psoriatic arthritis from the rheumatologist last week.
I have swelling in both knees on and off, few fingers, neck and upper back problems and a shoulder that clicks and crunches.
Hope everything is ok on your mri!

csj87

Hi everyone, so the rheumatologist says its not psoriatic arthritis. which is very good news. he says the bone scan only showed problems with my ankles (which are in pain at the moment) but this could be a false positive.
he says my crp was normal and everything else is normal therefore he doesn't think i have it.
also according to him "my knees weren't that swollen" when i saw him last week.
i am now being genetically tested for something called hemechromatosis???
apparently can cause joint pain.
also got told to up my thyroxine dose as it is too low.
so mixed emotions really, he seemed so sure of what i had and now seems to be clutching at straws. just kept offering me painkillers which don't really work anyway
hope you are all well

dreamdaisy

Diagnosing an auto arthritis is not an exact (or speedy) science. Some have all the classic symptoms, the 'right' blood results and ker-ching! diagnosis made but for others it can take a while. I began my troubles in 1997, I was classed as an 'inflammatory arthritic' in 2002/3, but the PsA diagnosis wasn't made until my skin obliged with a bout of P in October 2006. Mind you, that changed absolutely nothing treatment-wise.

As for pain 'killers' surely that has to be one of the greatest mis-nomers ever. I use the term pain 'dullers' because all they do is dull the sharper outer edges of pain: the stronger the duller the more they remove you from the pain, not vice-versa. :roll: One of the hardest lessons in learning to Live with Arthritis is learning to live with the pain. It's not easy. DD

csj87

agreed, I keep saying no when he asks if I want pain killers, but then think he doesn't understand that they don't do anything and sometimes at night I lie in bed crying because of it......... Does he realize I am in a lot of pain, am I making enough of a fuss?
I don't know, I feel something is wrong and I have been ignoring it for a long time and then I gear myself up for this diagnosis and he says no it's not that.............................

dreamdaisy

If you refuse the help (however paltry it may seem to you) that he can offer then that is not going to help matters or your relationship with him. The dullers have a part to play - they don't solve anything on a permanent basis but they do help us to get on, get by and get some rest. Doctors are limited in the help they can offer and we as patients have to make the best of whatever is there.

We understand pain, whether it's one joint, five or the whole gamut it's still outrageous but it's what we have and we have to live with it. There are various coping techniques, distraction is my favourite simply because if my brain is occupied with summat else it can't focus on what is hurting. It takes time to discover and learn one's coping strategies and as for him caring about you being in pain, well, I suspect he won't if you don't accept some form of pain relief. You are only hurting yourself and that is not ideal - what have you tried so far? DD

Nicchick

I agree with DD on the pain relief front as my GP is fantastic and has been an incredible support throughout but even we fell out over pain management. If you keep refusing the help that is offered then it will not be offered anymore.

Accepting that you will have pain is part of the battle as DD says - my rheumy nurse did tell me that I would have to accept that I would probably never be pain free ever again which is tough and I know it was hard for her to say. They are trying to fix us and find it almost as frustrating as we do that it's such a B to treat!

I have had a really bad year with arthritis but will say that I have had more pain in the past but I found it harder this year because I was exhausted and couldn't deal with it as well as I had before.

Writing down how bad things are and things you can or cannot do might be a start. I jiggle my medication so that I can do certain things - I have rest/working from home days and *save* good moments for when I need to be on top form.

Nic x