Disease progression

General
1

Hi everyone!

Here's my story:

My symptoms started sometimes around the second half of 2014. It started as stiffness in the morning then soon after I had back pain, knee pain and swollen fingers and gradually almost all other joints started hurting. By 2015, I was so bad that some days I was unable to get out of bed. I went to see my GP who referred to a rheumy who diagnosed me with Psa and shortly after that I was put on methotrexate. Within few months after that, I started Enbrel.

My small patch of psoriasis on my elbow seems to be getting better??(not scaly anymore but still extremely itchy and the patch is getting bigger). I have had psoriasis for 10+ years now and it has only stayed on my elbows.

Looking back, just couple years ago, I was pain free and now I am on full dose of my medications+pain relievers and still have to fight my body every morning to get to work. I can feel new joints being affected(including my ribs). Of course, I have good days but only after 8 months on Enbrel, it feels like the medication is starting to lose its effect. :(

I was in an impression that the disease(inflammation) progression is slower than what I have experienced because I have heard a lot of stories where people have had symptoms for years and years before starting any medication. But I guess I am wrong. So, I just wanted to hear your feedback.

Thank you all!

2

Hi PJPsA! You were asking about disease progression, I think in two different ways. Both time before diagnosis, and how it progresses post diagnosis once meds have started, is that correct?

The answer of course is the same for both, variable. I happen to have a ridiculously short time to diagnosis, in terms of when I was concerned enough to see the doctor. That said, I've had a ton of episodes of tendinitis all over since my twenties, and wasn't diagnosed until mid-thirties. We've got lots of people on site who took a long time to be diagnosed, even after they had started seeing a doctor for joint complaints.

How does it progress after diagnosis? Variable. There is a wide range of response to treatment, as well as severity of disease.

I've been on Enbrel for just over two years. Even though I can see more damage occurring due to soft tissue damage, my swollen joint count remains low enough for my doctor to not change my treatment regimen. If you're concerned about it not working, talk to your doctor. You can ask flat out if they think the Enbrel is working, and what the evidence is, in the face of how you are feeling.

3

Hi PJPsA!

I think, too, disease progression varies from patient to patient. I had moderate psoriasis (chronic elbows, knees, scalp, and occasional inverse and random small spots that came and went) for about 33 years before I had enough PsA symptoms to be diagnosed. My PsA progressed very gradually, with little aches and pains, then fatigue, then more constant pain in many places, always a stiff, painful lower back, tendonitis in wrists, shoulders and Achilles tendons, stiff neck, crushing fatigue, stiff, sore throbbing fingers and toes, neuropathy in my feet....pitted and lifting fingernails, a couple deformed fingers and toes. I pretty much had slight swelling almost everywhere in/on my body, which my rheumy could see and feel but I didn't notice how bad it was until Enbrel made it go away! ☺

It seems to me that most victims have less of their body affected, such as a couple hugely swollen joints but with tons of extreme pain and disability. My pain was less severe but covered most of my body--I felt like I had the flu--all the time. I fought through it for several years and it continued to wear me down to where I just couldn't take it anymore. It would be interesting to hear if many others had similar, slow disease progression.

Like some others, I had weird symptoms over the years, long before I was diagnosed. My back got really stiff and sore in my 30s and I had back therapy then. I had plantar fasciitis when I was 40, and severe neck pain which I thought was from a whiplash but not sure. When I was pregnant at 38 it felt like the skin was being slowly torn from my ribs (that didn't happen during my first 3 pregnancies).

Idk, it's annoyingly interesting!

I have a bad back and feet from all the PsA damage over the years. But so far I'm lucky Enbrel has been working well for me and crossing my fingers it keeps working.

Sorry to hear Enbrel isn't helping you much, but there are several other biologics and many people have had more success with some of the others.

4

Hello PJ,

Yes, as everyone has said, time from symptoms to diagnosis is different for everyone. Also time from start of medication to relief is different. Even what level of relief you receive. It's not a cut and dry disease. I think it's very personal.

I started having knee pains when I was very young, around age 5. Then in my teens it progressed to flare like symptoms of pain and fatigue, always in my knees and feet. When I left for college I had more intense pain but it wasn't as frequent. I started seeking doctors at this point but was told I was "making up the pain". So, since I was young and discouraged, I gave up seeking help. It wasn't until I was 26 that I found a rheumy to help me. Even then he couldn't find the source of my knee pain. After 3 pregnancies (two of which miscarried causing lots of stress) I went back to the same rheumy and he diagnosed me with PsA. I am now 34. It's been a long road.

I stared Enbrel 1.3 years ago and I am JUST NOW seeing relief. I still have lots of pain in my knees and feet, so there might be other things going on. It's a never ending battle.

If you think enbrel isn't working for you, talk to your doctor. It could be that you just need more time, but I am not a doctor.