Where have you all been the last two years of my life?

Welcome Greetings and Introductions
1

Hi -

I'm so excited and relieved to have found this forum...I have felt so alone since my diagnosis almost two years ago!

My story:

I'm 39, have PsA and P. P started about 15 years ago, moderate, plaq. I had seen a derm for it for about 12 years, changing meds over and over. None of them work, but since I dont have much, and I keep it hidden, I have lived fine with it. Never once did my derm mention that there was a disease called PsA and that I should keep the symptoms in mind...

So about 4 years ago, I had what I thought a back injury that wouldn''t completely heal. Some days it would hurt, some days it wouldn't. I saw a chiro for 2 years until the pain in my SI joints was too much to handle. I also was "spraining" my ankle and fingers way more often than any other dressage rider I knew. Every ache and pain I explained away as a "riding injury".

I finally asked for a referral to a spine specialist and was sure I was going to need surgery for my "injury." That specialist was a genius...after ordering extensive MRIs, he saw the beginning of arthritis in my low back and SI joints. Knowing that I also had P, he immediately sent me to a Rheumy, who has been treating me since.

Have been on plaquenil and meloxicam for almost 2 years now. We tried Sulfasalazine once for a month, but that poison gave me so many side affects, including Steven Johnsons syndrome. So DMARDS are out. We've been talking a lot about Enbrel, and my insurance cleared me for it in June. I've been too scared to start it, until this weekend when I had my worst flare yet. It is now in my elbows and neck, I can hardly turn my head. So I have my nurse appt next Tuesday to learn how to use it, and will start soon after. At this point I just need some relief!

My biggest, driving force to feel better is my family, and my horse. I own and show my horse pretty competitively. I train twice a week, and ride no matter how I feel. What PsA has taken away, riding gives me back: strength, power, grace, stamina. Every time I ride I completely forget that I have it, it's an incredible blessing.

2

Welcome to the group Kestrel! You’ll find a lot of great support here, and I’m glad you’re starting better treatment.

3

Thank you Stoney!

4

We’re glad you found us, but sorry you’ve joined the PsA club. Let us know if there’s any way that we can help.

Most of us totally understand the fear of biologic drugs. I’m not saying you shouldn’t be scared of the drugs, but I do think you need to be more scared of the disease. In its aggressive mode, it can do considerable damage very quickly. I think you are wise to protect your joints and mobility by moving on to Enbrel. It has made an enormous difference to my quality of life. Good luck with it!

5

Thanks Seenie, its reassuring to hear that it has made such a difference for you. It's a scary step to take, but I'm finally at the point that I'm more scared NOT to take it..in two years it has affected so many of my joints..I can't believe it can move so quickly.

6

Welcome Kestrel! This group is wonderful. Sorry you have to be here, but you'll find lots of support and good info.

7

Thanks Marietta!

8

Welcome, Kestrel!

One of the scariest things I've done in my life was go on a biologic, but it was that or have PsA cause further irreversible damage to my body. I went from walking to a wheelchair in a matter of weeks. I was on Enbrel, and now am on Remicade and it's truly life-changing. I haven't used mobility devices in months and can even go hiking with my family. I hope you find something that works for you with minimal side effects - quality of life is really what it's all about. :)

9

wow nym! I'm so excited for you, getting your mobility back is incredible progress. I am so hopeful that Enbrel is my answer, I am so stiff and achy and noticed just today my head can only turn half of what it normally can.

10

And if Enbrel isn’t the answer, Kestrel, there are lots more arrows in your rheumatologist’s quiver!

11

True...if I don't chicken out of trying them. Fear is a big barrier for me right now.

Seenie said:

And if Enbrel isn't the answer, Kestrel, there are lots more arrows in your rheumatologist's quiver!
12

I hear you about being chicken, as do most people here. I’m not going to say that you shouldn’t be scared of these drugs, but I do think you need to be a bit more frightened of this disease. It’s a vandal and a thief: it can wreck your joints and steal your quality of life. If you want proof, look my way!

13

Hi Kestrel, and Welcome!

Wow, I can relate to a lot. I was a little p'd off that the derm doc doesn't mention PsA. Just because it's rare doesn't mean we shouldn't be aware of it. I thought I had injured my finger and so was misdiagnosed and mistreated as an injury. Then I saw a Rheumy that never diagnosed me. Finally frustrated I found another rheumy after waiting some time thinking it wasn't serious. Then last year I got the news of the PsA. I'm still trying to find meds that work and slow down the PsA.

Anyway, sorry to ramble. Glad you are here. I know I was relieved to find the group also.

14

Seenie - Thanks, am now scared enough to try the Enbrel. Am also scared of needles, but will get over it I'm sure.

Dini - Yep, isn't it strange that a derm wouldn't also ask if a P patient has any joint pain? I never would have thought the two were related until I did my own research. It's frustrating that these Drs let us go so long without a diagnosis!

Ramble on, it makes me feel so much better to hear similar stories, not because I want others to have it, but to know I'm not alone with this. I've spent so many days sucking back the tears by myself, and so irritable walking around in pain but having no one to vent to.

15

Oooohhhhh, I’m sorry to have shaken you up, but you really do need to look at the risks involved. PsA destroyed my knees(both replaced) my hips (one gone, one to go) and it has damaged my feet to the point that it is difficult for me to walk. Most of that damage was done before diagnosis (a GP who didn’t believe that zebras existed), and the rest was done compliments of a rheumatologist who thought that conservative treatment was good enough. I am now on aggressive treatment (Enbrel) and my goal is to keep myself out of a wheelchair.
We are here to listen, and we do “get it”. Pain is a terrible companion. I remember well the days when I read every post on this site in order to get my bearings, and I remember the wonderful support and advice I got right here. This is my chance to give back!

16

Seenie, no worries, you didn't shake me up...it was this latest flare where I can't move my neck that has finally convinced me to get more aggressive with treatment. My GP is conservative in treatment, and my Rheumy pretty aggressive. I've taken the conservative route for two years, and here I am with pain in new places.

I guess I had heard how damaging PsA could be, but didn't realize how much it could do until now. I am so sorry you have been through so much with this horrible disease. My joints in my toes have been starting to hurt and I've been ignoring it, perhaps I should be paying a little more attention to what my body is telling me.

I go in for my blood work tomorrow, so that the nurse has it on Tuesday for my instructional Enbrel visit. I'm praying when I pick it up from my pharmacy that my copay isn't a car payment!

17

Kestrel, I’ve been through a lot and I’ve suffered considerable damage because of PsA. In my case, though, I didn’t have the terrible pain which accompanies inflammation for most people. If I hadn’t had such a high pain threshold, I might have been diagnosed before the irrreparable damage was done.
So, in a way, you are lucky to have the pain that you do: it is a warning bell to alert you to something that’s really wrong. Listen to your body. Do what you can, while you can still avoid the damage.
Don’t fret about the needles. With the Enbrel injector, you don’t see it at all. You might as well be pushing a $500 felt-tip marker against your leg. Oh ya, a marker doesn’t sting. LOL I think of it as happy 10 second discomfort that will make me feel better all week.
Good luck with the whole project!
Seenie
PS Love your screen name!

18

LOL at "project" I'll consider this my newest project. Oh dear, I also have a high pain tolerance...I can pretty much work through all pain, but recently it's been getting worse. I'm still riding tomorrow though! If there is a day this disease hurts enough to keep me from riding, then the disease has won. Not about to happen...

I may have to consult you when I'm ready to inject...its probably the scariest part for me.

PS - thank you re: screen name...I'm an avid bird watcher :)

19

Hello and welcome to the site, sorry you are going through so much pain…love your fighting spirit and so glad you have a focus in your life that brings you so much joy x

20

Thanks Louise Hoy!