Possibly have PsA

General
1

Hi all. I've had psoriasis since I was 4. I had a severe case (nearly my entire torso and head) that lasted months. It calmed down to just scalp, elbows and knees since then. I've had times of very few spots and others of covering the entire knee/elbow area. But that's been it.

I'm now 32 and think I have PsA. I've had pitting in my nails for many months. I noticed it but didn't really think much about it until one nail began to deform and flake away. That's when I realized it was psoriasis of the nail. While reading about it, I saw that there was a strong correlation with PsA. That was probably 3 months ago.

About a week ago, the distal joints of my index, ring and middle finger on my right hand began to ache at night. I looked it up and saw that sure enough, this was pretty indicative of PsA. I went ahead and made a rheumatologist appt even though it was not a bad case, I just wanted to see a doctor about what to expect, etc.

So, that was a week ago that I had the first signs. It has progressed pretty quickly (or at least I feel like it has). It started in my left hand, then my toes. Now it's my wrists, elbows, shoulders, ankles, knees and my low back. I throb and ache like I've been beaten all over as well as having some stabbing pains in my wrists and ankles. But then this morning just one wrist and my fingers ache - but yesterday I was also the best in the morning (more stiff but not as much pain). So I guess this is a flare up and its hopefully going away already.

I'm now looking back and thinking I've been having episodes for about 5 years. I've had severe heel pain, what I thought was a rotator cuff tear, and tendinitis on the top of my foot. I didn't see a doc for any of that. But I did see a doctor for low back pain and sciatica as well as de quervain's tenosynovitis (had cortisone injections which eliminated that). That's a lot of joint/tendon issues for an otherwise healthy person.

Of particular concern for me is the fact that I'm breastfeeding a 6 month old. All the medications sound incompatible with that. I also have a toddler. It was horrible this week trying to care for them...my husband went on a business trip the same day I started having the worst problems! I also do a lot of manual labor (farm work) and I wonder how much I will ever do again if this keeps up...

I'm seeing the rheumatologist tomorrow. I found someone through an online recommendation for PsA. For some reason I'm afraid I'm going to be brushed off since I may be in no pain at all by the time I go. I'm just looking for general advice for a first time appt. What do I ask? What should I expect? Any advice is appreciated. I guess I'm also just reaching out for emotional support. I've cried more this week than I think I have in years. :(

2

On the breastfeeding issue. . . I was diagnosed when my son was just under one. There are some medications that are fairly compatible with breastfeeding, although many doctors will tell you that they are not. They should be looked up in Dr. Hales Medications and Mothers Milk. You can contact your local La Leche League leader to help you with specific meds by looking her up at llli.org.

Just so you know, I was on plaquenil and NSAIDS for quite a few years while nursing. When I had to switch medications to MTX, which is incompatible with breastfeeding, my son was 5 1/2 years old, so we were both pretty ready to wean. It's hard to go through this with a young family. There are other's here who have gone through it as well, so you have support.

3

It's pretty common to flare within a few months after childbirth. Many first diagnoses are made during that time. Stoney gave the same resources for breastfeeding that I would have given. I continued breastfeeding my first while taking NSAID's. This was before biologics like Enbrel came on the market.

It's really hard to care for small kids with this disease. My husband and I survived it, and had no family around to help. My kids are now 15 and almost 12. Hang in there!

4

At your first visit with the Rhu, you should expect to be sent for a ton of lab work and possibly xrays. As I understand, PsA is difficult to diagnose, and it is kind of a "rule everything else out first" type of a situation. If you have autoimmune arthritis (and I am absolutely not a doctor here, so please keep this in mind) there will be an elevated level of inflammation found within one of the specific tests. I believe that the only way to really know if it is an autoimmune problem is through lab work. I also got REALLY bad several weeks after I had my daughter and I hear this is very common.

If your doctor determines you have an autoimmune form of arthritis, s/he will probably expect you to get a chest x-ray and may or may not start you on some medication at that first visit. Do not expect that your pain is going to go away with one visit, this is a process and it can take awhile to figure it all out.

Good Luck to you, I hope that you are able to find the answers you need to get better.

5

Angie- While yes, there typically is lab work that shows elevated inflammation, this is not always true. According to my blood work, I am great. But my doctor has had other patients with PsA with absolutely normal labs, so she knows that there is more to it than just numbers.

6

Yeah, idk, I'm not a doctor, but I have had several really awful diagnoses over the past decade, so from my experience, this stupid disease is really hard to diagnose.

7

Thanks for the info. I guess I wasn't expecting lab work even though I did read that there are blood tests for other forms of arthritis, so it's just a game of ruling things out. Maybe I'll be an easy case since I have the "classic" symptom of pain in the distal joint, but I did see that can be other things. Who knows!

8

Heres a list of criteria:

http://www.medicalcriteria.com/site/index.php?option=com_content&view=article&id=256%3Areupsa&catid=79%3Arheumatology&Itemid=80&lang=en

9

Funny you should mention the rotator cuff and tendonitis. About a week ago, I came to the conclusion that most of the medical problems I've experienced over the last 25 or so years may very well all have been related to auto immune issues. In 1989 I had a large portion of one lung removed after months of coughing up blood and major fatigue. At the time it was simply diagnosed as sarcoidosis, without any determination as to what caused it. I was a medical mystery at Mass. General in Boston...asked all kinds of wierd questions regarding lifestyle etc. by infectious desease guys. This condition came back again a couple years later, I escaped further surgery 'cause the surgeon said I looked fit and brochoscopy didn't look too bad. Also had chronic sinusitus for years...(completly eliminated since I started using Neilmed sinus rinse daily). Finally, in last 2 years I had shoulder pain, MRI showed partial tear of rotator cuff. One injection of cortesone took care of that, against advice of that surgeon, I declined surgery. Also have had major foot pain, MRI showed damaged bone in one toe. Got $400 orthotics which did seem to help a lot.

I think it is odd that none of my primary care physicians has ever suggested any common cause for any of these conditions. I'm liking Dave Aus's long term low dose antibiotic treatment plan & am going to run it by my PCP.

Best of luck, keep trying alternatives and continued research.

10

Oh dear it is very hard!!! My story is simlar to yours... I had some shoulder issues ( I thought it was from some bizarre Kayak injury or something). Then chronic plantar fascitis, sciatic nerve problems, 5 years later a patellar tendon flare- then psoriasis. No one ever connected it until literally one day I remember my hands hurt.


Then it progressed to all my joints in my body...I was in pain ALL the time, constantly. For about 4 months until I saw the rheumy. Finally a diagnosis of PsA and after trying naproxen, I am now on it as well as MTX and Sulphasalzine.

I TOTALLY understand the flare's settling when you see the Rheumy. With me and my PsA, my joints actually never do flare- it's more the enthesistis part of the disease ( the insertion points of tendons to bones). Once in a while they will swell a bit, but never at the appointment times.

This used to stress me out- until I realized this disease ebbs and flows. Of ANYONE they know that. My Rheumy has never really seen any "evidence" in blood work or joints, or x rays- but goes on my symptoms and feedback. So try not to worry about it too much ;)

I know it's hard- I am a mother of 3 little ones. We had to stop nursing our youngest when my health took a drastic downturn when he was 3 months old. We had to look at the "big picture" and we had to do for me what was best for the whole family. Sometimes your definition of what is best has to change... give yourself that room. Try to take one day at a time. My faith is my rock and the strength that comes from Him is my source of hope, strength, peace and focus.

Ask for help. Your friends/family might not understand but when one puts a call out- most people are more than happy to help. Meals, laundry, chores around the farm etc. If your Dr. puts you on DMARDS ( ie. methotrexate etc.) you will have to give your body time and space to adjust to this as well.

Ask about the plan- how long do you try XX meds for. How do we know they will work? Ask questions to help you understand the disease. Bring with you notes of when the symptoms started ( like you did above). Bring your hubby into the appiontment to ask questions, to help you absorb the info. Take notes, lots'. Ask about side effects of the meds if they suggest putting you on. Ask about what happens if you don't respond to treatment- what is your next step?

Don't leave their until you have an action plan. They might start you with some NASAIDS ( Ie. naproxen). you have to be your own advocate unfortunately.

Wish I could help more- so often you feel so alone and SO at the mercy of this awful disease. Remember that their is an army of people who fight the same fight as you every day.

Please let us know how it goes!!!
Blessings,

11

Hello Marissa,
There is so much good advice already here so I can’t add anything really other than to stress around 50% of people do not show evidence of this disease in their blood work according to the doctors of a world renound PsA clinic in Canada. This knowledge is not always known by all rheumatology clinic staff, and as my blood tests are always termed “unremarkable” this has caused me some problems with diagnosis and maintainence of this condition. As has been said you will need to be your own advocate most of the time. Keeping a diary of your symptoms is a good way of explaining your condition and the effects it is having on your life.
The is a good book which I bought on Amazon …Psoriatic Arthritis the facts by Dafna Gladman and Vinod Chandran. Oxford University Press…it is written by 2 Doctors from the largest PsA clinic in the world and had been very helpful to me (and also my GP) and a lot of other on this site have had this book too.
Try not to get stressed about the dissappearing symptoms, this is often normal for PsA and your rheumatologist will know this and remember that stress has a big influence on auto immune conditions. Good luck :slight_smile:

12

What to ask your Rheumy when you see him? It works for me to take out a piece of paper and have it handy. Every time a question comes to mind, I write it down. On the day of the appointment, I take my concerns/questions with me for the dr. to answer. If I have a burning question, I Google it and still ask the dr. for his input to avoid self-diagnose. When the dr. answers, I then have a good idea of what they are talking about. A dr. once told my mom that I was a smart girl. Not! I just prepare myself before I see them. Here is a possible guide to help you prepare.

http://www.mayoclinic.com/health/psoriatic-arthritis/DS00476/DSECTI...

My Rheumy and Derm both said that when a patient has Ps, the chances of PsA are high, so they kind of expect it. If you describe the symptoms as you just did, I am sure that PsA will cross their minds and they'll take further steps.

If PsA becomes a reality, don't be afraid. There are so many of us, and research is great now that gives us many options. You'll always have us as your cheering squad. I may not be able to do a split, but I enjoy watching them. (I've never done one, by the way)

13

I completely agree as my blood work is all perfectly normal but I have all the symptoms, they are still not sure if mine is PSA or seronegative RA BUT I have psoriasis so they are more leaning toward that, but my symptoms mostly mathc RA. I was back and forward for 3 months before they even started meds, and I have tried loads, I am now on Methotrexate, Sulfasalazine and enbrel and still not 100%, I also started off with a really bad consultant and I was there for 6 months being fobbed off with Fibromyalgia

I now have a brilliant team of people who look after me and a good back up of medical people means one hell of a lot and really means you are cared for

Go and see what they say, just becasue you don`t have much pain dosen`t mean they won`t see the signs x good luck



Stoney said:

Angie- While yes, there typically is lab work that shows elevated inflammation, this is not always true. According to my blood work, I am great. But my doctor has had other patients with PsA with absolutely normal labs, so she knows that there is more to it than just numbers.

14

Louise - thanks for mentioning the diary. I had planned to start one when the symptoms first started escalating. I still haven't done it, but that's top on my to-do list! I plan to track food, major activities, stressful events (perhaps Thanksgiving caused all of this...it was my first year organizing the whole meal for 30 people!) and temperature. We are having a big cold snap here.

Gelita and Cocoloco - I've never been one to be very organized about seeing a doctor, mostly because I've gone for rather simple things. But this time I have a written history of the things that I feel are relevant plus a few other odd ball health things (gall bladder removal and heart palpitations) that the doc might think are important. I will also bring paper for notes.

I'm sooo much better today. It's a relief. Just my low back and the distal joints on my hands and feet. It more feels like I've had a hard day hauling hay than before when I could only imagine that's what it feels like to go bungee jumping jumping but forgetting the cord and breaking every joint in your body!!!

I'll report back with what the doc says today!

15

Speaking of a diary, this year I started a diary, in which I write my symptoms, yell, complaints. and log my daily blessings, speaking to myself.

Psychologically speaking, it has helped me to "get it over" the talking about lack of health and diseases with family and friends, and complaining about it all the time. Now, I have many other subjects I can talk to them about.

It's interesting to see how my handwriting changes depending on my health that day.

I fully encourage it. It has helped my mood; made me more positive.

16

I heard a dr. say that for a PsA diagnosis, you must be RA negative.

17

Well, saw the doc. I went in with a positive view of her because the family I dropped my toddler off with for the appointment happened to ask who I was seeing. They lit up when I said it was Dr. Bunch. And I did really like her.

She said that all signs point to psoriatic arthritis. She said she doesn't feel the need to go through a bunch of diagnostic tests but would rather focus energy on dealing with the treatment. I did get a blood draw just to see as well as getting a ton of back x-rays since my SI joints were sore (I didn't even know what those were but when she tapped right there - WOWZERS!)

The doc is hopeful that I have a mild case - especially since my psoriasis has been mild since the initial severe case and I haven't had any arthritis symptoms until 30 years later. And the flare was basically over. She did make it sound like the fingers and toes could be chronic at least at a level of "annoying" but hopefully not terribly painful.

So, I got a prescription for prednisone to take during a flare up. She said if I just have them a few times a year, I should be fine with that. But if they get more frequent or last longer than a few days, something needs to change. I'll see her again in 4 months to check in if I don't need to see her sooner because of worsening symptoms.

Whew. I can't tell you if I'm relieved or more freaked out by having her confirm PsA.

18

After my initial upset, I realized that the only way to get proper treatment was with an appropriate diagnosis. Treatment of inflammatory arthritis has gotten very aggressive in the last number of years, with the goal being to avoid/minimize joint damage as much as possible. Hopefully this treatment plan will work for you.

For me, I was put on just anti-inflammatories to begin with, but after about 9 months the fatigue was way too great, and it wasn't controlling the inflammation. I'm progressing slowly according to my doctor, which is good. I was diagnosed 5 years ago, and just got put on a second DMARD last spring. Some people need much more aggressive treatment.

19

Diagnosing is half the battle. Congratulations! There is a peace of mind just knowing what's wrong with our body. (It took me years to diagnose) You are half way there. Just be patient while your dr. gets you a treatment that is best for you. =) Well done!