My story - PsA diagnosed 1yr ago.

keith1971

Hi everyone, my name's Keith & I'm 39.

Was diagnosed a year ago after my middle finger was swollen (big fat sausage finger!!) over a number of months after an accident. By the time they pin-pointed that it was PsA, erosion had already taken place & now I have roughly 50% less use of that finger (i.e. it doesn't bend like it should). Have had two steroid injections in the joint which has helped taking the swelling down but not affected movement much (I'm kinda permanently flipping people the bird!).

I was prescribed Methotrexate in May 2010 (10mg per week) but have yet to take it due to my fears over it's general toxicity and perhaps my own denial/ignorance of my condition. I figured I didn't have RA so everything would be alright.

Right now I am fully mobile but have sharp pain (but no visible swelling) in both ankles when walking (varies in intensity, sometimes very mild), mild pain in left elbow & shoulder (more a nagging ache), sharp pain in right knee which comes & goes, mild stiffness and pain in my right middle finger & thumb. Nothing that I can't live with right now, I don't take painkillers.

Basically my old Rheumatologist was keen for me to start on Methotrexate but I'm in the process of going private & seeing a new one for a 2nd opinion as the dept. at my local hospital is pretty poor in my opinion (Royal Free, London). I have my first consultation this Thursday.

My all consuming fear right now is of becoming disabled & not being able to play with my son as he grows up (he's nearly 3). I know everyone's course with this disease is different & levels of damage vary wildly. At the moment I feel like I've almost read too much & too many horror stories & the fear & resulting depression/sense of hopelessness is absolutely crushing. I guess my brain's hurting trying to process everything more than anything else right now.

;-)

K.

suncatcher

I haven't got psa i have Ra but i remember wondering if i would be able to play with my son. When mine started my son was six months old i felt like a ninety year old. His granny not his mom.
He is six now and we play. I need more rests than other mommy's but we have fun. and i don't feel ninety. I feel like mom again maybe an older one. You will two.
Take one day at a time and don't read the negative stuff concentrate on the positive. I hope metatraxate works for you and wish you well. Joanne

barbara12

Hi Keith
And a very warm welcome to the forum, I have OA in multiple joints, I cant really help with your meds, but I do know that when I googled my meds and the OA it terrified me, some info is good but sometimes it can be so depressing.
I do hope your second opinion goes well , and they can advise you more.
And dont forget we are always here to listen when you want to talk or even have a rant now and then.
Please let us know how you get on
Barbara x

Poppyg1rl

Hi Keith,
Wow, we actually have quite a lot in common! I'm 39 and was diagnosed a year ago March 3rd with PA. My index finger was red and swollen to begin with, which as I have private health care was seen by a consultant Rheumy immediately. She did X-ray, scan, bloods saw high inflammation and I had a patch of psoriasis on my neck/scalp so was diagnosed with PA was put on Sulfasalazine, a few months went by and things settled down, then I had a major flare, my thumbs, all the fingers in my left hand, toes, and shoulder were hugely painful. Thankfully my Rheumy referred me back to NHS and I am still under her care. Along with the Sulfa I was put on Methotrexate 15mg (this is now 20mg) and was given depo med steroid shot. my knee is now flaring and has been very bad, my Rheumy has now given the go ahead for anti TNF treatment and I'll start injecting Humira on 18/03/11.
The reason I'm telling you all this Keith is that everyone is different, but
we all struggle with the initial diagnosis and who wouldn't? It's a lot to
take in and accept. I don't know how much worse I would have been had I not been seen so promptly and put on meds, I think personally my PA would be a lot worse if I was not on medication, it is an unpredictable disease and no one wants to take strong drugs but then equally I don't want the PA to affect any more joints. If I can make a suggestion? Give the helplines a call, they are kind, knowledgeable people who can help and assist in a number of ways, perhaps to put your mind at rest over your fears, it does help to get it out.
Sorry for the long 'ramble' PM me if you want to chat anytime
All the best Poppy X

tjt6768

Hi Keith, just wanted to welcome you to the forum matey

Hope that you are doing ok..

This place is great for info, the real stuff too, none of that thinkipee'dinyapants stuff

Be well, hope to bump into you on here..

rugbygirl

Hi Keith

I have recently been diagnosed with OA of the spine and like you I spent time looking on the internet and reading up on things without actually talking to people who have it.

I had fears (and still do occasionally) that I am going to become a burden to my family and not be able to do things for myself. I am 39 and I have three children who are nearly 18, nearly 16 and nearly 12. I cannot function on a daily basis without my meds because I am in so much pain without them.

What I want to say to you is that by joining this forum you have done a great thing. The people here are so helpful and friendly. They will give you advice and explain things to you in a way that the doctors cant. Everyone understands how you feel, not necessarily with your particular type of arthur but emotionally. I think I can safely say that everyone on here has worried, been scared, and at some point felt very sorry for themselves. Without the support of the people on here I would be a blubbering wreck in a corner but not now. I have started to face up to what life has dealt me and I have decided that no matter what happens I am going to make the most of my life and not let it get to me. Ok so I might have to do things slower or take rests more often than others but it doesnt (and wont) stop me doing what I want to do.

The support on here has been amazing and without the friendship here I would still be reading on the internet and panicking that I would be in a wheel chair by next week! We are all different and we all have different types of arthur but we are very much the same in how we feel.

Dont be alone, voice your thoughts no matter what they are and someone will be along to pick you up, put a smile on your face and to let you know that you will never be alone.

Life has changed for you but dont let it rule you. Dont worry about what you might not be able to do in the future live for today. Make the most of playing with your son while you can, and if you cant play with him one day just try and find something else you can do with him. Negative thinking isnt going to help you with this disease. One thing I have learnt today is that no matter what you can or cant do with your children they will never stop loving you. You will always be their parent and they will love you unconditionally.

Hope that you soon feel better about things and dont forget we are here for you

dreamdaisy

I had five years without meds, 'cos no-one recognised what was wrong, then and another year before I started the meth then another three years beore PA was diagnosed. I am now on a host of other meds too and I am certain that if I had been offered the meds earlier my life now would be very different.

We take very, very low amounts of meth compared to cancer patients. Meth has an image problem thanks to that disease, which I think is a shame because for many people on here it is a very effective treatment. I have 15 ml injected meth per week - I have had two bouts of mild nausea in the past three years, I don't think that I have lost any more hair than I would expect, my liver is absolutely fine, basically I have no problems with it. I can understand your reluctance to take it but I suspect that in the long run you will only damage yourself further. Meth can slow the cell renewal that leads to inflammation and thus reduce joint damage - but only if it is taken. It is pretty useless when left sitting on a shelf.

You are fortunate that you do not, as yet, need to take pain dullers. As the arthritis spreads (as it probably will, it has that habit) you may find that you need to start those, so please be aware that they can be equally toxic.

I would very much like to have the choice about what to do: unlike you, I have a long, long history of taking meds of all sorts this has stood me in good stead. I never think about side effects, I just hope for the benefits. I wish you well. DD

skezier

Hi Keith,

Welcome to the forum its a good place.

I just wanted to reassure you really that you will be able to play with your son though you might have to modify the games here and there.

With this bone stuf a bit of decent control and pain relief makes a huge difference and well mtx is a good drug and can really help..... i know there is a raft of side effects on the box but you might well not get any.

I was kinda lucky and welcomed mtx to be honest.... I had had sulfa for almost a year and had reacted to it big time so well after that mtx has kinda been a breeze.

Its hard cus of the leaflet and the raft of possible side effects but i sort of think you might get some side effects but you might not and against that one you have the condition and it need clobbering hard to get it controlled.

I don't read side effects now a days cus I was put on some stuff a while back and one of the side effects was sudden death.... sometimes its best not to know.

oh and that wasn't the mtx.

I have a fair bit of pa and mine isn't playing and has already done some erosion. I wish they had hit it hard when it started cus its never been under control and is really hard to knock back after so long of a free rein.

You can kinda tell my advice is to chuck away the side effect leaflet and try it..... you may well get a good response and no side effects at all on a low dose. I didn't react to it with nausea till I went to 17.5 and well the gp can help with a lot of the side effects as well...

I know its more tablets but your body adjusts to it and then you can drop them again.

Keith it is important to hit it hard in the early stages..... it easier to knock it back and the bones may not be damaged. The longer you leave it the more chance there is of it doing damage to the bones.

I do wonder though if you are on any anti-inflammatories? Sometimes they can help reduce some of the swelling and inflammation.

Good luck on Thursday but you know the other was right to prescribe the mtx cus the view now is the harder you hit it in the beginning the more you protect the bones.

hey we do half decent pocket duties if required We are available if you need us. Nice to meet you and fingers crossed you get some help that you feel happy with on thursday. Cris x

julie47

Hi keith
welcome to the forum.
I have ra and got it a couple of days after my daughter was born. At first I really did struggle and I was worried too about not being able to play games as she grew up. I had gold injections as these new drugs were not around 23 years ago. Guess what....they really helped. I went to work part time when she started school. I taught her to ride a two wheel bike at the age of three and we had a real good time on holidays and her birthday parties..I was only watching the videos of her a week ago, it was lovely to see her and what we as a family did together. (she gets married in a couple of weeks).

I am now on methotrexate along with a few other meds, I don't like taking them (as no one does) but if i didn't I wouldn't move.
I don't read side effects either otherwise it woul really put me off.

Good luck with your appointment on thursday

Take care
Juliepf x

keith1971

Thanks for such a warm & supportive welcome everyone and for all the first hand advice, especially regarding the drugs.

I'm still very scared about what the future holds for me & I hate the fact that I'm already being defined by this bloody disease! I wake up in the morning thinking about it & go to bed thinking about it!! It's very hard to concentrate on anything else right now, something that hopefully once I get this 2nd opinion & most likely the drugs, I can address & get on with living life as best I can.

Right now my mind is made up to follow whatever treatment the new rheumatologist suggests - my denial of the situation isn't going to help matters in the long run. I guess at first it's hard to accept that you're never going to be like you were before & though it may get better in terms of pain etc., the underlying problem will always remain. I'm the kind of person who like absolutes, deal with everything in black & white, so coping with something so ambiguous is a bit of a head trip!

I'll let you know what happens this Thursday, I imagine I'll have to get more tests done before I know anything & what my course of treatment will take.

K.
x

suzygirl

Just wanted to wish you all the best for your second opinion. It is very hard to accept you have a chronic illness, and that life will not be as you imagined. You have ups and downs, and twists and turns, but you do manage to carry on. Some really fortunate people once on meds, live near 'normal' lives.

The rest of us muddle on as best as we can. The meds are difficult to get your head round, but in the end you have no choice, as you feel that rotten you will take anything!!

The thing to remember is they wouldn't prescribe these meds if you didnt really need them. We are fortunate really as these meds were not available a few years ago. I lost a family member to lupus, just before these dmards came out.

You sound like a very determined person, so I know you will not let it beat you, but find other ways to do the things that really matter to you.

meanyjarReA

I have ReA which supposedly disappears after 6-12 months, but all I found on the internet is doom and gloom stories of how their ReA has lasted years, scared the pooh out of me! My point is, people tend to write about about things when they are really bad as they are seeking support and a venue to get things off their chest. So the stories are usually worst case-scenarios! Do bear this in mind when reading horrifying tales of a persons diagnosis and life, the ones that got off lightly probably don't post!

dreamdaisy

A thought occurred to me: if it was your child who was affected would you deny him the meds? I suspect your second opinion chap will tell you the same as the first one. It would be lovely if we could deal with this by gentle means but the fact is we cannot. This is a pernicious disease and it requires meds that have some clout. Ideally, we should be able to fix things by doing flower arranging but, honestly, that just isn't enough. Good luck for tomorrow, let us know how you get on, if you are able.

This disease does not define you - like us, you have to master the delicate art of defining it and then living with it. The essential you is still there. DD

seamonkey

Hi Kieth,
Welcome to the forums, you have found a great place but unfortunately it means you have arthritis.
I understand totally your fear of not being able to play with your child, I am 32 and i have 4 children over the years the interaction i have had with them has had to change along with my condition. I cant get on the floor any more and when we play games ( monopoly, card etc) i sit on a chair and some one passes/ moves for me. I havent been able to go swimming for months now which is something we did regularly i taught all 4 how to swim, my OH takes them now and i am sad i cant. I do different things now instead of playing active things with them, i still encourage and watch when theyre playing football etc. Your child will understand when older if there is things you can not do as he will see it every day. Mine dont question why i cant do things but accept it in a very grown up way. It has been very disappointing for me but i concentrate on how i do play with them and adaptions to use. I am however worried that i will not be able to help them when they have children of thier own, i never had help and i always wanted to offer them help.
Wishing you well,
seamonkey

keith1971

I guess being an active person it's hard to come to terms with not having the energy (or ability) to do what I once could -- fatigue is kicking my **** right now though I try to walk for 45mins to an hour a day, even with ankle pain.

Can't wait for my appointment tomorrow & further tests, then I can get to the business of attacking this disease like I should have a year ago! Fingers crossed I haven't damaged anything else & it's just my obscene middle finger that's stuck this way!

dreamdaisy

It takes time to get one's head around things - I hope you have a more positive appointment tomorrow, sometimes the rheumatologists themselves are not very good at explaining what is going on. The best of luck and if you can let us know what he says and how you get on. People on here are interested, do care and do understand. DD

keith1971

Thanks!

Yes, I'll be sure to let you know what happens - hopefully it'll be a more positive experience than dealing with the previous rheumatologist who clearly didn't explain the potential gravity of the situation to me properly first time around!

:roll:

Rashine

Hi Keith.
Thought I ought to say hi here too
I had my son just before my diagnosis was confirmed then a daughter two years later and worried that I would never be able to do ordinary mum things, or continue my career. But althougth there are times when somethings are very hard, there is plenty I can still do and I didn't miss out any of their activities I just couldn't sit down for ring-a-ring-a-roses which is not the end of the world although for a time I thought it was!

I'd definatley follow the advice of the Rhumey (at leat until you feel you know the disease beter), also if your not taking any painkillers it may be worth considering ibruprofen or another anti inflamitory as it will help with swelling and mobility at least a bit.

Hope you get good advice at you app. and don't worry, it doesn't help (easier said than done!)

dreamdaisy

It's just gone 3pm - I wonder if you are still waiting, in or been done? I have been thinking about you. It's a big day, yes? DD

keith1971

Hey,

Just got back from the hospital -- come home with sulphasalazine & diclofenac (Voltarol) -- after a physical exam & discussion the rheumy believes I have a mild to moderate case of psoriatic arthritis.

I had XRays done of both hands & feet/ankles, where I'm having most pain right now as well as bloods taken for a full examination -- very interested to see where my inflammatory markers are at right now (fingers cross they are low).

Have a follow-up appointment next Thursday to get results back & further discuss treatment. Starting on the sulphasalazine tomorrow morning.

All in all the experience was about 100 times more positive than my previous experience with first rheumatology department. All I'd say is that if you have private medical health cover, use it!

Orange wee here I come!

:P

dreamdaisy

I have been on sulph for years and don't notice the orange wee. I do explain it to nurses when I have to give urine samples as I became very fed up with the lectures about increasing my fluid intake. It is just as powerful as meth in some ways, so treat it with respect! I take it you will be building slowly? I hope it suits you and that it begins to help. For me I know it keeps the P bit of my PA at bay until I flare, but that is not that often now which is a good thing.

I have an excellent rheumatologist on the NHS: like all these things it comes down to individuals, personalities and interest in patients. My first rheumatologist was dismissive, arrogant, determined I wasn't his pigeon. He lost that bet, with some style, but I gave up with him as he couldn't be told anything, he would not listen and was not interested in my views (whihc I thought mattered, being on the sharp end as it were). My second (and current) one is the complete opposite. I have had excellent service from my rheumatology department for years now, I am very lucky indeed, I realise that.

Good luck and welcome aboard the HMS YWC (yellow wee club!) DD

suzygirl

Thats great you saw a good rheumy, they are worth their weight in gold. Would he transfer you to his NHS list??

I am taking sulfalasine, I am on my third week, no improvement yet. As to the orange wee, :shock:

keith1971

Hey again,

The guy I saw today kinda restored my faith, perhaps I just had back luck with the other hospital -- another person on this forum actually goes to the same place & has similar complaints!! When I do go back to the NHS it'll definitely be at a different hospital & thanks for the suggestion about asking the new rheumy about his NHS list Suzygirl, hadn't thought about that but it's a great idea.

Yes Daisy, building slowly - one a day all the way up to four a day over the next month presuming my bowels don't explode & I don't start projectile vomiting in the meantime!

Wish me luck for tomorrow morning when I pop the first one!

x

dreamdaisy

I always assume that the side effects won't happen. So far so good. I have not had any trouble with either the sulph or the meth, I do have some problems with the steroids and humira (I am much further down the drugs route than you and have never refused anything which could help - a lifetime of taking meds has stood me in good stead for this latest but of bother). I wish you well for the first swallow - I am sure it will all be fine. Lucozade wee here we come! DD

julie47

Morning keith
Glad the rhummy appointment went well and you came away feeling more positive.
You taken you pill yet this morning? good luck.

Hope the new med kicks in shortly and good luck with next weeks follow up.
Have a good weekend
Juliepf x

keith1971

Good morning ladies,

Popped my first tab about an hour ago - a little paranoid about what'll now happen but I'm sure that will calm down presuming everything goes okay!



Have a great weekend also & thanks again for all the kind words of support & advice, has helped me immeasurably.

(still waiting for my first orange pee pee )

x