Newly diagnosed

Welcome Greetings and Introductions
1

Hi there,
I have just recently been diagnosed with PsA though it began about 3 months ago. It all stated in just my wrists and fingers but has moved at a rapid pace. Now it is also in my elbows, knees, ankles and toes, with a couple of my fingers and toes always being swollen, I haven’t been able to straighten one finger for the last 2 months.

I have been coping, at least I thought I was, since I was diagnosed but am now struggling big time. Every week I feel like my body is deteriorating, some days I struggle to even lift my blanket off me in the morning. Every day I live in pain and all I wish for is just one day to feel normal. I’m only 24 years old, and knowing that I have to live with this for the rest of my life scares the crap out of me. I feel embarrassed ehen I can’t do some of the simplest things in life, like opening a door or cutting my food, even walking is a struggle. And it’s not feeling embarrassed as in what people see, but I’m embarrassed of myself.

I’m still to start treatment, which I will on Thursday, and I know then that things should get better but I still can’t help freaking out. I’m currently taking anti-inflamatories and krill oil as well as exercising (swimming, walking and cycling) and starting to eat better.

I just would love to know any advice people could give me and how they first coped when diagnosed and how they are coping now. most importantly I would love to hear of any stories of people who live as normal a life as they can with PsA.

Thanks,
Jana

2

Welcome to the group! You can check out my story in the newbie section. It takes time to learn to cope, and there will be setbacks along the way. Starting treatment will get you feeling better, but just keep in mind that it takes time some of the meds to kick in, and some won’t be the right one for you.

3

Hi Jana! Sorry to hear that you have PsA at such a young age. I was lucky to not get it until into my 50s (although like most of us there were aches and pains throughout my life that came and went).

I can tell you there is hope. You said you didn't start treatment yet. I've been on a biologic for almost 7 months now (Enbrel) and it has made a world of difference.

I've relieved some of my pain with ice packs and a heating pad. I tried a lot of the natural remedies but none of them worked. I do take 100mg of CoQ10 and 2000 mg of ultimate omega fish oil. Those two things help control my high blood pressure and cholesterol, and I think they also have a subtle impact on my PsA symptoms. OTC pain pills are almost worthless for me, and other than a couple of prednisone tapers I haven't had any pain pills--narcotics or other. Prednisone made me feel really good the couple times I took it, but I'm leery of it after hearing it's got some major drawbacks.

I get you about being embarrassed--it's a huge disappointment to find out what you have is a disease that could potentially do some major damage and prevent you from living the life you had expected. I can't imagine how awful that must feel as a 24-year old. Even at 61, it's depressing--my mom will be 90 next month and sometimes I think she's in better shape than me! I'm currently dealing with back pain that's got me down (permanent damage which may or may not be from PsA)--she has a perfect back. While I'm laying around trying to figure out what to do about my pain, she goes shopping and to the casino! I kid you not, she has offered to come to our house and help with the housework!

But, again, there is hope for you to feel better. I didn't want to take a lot of meds and my doctors know that, so Enbrel is the only thing I take.

Good luck and let us know how you are doing.

4

Oh honey,

Listen to your body... just you and your body.. find the best rheumatologist that will listen, and I mean listen to you. That will be the key to your success.

I offer you to message me.. if you have any speific questions...

Huggs to u...

Karen

5

Jana hi,

I'm new to this PsA stuff too, I had my first big flare in May and was diagnosed in November when the second big (the biggest) flare hit. I know you are looking for advice from people who found a way to cope with it, but I thought maybe you would like to know that there are young people, just like you, learning to cope with it as well - young and confused that is. I am 26 and I totally understand what you mean by being embarassed and upset with yourself. I always thought this was something that happened to "old" people, and was shocked to find out that there are many young people out there just like me - even younger. Being young with this diagnosis and the thought of having it for life - especially when it feels like it's getting worse - is definitely hard. Actually, it's terrifying! I was diagnosed only 3 months ago, and I spent most of that time quite depressed.

My main areas with problems is different than yours. My biggest problem is my SI joint. So I'm imagining what you feel when it comes to being upset with the things that you can't do is different from mine. I get really embarassed when I start limping! Just before my diagnosis, when I was waiting for the day of my appointment with the rheumy, I was trying to climb the stairs to my apartment (I live on the 4th floor). And at one point I gave up and started limping and making weird noises because I thought I was alone. Then, a girl I never saw before climbed the stairs behind me, caught up with me, looked at me with an "oh, honey" look and said "can I help you"? And I said "absolutely not!". I was almost upset at her for seeing me like that. Turns out she is my new neighbor, and everytime I remember that moment I want to go knock on her door and say "I'm fine now, you see, I'm fine now! I'm not always limping" :D

Like I said, I spent most of the time after my dx depressed. And in fear. Thinking about how worse it could get. Wondering where my luck ended. Then, as I began understanding what I was up against, I began feeling more confident. More in control - maybe not of my body, but of my emotions. So I have PsA. There's nothing I can do that's going to change that. The only thing I can do is find ways around it so I can live a normal life. And you know, you learn to cope in a very short time, shorter than you might think. And I believe once you start your treatment you will be much better in no time. A lot of people here seem to have gotten better. Why wouldn't we? :)

6

Hi Jana, Wow, do I know how you feel. My main problems are in my hands and wrists. I to have struggled with opening doors, holding a tooth brush, pulling a blanket on or off and washing my hair. It got pretty bad. I was taking 1800 mg of Ibuprofen a day along with having taken mtx, sulfasalizine, plaquenil and leflunomide. Some side effects made me a zombie, some made my hair fall out or just made me sleepy. Trying to get through a day at work was seeming impossible but I got through it.

Take it one step at a time. Get yourself a day planner....Keep track of how you are feeling and your symptoms from meds and flare ups. It will pay off because it's likely it will take some time before you find meds that help you long term. Take it easy on yourself...esp when it comes to trying to do things with our hands. Buy an electric can opener, and or jar opener, don't try to carry more than you can handle, take your time completing tasks etc.

I also have trouble with my feet, elbows and shoulders. It all started in one finger. That finger does not straighten anymore because in the beginning I was misdiagnosed. That being said, you've got your diagnosis so you're on track to find a life of less pain and inflammation. After so many meds, I've ended up on Enbrel. I still have flare ups but only about 10 % of pain compared to before.

Good for you with the exercise ! I used to jog and had to quit. Now I have to do low impact exercise also. I'm thinking of hitting the pool once a week.

Hang in there....things will get better :) it just takes some time.

7

Welcome, Jana!

It is scary at first, but you seem to be on the right path. Starting treatment sooner rather than later can make a huge difference in the long run. You've already gotten some sage words of advice.

We're guessing I've had PsA since I was 4. I had surgeries on my knees my junior and senior years of high school and was "the gimp" throughout high school because of my leg issues. What helped was having an amazing group of friend who didn't care if I always had a leg brace or two, or carpal tunnel splints on...or waiting up for me as I limped along.

One of the best things I ever did was put things in place in my life to make life easier. I never thought I'd love a jar opener or slip-on shoes so much. Proper footwear can make a huge difference. I was reluctant to use a cane, crutches or a wheelchair, but have a purple paisley cane that gets LOTS of compliments, duct-tape decorated crutches, and duct-tape and bumper sticker decorated wheelchair that my kids (especially my teens!) argue over riding in when we're at the Science Center or aquarium and I get up to stretch for a couple minutes. I appreciate every moment of feeling well - I went from needing mobility devices to hiking the White Mountains of New Hampshire in a matter of six months at once point. PsA meds can do amazing things!

It's great that you've made positive changes in your life while you await treatment. Please be gentle with yourself.

8

hey there!

I am a 28 year old who was diagnosed PsA about year ago. i feel like the mental adjustment part of the BEAST that is this disease or any other life changing chronic condition is not emphasized enough.

it is easy(er) i think to talk about treatments and side effects and good doctors vs bad doctors, but much harder to talk about BEING NICE TO YOURSELF.

and taking things sloooooowly.

i personally have had such a hard time with this part!!! it is especially difficult when I start comparing my new "diseased" life to the way things were before PsA. (being a ski bum, or a super athletic person, eating whatever i wanted, getting drunk with friends, not having to think at all about planning my life etc.)

it is great to read that you are able to swim and bike and get some movement into your joints. for me I have had to be flexible with the athletic stuff as some days the best i can do is get myself into a sauna (that my gym has one of these has been invaluable!) or on some days do nothing at all!

so yea. know you are not alone! and that there are other young people who have this BEAST and that we are all just doing the best we can with it, just like you. one day at a time. Most non-disease twenty somethings will not be able to relate to you. I often just have to take deep breaths when friends try to give me advice IT MAKES ME CRAZY when i hear that i just need to start juicing, or taking more vitamin D, or this or that will save me from feeling totally overwhelmed and really sad about my new life.

BEING SAD AND TOTALLY OVERWHELMED IS TOTALLY NORMAL.

this is some crazy shit!

trying to be patient with yourself as you feel sad or angry or embarrassed is really key.

for me, seeing a therapist to talk through some of the mental stuff has helped ALOT!

also, the RX treatments are really scary in their own right. but once you start on a path THINGS GET BETTER. they have to list every single possible side effect that happened to everyone ever. yes the side effects can be really bad for some people, but you don't yet know how they will be for you. I wish i had learned sooner to stop googling and obsessing about the fact that i was probably going to get cancer after starting Biologics, or that Methotrexate was going to make all my hair fall out and then make me super sick and cause me to not be able to teach anymore) after starting both of these things and "minding the gap" my life has gotten MUCH BETTER, not much worse.

I did not have to quit working with children. things are hard but they are getting better!

ok. hope that was helpful. feel free to message with any questions or anything.

HEARTS!

9

Twentysomethingdavid, Lol about the obsessing over the possible SEs from biologics, because that is exactly what I did for years! I'd see the golfer or model on a TV ad telling how great they felt since taking Enbrel or Humira followed by the statement of all the horrible things like cancer, tuberculosis and even death that could occur!!! I kept saying, there's no way I'm going risk my life and take that stuff--I'd rather feel like crap and be embarrassed about psoriasis all over my body! But, I finally wised up and now I honestly don't worry a bit about getting SEs or cancer or whatever--I worry about not being able to take my Enbrel shot for some reason!

You really hit the nail on the head about calling PsA the BEAST, and it definitely is hard for people to understand what we're going through. Since I've been on Enbrel, I've tried to explain to our kids just how crappy I felt, and then I say Omg I can't imagine feeling that horrible again (even with my bad back--idk if I could have lived through this terrible back pain if I still had all my PsA symptoms). It is SCARY!!!

Jana, you are young and have lots to look forward to. Once you get on the right med(s) you will be able to live a more normal life.

10

Welcome to the group. I just wanted to say I am sorry you too have been diagnosed with PsA. I can't imagine how difficult it must be for someone so young. I am still trying to figure out all the meds and get myself square too. I keep saying "I am only 54, I shouldn't feel this bad", so it must be really tough only being in your 20's. I hope they get you started on some meds on Thursday that help. It has definitely been a trial and wait and see approach with my meds, which can get frustrating. Waiting 3 months to see if something will help when in pain is tough. Just wanted to wish you good luck on your journey to feeling better! Be kind to yourself. It's hard, but otherwise you will go crazy. Hugs!

11

Thank you everyone for taking the time to reply to me and give me words of support and courage. I don't feel so alone now and it has helped me a lot!

I have been to see my rheumatologist today and he has now 100% diagnosed me with PsA. My MRI report that I had last week shows that i have a lot of inflammation and already the start of joint damage. Luckily because we have caught it early and getting me onto medication it should hopefully mean that this will not affect me now or later on in life. I have been put on methatrexate and prednisolone (i think that's how to spell them!). Methatrexate does worry me a bit as of the side effects but as Twentysomethingdavid said they have to list all possible side effects and my rheumatologist said that though there are these side effects they are not hugely common. Surprisingly even though this medication will help me I was most upset that I could not drink anymore! And no I'm not an alcoholic, but I am 24 and like going out a couple of times a month party with my friends and a good old social drink! This part really did feel like the end of the world, which I know it sounds silly, but I thought that this stupid disease wouldn't control my life but now it seems that it is.

I am lucky to have a supportive family, who unfortunately live in NZ while I'm in Australia, but a phone call to my Dad put some perspective in my life. I can still go out with friends, yes it will be an adjustment as I'll be sober and they will be drunk, but I will adapt and things could be much worse. My rheumatologist seems to be really good too and said that if I find there is not much change in my arthritis with the methatrexate then he will start the process in March of getting me qualified to receive the government subsidy for the treatments which involve injecting myself which seems to have a higher success rate.

So for now I will keep soldiering on, I'm still struggling to come to grips with it all but I will find a way to cope. Any tips people have would be really appreciated including any diet/food that seems to work, I have told I'm on the right track with trying to exercise a little each day but being warned not to push myself. I am so happy that I have found this page to discuss this stupid disease, as it really has been helping get through the days.

12

Hi Jana, I’m really pleased to hear that your rheumy is open to move you to biologics (injected drugs) if the methotrexate isn’t working well - because of the expense, and fear of SEs, many rheumys in Aus are very reluctant to use biologics - hang onto the one you have unless you feel there is a major difference in how you and he want to treat the disease.

Also bear in mind that the Pred will make you feel better - but the stuff isn’t a good disease modifier, and if you take it for more than a few weeks (and later, once you’ve built a tolerance, days), then your body ends up with a dependence on the stuff. Try not to take it (unless you kind of have to not to lose your job or similar…) for more than a few weeks at the start, to give you a much needed break, then a few days occasionally (a month) if you really need it.

It is something that the docs do here in Aus that’s not terribly common elsewhere - for good reason. I make these comments as someone who took it at “low levels that shouldn’t be an issue” according to my a Rheumy, for 9 months. About 12gm a day, varying depending on disease activity. I got all the standard SEs - moon face, irritable, etc. but I also ended up, at the age of thirty six, with osteoporosis in my lower spine.

It is also incredibly hard to “taper” off. People use lots of nice words, but essentially, even independent of disease activity, because your body is dependant on it, tapering is actually withdrawal. 3 months of the 9 was spent in withdrawal for me. I’d prefer to give up smoking again ten times over to experiencing pred withdrawal. And to top it off, now I need 25 mg to shift a small flare - as I appear to have become resistant to it.

Ok, that’s my pred rant, I’ll stop now, you’ve heard it from me and I won’t repeat it unless you ask.

The good news is many people do well on MTX, and for many who don’t, the biologics can often bring us back to near-normal (that’s me! - rob my house, take my wallet, but to get my Humira you’ll have to pry it out of my cold dead hands… Lol!)
Good luck and make sure you continue to let us know how you go :slight_smile:

13

Welcome Jana ! I'm so sorry we had to meet this way, but I think you will find lots of friendly support and great information here. I am learning to adjust after being diagnosed 3 years ago. It is definitely a marathon and not a sprint. Take it one day at a time, be kind to yourself and learn as much as you can. This is a great place to start !

14

Hi I’m older (50) but also newly diagnosed with main problems in wrist/hand and feet! You have probably started on the methotrexate now, but just wanted to say don’t be scared by it! I was terrified and had stuff for 2-3 weeks before taking it - have had hardly any side-effects apart from headaches which have now gone since I was put on daily folic acid. Unfortunately it hasn’t helped me yet (10 weeks and counting) and my next step will be to go on a biologic sometime after my next rheumy appointment in march.

I am exhausted, In Pain, depressed but determined to see it through and find something that helps - onwards and upwards. Just for he record my sister has psa but hers is currently in remission and she is drug-free - so I guess that’s always a possibility!!