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Living with Psoriatic Arthritis (PsA)

Will this ever go away?!


#1

When I was 17 years of age I woke up one day with a random dark ring on my left foot toe I thought I had just kicked it on the side of the bed, looking back now I wish that was the case.

This was the start of many Dr Appointments/ MRI, X-Rays, blood tests and regular specialist check ups. to find out what was wrong with me. My toe had started to swell up really badly and I was struggling to walk properly and wear enclosed shoes.

There was three months of waiting for answers, I was later informed it was Psoriatic Arthritis… I have been put on a high dosage of Prednisone, Cellarbrix and Methotrexate once a week. I would feel really good and pain free until my specialist would slowly try and ween me off the tablets to see if there was any improvement. Unfortunatley not, it started to get worse and spread through to my other toe and big toe, I also started to feel stiffness and pain in my hip, shoulder, collarbone, neck, and sharp pain in my left thigh which made it a struggle to walk. When i thought things couldnt get any worse, my eye suddenly flared up blood shot red and irritated. At this point i was really concerned i rang my specialist to see if it was related. i thought surely not… He informed me it was common for this to happen. I was put on special eyedrops and my medication was put right back up to where i started. This did settle it down a bit but I still suffer with eye irritation pain.

My body has been subjected to a lot of different medication and they have a lot of nasty side effects- weakened immune system- causing me to always be catching sickness and feeling unwell, liver damage risk- i have regular blood tests to monitor this.

After a year of hell and trialling all the medication and having no improvements, My specialist said it was time to introduce a next stage of treatment for me. Humira self injections in the stomache every two weeks, with 8 different injections to trial he is hoping this injection technique would bring me into remission. After my second injection I have noticed a huge difference, though i still have a sore eye and my toes cease up in pain when i try and go out walking and my mum has to come and pick me up. Or if i am just walking around the shops its always in the back of my mind wondering how much longer i have until my toes gives out and cramp.

Im 19 years old now and still trying to understand why this has happened to me, it has had such a massive impact on my life and how i go about doing simple everyday life things that once were easy. Its really hard to deal with and people my age ask me why i have this when im so young?

I would love any advice on how i can deal with this


#2

Hey breana, I’m 25 and suffering from Psa I have it in my knees my left hand and lower back and it seems to be spreading to other parts of my body and this has only been in the last 2 months. It sucks alot but it’s not the end of the world you just have to keep your head up and keep a positive attitude. Unfortunately there is no cure only treatment but remission is possible but not always the case. This is something that is a genetic diease for the most part so it can be passed down for generation to generation even from a member of the family who has no symptoms. I know it sucks and at times it’s scary. But what has worked for me is having a positive attitude and making light of it as much as you can. My motto is if you can’t laugh about it get mad about it. Meaning never let it get the best of you, always push through and keep moving forward. Hope some of this helps.


#3

My heart goes out to you young people. All that we can hope is for medical advances that lead to better treatment and maybe even cures for this disease and other autoimmune diseases. I don’t know that most people have a clue what an autoimmune disease even is, and symptoms can be hidden inside of us so people don’t understand what you’re going through. Sometimes I think even some of our doctors are sort of clueless!
Don’t give up! And do not be afraid of biologics. Enbrel made a huge improvement for me!


#4

Hello Doug, so nice of you to reply, It can be quite a struggle at first
and a lot to take in. So sorry to hear you are going through the same deal,
do you take the Humira injections? My body used to ache all over also but
as soon as i started taking the Humira fort nightly massive improvements. I
no longer have any pain apart from one toe that has been weakened through
out all of this. Meaning when i walk far distance my toe gives in and
ceases up. Though it has gotten a lot better over time and am able to get
where I need to go and when it gets to much I find taking my shoe off is
very relieving. Mentally I am coping much better and have grown a very
positive attitude towards it.

Nice to communicate with people going through the same thing!


#5

Hi there @Breana, it is rough to go through this at any age, but especially so at your age… I am pleased to hear that you are getting good results from the Humira, it is much easier to cope with this thing when you feel the medication is making a difference, but more than that, having a good response to (and being so young too) is a sign that there is a better chance for your PsA to go into full remission, will keep my fingers crossed for your continued improvement!!!

I’m fairly new to this whole thing and can barely begin to understand how such a diagnosis at a young age must feel, sometimes life can throw us some real curly things to deal with. It isn’t always easy to find people who understand even for us older ones :slight_smile: so I’m pleased you found this forum but am sorry it seems no one had replied to your first post here until Doug picked up on it last week (many thanks to @Dougk3 for doing so!!).

Do keep us up to date with your progress!! Wishing you all the best for your future!!


#6

@Breana I have not taken humira. I was put on methotrexate and it has helped with the pain. I still hurt most every day but luckily I can tolerate the level of pain i experience. PSA sucks there’s no sugar coating it, but it’s not the end of the road of life it’s just a bump in it. I really think the key to living with psa is your attitude towards it keeping a positive attitude is important. I’ve always heard a healthy mind is a healthy body. So don’t stress it to much this website seems like it has great people who are willing to share there experience and just to lend an ear. Sometimes I think it’s important to talk to people who know your pain. It can’t be hard to express yourself to people who have know idea what it’s like and it can be hard to explain. But I am more than willing to share what I know and listen to any rants or complaints that anyone needs to express. Hopefully we can all help each other. I believe licking with psa only makes us stronger. We are fighting a constant battle which makes us warriors and warriors Never give up no matter the odds. Hope things get better for you. I’ve found going on walks really helps take some of the stiffness away for a while. Hope to chat soon.

  • Doug k

#7

Hi there, I agree with everything you have said, the injections are hard
for me and I’ve kind of lost the confidence to do my own injections so I
now go to the doctors to have it done for me!

It definitely does make things difficult especially with holiday trips and
lots of walking involved.

The methotrexate I am still taking also, I used to be on a really really
high dosage for it and now I have been weened slowly off it but not
completely, I take 1 and a half at the moment.

I saw my specialist yesterday and have asked if I could try and bring it
down to one tablet to see how it goes. He doesn’t want to allow that, :frowning:
Which is a shame because I don’t like to sound ungrateful but I’m nearly 21
and I have missed out on A lot of fun nights out with friends and having a
few drinks.

How do you manage to deal with that? It kind of sucks right, and also my
specialist has confirmed he isn’t interested in taking me off the
injections any time soon. Sounds pretty permanent to me and I just so
happen to be terrified of needles!


#8

Doug’s right Breana, there’s no sugar coating it. And he’s also right in saying it’s not the end of the road. Much as we all come here if and when things are tough, there are worse things than PsA. As you know, there are always going to be times when you couldn’t care less whether there are worse things, times when you hate and resent the disease with a vengeance. And other times, as you’ve mentioned, when you feel kind of proud of how you’re coping with it and much more positive all round.

I realise how hard it must be to get a chronic disease at a young age. And I understand that you must long to go out with your friends and have a few drinks without any of the restrictions PsA brings. The challenge you have is to be yourself and live life to the full despite PsA. That is something all of us want, whatever our age but some of us have had a bit more practice because life in general has already tested us even without the disease. It seems to me that the best people I know, the most fun people, the most interesting ones, have had quite a lot to contend with & have battled their way through somehow. You will find your way, obviously you are already doing that.

Oh, and I’m also on Humira, it works well for me too. Any chance you might work at getting back to self-injecting? The reason I ask is that anything that involves taking control is a confidence boost and I’d imagine it would make holidays etc. that little bit easier too.

Don’t feel like I’m telling you to stop moaning, this is one place you can vent when you need to amongst people who get it. But I am saying that old but true thing that life is what you make it and your life will turn out just fine if you’re determined to make that happen.


#9

That is exactly right, When I do feel my lowest,I always try to think some
people have it a lot worse and are struggling with diseases much more
harmful then we are. I do seem to always bounce back to my usual happy
self. I used to go to counseling to deal with it when i first was diagnosed
with PsA, I was told to say to myself, ‘It is there, I may not like it but
i have to accept that it is there’. It doesnt seem like much but just
saying that to myself when i felt unsure really worked for me. I have been
on the Humira for 8 months and until just now i have been doing it myself,
it started to really severely hurt when i would do it. I am eventually
going to self inject again, I just thought it would be good to see if the
doctor can show me some techniques and work out what i am doing wrong? Do
you have any techniques on how I could handle this better?

I am very grateful as I have come such a long way from when this all
started, mentally and physically! though i am that typical young girl that
misses going out with friends having a few drinks, wearing some nice heels
out and about!! I tend to take two pairs of shoes when I go nice places. I
need a Cinderella night :yum:.

It is definitely making us stronger as people, and making it easier to get
through what is thrown at us. What doesnt kill us makes us stronger!
Everyone seems to have something wrong with them and this what we have!


#10

Not a truer word spoken, and a lot of wisdom there :grinning:

Good luck with getting back to self-injecting, even those little bits of self-reliance and control can help!

I’m not much use at advice on injecting though :joy:, I take Humira but use the autoinjector - so no finesse there!


#11

LOL! Me too.

Do you have the auto-injector or a syringe for your humira injections? I prefer the syringe because the needle is the skinniest thing ever and most of the time the injection doesn’t hurt at all, a gnat bite would be worse.

Ages ago someone here explained (it was tntlamb I think, he’s our official genius) that even the slimmest people have enough fat around their middle for the injections and that there is no way the needle goes anywhere near organs. I found that rather reassuring. Then someone else bragged that she had got so blasé about injecting that she does it while she’s a passenger in a car … or even in a hot tub I think, though that one doesn’t sound like a good idea! But I definitely thought ‘I want to be like that!’ I do take a look at the fluid in the syringe to make sure it’s clear and in date because that’s what the leaflet says to do. And then I just stick the needle in, basically and feel like I’ve joined the ‘we can do this!’ club.

When I started taking Mtx and was a little apprehensive I used to sing a little song while taking the tablets. It went ‘Mtx, Mtx, Mtx is better than …’ Well, it’s obvious what Mtx rhymes with. I’ll tell myself any old nonsense if it helps me get through the day!


#12

Ohhhh Sybil, I’m a bit slow… can you spell out what MTX is better than rhymes with? And just message if it’s totally inappropriate for the forum - I like to think my naietivity is lovely, rather than a terrible weakness :stuck_out_tongue_winking_eye:


#13

Hi Breana,
About painful injections…two things I learned here: make sure the alcohol is dried before you inject (IDK whose wise advice that was) and warm the med to room temp before you inject (Seenie puts it under her armpit I believe) hi, Seenie, I think that advice was from you!!! If not, I apologize! But, these two pieces of advice are on my mind every time I inject!!!


#14

Delightful naivety Jen! (Yeah, right!).


#15

Really, it took me until this morning for the penny to drop! (perhaps because it has been so long :wink:)


#16

Truly that made me laugh out loud. Thank you.:rofl:


#17

Sorry for such a long period with no traffic from me work has been keeping me busy. I have to say I’m really proud to know so many people on here that share in my struggle because you all have shown me what real strength looks like. To be dealing with psa and working through it is no small task it takes alot off will power and mental power to push thorough sometimes so don’t ever for a second think your weak or that this will get the best of you. Remember we live with this ever day and we keep getting up and moving forward and that is the definition of strength then power to push through the pain and the stress of dealing with psa. I’ve found doing odd jobs around the house when I’m home are harder than they use to be and in having to learn new ways to do them. So never feel like you can’t do something, just think of a new way to do things Like bringing to pairs of shoes for a night on the Town out.


#18

It’s really important to keep a positive attitude about PSA I feel. Making songs or jokes about the meds is good it’s that positive response that I think really helps keep us going. I always tell my wife when it’s time to take the methotrexate that I’m going to go do some meth real quick followed by some more of my other drugs of choice, she laughs and I laugh and it kinda just makes light of the situation. I’ve always been a goof and a joke and I really think that’s helped me deal with psa alot. So just stay positive and on the days your feeling down hop on here send me a message or open up a thread and I’ll be sure to respond and give y’all an ear to talk to. This is a good group of peeps. - Doug k.


#19

@breana I know I sound like a broken record with the positive attitude talk but it really is super important. Don’t let psa control your life keep going out with your friends and have fun live life. Just remember you might have to go a little slower or find new ways to do things, but don’t let psa hold you back. Let your friends know when your out if your hurting and need to take a break. Hell I do that now if I’ve bee walking for a long time I’ll tell the guys yo hold up Gramps has to take a breather or wobbles cause its in my knees. I joke about my psa alot with my buddies and they joke with me. It’s important that your friends have an idea of what your going through that way they can look out for you too. Okay this is the third message in a few minutes I’ma stop being such a chatty Cathy I promise lol. Hope everyone is doing well and to remind yourselves your warriors and warriors Never quit.


#20

Dougk3 http://www.livingwithpsoriaticarthritis.org/u/dougk3
August 19

@breana http://www.livingwithpsoriaticarthritis.org/u/breana I know I
sound like a broken record with the positive attitude talk but it really is
super important. Don’t let psa control your life keep going out with your
friends and have fun live life. Just remember you might have to go a little
slower or find new ways to do things, but don’t let psa hold you back. Let
your friends know when your out if your hurting and need to take a break.
Hell I do that now if I’ve bee walking for a long time I’ll tell the guys
yo hold up Gramps has to take a breather or wobbles cause its in my knees.
I joke about my psa alot with my buddies and they joke with me. It’s
important that your friends have an idea of what your going through that
way they can look out for you too. Okay this is the third message in a few
minutes I’ma stop being such a chatty Cathy I promise lol. Hope everyone is
doing well and to remind yourselves your warriors and warriors Never quit.

 That's a good way to look at it, I do joke     around with it with my

family and friends don’t worry hahah, I call my self an old lady also :joy:
your right you have to otherwise you mope. When I went to a concert
walking to the gate was a bit of a challenge and my friends looked out for
me and said hop on my back and gave me a piggy back so the support is
there!

Now I’ve just gone for a job interview and it’s a construction area, I
would have to wear closed in boots I don’t know how my foot would cope,
Though I don’t want that to be the reason I don’t get it! I might have to
practice wearing boots around the house?