Recently diagnosed-what to do?

General
1

I have recently been diagnosed with PsA. I am 25 years old and have experienced chronic pain for over a year. It was very difficult to diagnose because I literally fell apart after a sprained ankle (left) injury. As a result, doctors looked at each injury (both wrists, R elbow and shoulder, R knee, R hip) as isolated events as they progressively got worse. I was incapacitated for the most part. I couldn't even pick up a plastic fork it was so bad. I have not been coping properly and need to work on dealing with this emotionally, as well as physically.

I have been on Sulfasalizine on and off for almost four months. Doctor is really hesitant to put me on something stronger b/c the flare ups are not as bad as they were. I got bad migraines and my stomach bloated so bad that I'm off it now for two weeks to see if it really is the Sulfa or something else. I had a year of flare ups that affected my entire body, but now it is significantly better-that is until the next time. Considering the side effects of methrotrexate and humira, he rather I take alleve and try to live with it. Right now, I have tingling in my left ankle all the way up to my knee. Some days are better some are worse. I also have lingering right wrist and shoulder pain and those areas feel weak, especially when I use them too much.

I'm soo new at all of this and dn't know what to do, so lost! Any suggestions??

2

ibu welcome to the site! I am sure you will find the information you seek and the support you need. Welcome! You may want to look at past posts to see all the good information there.

3

Ibu, welcome to the site. Are you seeing a rheumatologist? I ask, because living with it is typically not a good idea. A lot of joint damage can occur with a wait and see approach, and most doctors do early and aggressive treatment. If you look around the site, you'll see quite a few people who have had total joint replacements, some at a fairly young age. You don't know what the course of the disease will be for you. Is the doctor taking images to compare in 6 months at least? To track progress?

The tingling could be simply related to swelling, but bring it up to your dr. Also, bring up physical therapy (PT) to strengthen up areas that you have lost strength in.

4

I completely agree with Stoney. You want to hit it fast and hard and I think you are not getting proper treatment. The first year can be very agressive in terms of damage. New studies have shown better chance of remission if hit fast and hard in the beginning. Definitely see a rheumatologist. If this treatment was given by a rheumy, find a new one, or demand more aggressive treatment. There are LOTS of amazing new meds now, compared to even 15 yrs ago.

Sorry to meet you on this board, it's not fun to have this disease so young (I was dx at age 10 and am 40 now).

Stoney said:

Ibu, welcome to the site. Are you seeing a rheumatologist? I ask, because living with it is typically not a good idea. A lot of joint damage can occur with a wait and see approach, and most doctors do early and aggressive treatment. If you look around the site, you'll see quite a few people who have had total joint replacements, some at a fairly young age. You don't know what the course of the disease will be for you. Is the doctor taking images to compare in 6 months at least? To track progress?

5

Hey,

Thanks so much for getting back to me. I am seeing Dr. Markenson at HSS and I saw someone at NYU. He is seeing me after the fact and when the flare is not as bad. My last flare was like six months straight! He sees that as a sign of progress that it only last for hrs. NYU rheum took a ton of X-rays and I need to fax it over. I also have like seven MRI for diff body parts. I am doing significantly better except for the right hand and the tingling sensation, which drives me crazy! His assumption is that so far based on my history these flares are episodic and is hesitant to put me on strong meds because I am young and eventually want to get pregnant. I realize that it can flush out of my system but for now, since it is somewhat bearable, and flares can last for 12 hr at a time, he is comfortable with alleve, advil etc...I also don't have any real swelling by my joints (except for left ankle), just the tendons attached to them. Any thoughts? Should I be more active and pursue aggressive treatment? He also mentioned that these meds are not necc. preventative, so it is interesting to hear otherwise.

6

Are you OK with advil and alleve? Does it work for you? The tendon thing probably /could be enthesitis and it is a big symptom of PsA. It is often overlooked and dismissed .

He is right the drugs may not slow down the progression of,this disease. On the other hand they seem to help also. They help with my pain

. PsA is often under treated. Ask this doctor if you had RA what the treatment protocal would be. Then ask him to treat your PsA the same way good luck to you in this journey

Fear the disease not the meds.

7

Hey, sorry to hear about this, however I totally understand you. I was diagnosed when I was 19… And it’s never been the same!! My whole body feel apart just like yours, an i wasn’t diagnosed for a year as they just thought I had a tonne of injuries as I’m a ballet dancer! Just keep strong! I really don’t like medication in general. But Ive been on methotrexate for 2 yrs now an it has made me more stable, sadly there is still pain but I guess that comes along with this condition. I’m also on sulfa an the migraines are just crazy!! Are you seeing a specialist? It’s really tricky with medication, I think the fact that we are young as well makes it even harder. Wow I ranted so much then sorry about that!! I hope you feel better very soon, at least you can talk to people hear and everyone will totally understand you, take good care, Sarah x

8

Hi ibu, it sounds like your PsA is predomintely tendon based with enthesitis as jot1 said. That’s very much the same as my PsA. I’ve had problems since my early 20s but wasn’t diagnosed til last year and then treated with MTX (methotrexate) as well as being on anti inflammatories since about 2005 prescribed by my GP.
You’ve had x-rays and MRIs, is there any signs or erosion of the joints? Because the treatment you receive will be based on what evidence the doctors have at hand.
Most rheumatologists will treat PsA aggressively but not all… just ask a lot of questions so you get a clear picture of you own condition, and the Docs long term treatment plan for you.
Taking control of your condition, learning the facts about PsA and the treatments on offer can all help with your emotional well being, and there are counsellors specifically dealing with chronic illness sufferers if you find you need help with the mental and emotional fallout from this disease.
Don’t suffer alone, we don’t all have the same experiences here, but we all understand…I’ve had great informational and emotional support from the people on here, and try to check in most days as I always feel I’m amoungst friends who know :slight_smile:

9

I too was diagnosed 2 months ago. My flares came on very fast and hard. I couldn’t even dress myself. Very frustrating! I had a month trial of methotrexate without improvement and just started enbrel. I feel it is so important to be your own best advocate! I am so grateful to have found a dr so fast that listens and is willing to change things up quickly. My flares effect others tendons and joints so sometimes pain is more intense. Any ideas on pain relief? I use aleeve during day while working, and pain meds at night occasionally.

10

Welcome, and thanks for sharing your story. It can be a challenge living with this disease, but its comforting knowing there are people out there that understand what you’re going thru.

It’s been 10 years since my PsA diagnosis, and I’ve had some better and worse times since. I’ve also been on most of the usual medications at one time or another to try and control the disease, with varying success rates. I’m sensitive to many of the medications too, so I’ve had some severe side effects from some, as well as stomach issues from all the NSAID’s I’ve taken over the years.

What’s worked for me at controlling my disease better than any medication has been dietary changes…although it hasn’t been by eliminating all the foods the above poster suggested.

Note, I generally dont eat much processed foods these days, and am into creating meals from scratch, using foods sourced from local farmers and ranchers instead of factory- farmed.

1.5 years ago, I came across the research of a California doctor suggesting that adding a daily vegetable juicing regime could control and calm inflammation-based auto-immune diseases by flooding the body with beneficial phytonutrients.

I juice 12-14 cups of cut up veggies/fruits (mainly veggies) daily, which makes approx 1.5 litres of juice, which I take in 3-4 doses over the course of the day.

Here’s my regular juice “base”:
4-6 large carrots
1 large apple
1 lemon
Knuckle of ginger
1-2 beets
3-4 leaves of kale
Handful of parsley
1 stalk celery

I also add from time to time, pineapple, orange, broccoli, spinach, or berries. (Depends upon seasonal availability)

It wasn’t an overnight change, but over time I found my disease symptoms GREATLY reduced (both the PsA and Psoriasis). I’ve also eliminated the need for any medications, and have been medication-free for over a year.

This regime has worked for me, better than any medication, with no harmful side effects, plus I’ve felt more “normal” than I’ve ever felt since my diagnosis. Plus, it’s leaned me out and made my skin/hair look great, and other general health improvements.

Anyhow, apologies for the epistle, but I wanted to share what’s worked for me in the hope it can work for others, even perhaps you.

Best to you!

11

Humira's side effects look worse on paper than they really are. Most people can take the biologics and never experience any side effects. I've been on enbrel for fourteen months now with no side effects to speak of except that I have no PsA symptoms or flare-ups at all.

12

It's great when diet works, but it's very hit or miss. I envy those who get better without taking medications. For the rest of us, the biologics can work amazingly well and side effects are rare.