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Psoriatic Arthritis - Just Diagnosed

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Posted 7/26/2007 3:19 PM (GMT 0)

I was just diagnosed yesterday (7/25/07) with PA.  I've suspected it for a while, but I wasn't symptomatic enough for a diagnosis until my right index finger became inflammed, over and over again. I told my rheumatologist at my first appointment that I thought I had arthritis, but I needed him to identify what kind.  He said no arthritis but that I did have fibromyalgia.  Shortly after my first appointment with him, I started having severe inflammation in my right knee and my right index finger and thumb -- sporatic inflammation that would come and go.  Luckily, my finger was inflammed on the same day as my appointment with my rheumatologist -- he took one look at it and said PA. 

I've learned to live with and around the fibromyalgia, which he says I still have.  (darnit!!)  I thought I had a pretty good grasp on things and was barrelling through despite the symptoms, etc.  Now, it's hard to tell what is fibro and was is PA since they both cause pain and fatigue. 

Needless to say, I'm terrified.  I'm going to start on methotrexate on Friday.  Knowing it's a chemo drug is just about to scare me to death.  The thought of having to tear down my immune system to treat this really scares me, including the fact that I have to feel worse to feel better.

How do you stay well while you have a suppressed immune system? 

How do you keep from catching every little cold, flu, case of strep throat, respiratory infections, etc.?  I don't want to become a hermit.

Do people wear masks when they go out in public? 

Naturally, I thought of ten thousand questions on my way home from the doctor.  I don't want to drive him nuts my first week of diagnosis.  I thought this would be the best place to get real answers from real people living with the same illness. 

Many thanks.

Posted 7/26/2007 11:01 PM (GMT 0)

Hey there kabelladonna.. welcome to the PA family... I was diagnosed in March 2005 with PA, although I had been exhibiting symptoms since October 2003.. It took a while for me to get diagnosed.. My bloodwork came back negative for RA, and I wasn't being seen by a rheumy at the time, so no one thought to look at PA.. Within 5 minutes of seeing my Rheumy, he diagnosed PA.. Oh the relief, but then the anxiety!  He put me on Enbrel.  I thought.. oh no.. not this, not for the rest of my life.. and side effects, uhm, Lymphoma?  Seriously?  I have 3 young kids, so I figured I'd just be sick all the time.. and I'm in the military, constantly getting shots for this thing or the other.. But you know what?  It hasn't been that way.  Luckily, the only thing I did get was infections... I get a bladder infection like once a month.. but I am on a maintenance plan of anti-biotics to help with that..

It is scary at first going on new meds.. especially when they are like MTX and the different biologics, but the benefits GREATLY outweigh the negatives, I promise!  Hang in there, we'll get you through this. 

No, you don't have to wear a mask.. I would suggest good hand washing habits though.. Even think about carrying some hand sanitizer with you (if you don't already).. that will help to ward off some of the different bugs and viruses out there..

Take good care and let us know how you are doing!

Posted 8/2/2007 5:08 AM (GMT 0)
Hi Kallabelladonna...what a beautiful name! It's so singable and lyrical! I love it!

I have PA and RA and a host of other fun things. I've really only had two problem side effects of methotrexate. I usually get very tired after taking it. I tried working up to my dosage which is 15-17 mg. once during the week. It was always the same for me. I was tired when I spread out the dosage and just as tired when I took all 6 pills at once. So, I take them all on Sunday afternoon and sleep all afternoon. I pair it with something I like to do on Sunday afternoon. I also am on Remicade and I get mouth sores the closer I get to the day of the infusion. I've talked to other people who experience the same thing. Some thing the mouth irritations come from the mtx., others think they come from the Remicade. Who comes? Doc said to take an additional Folic Acid table to see if that helped and sometimes it does. But, let me reiterate...good, clean handwashing is definitely a MUST!!! It will truly keep you from picking up extra illnesses and it you're able (I know some people are not able), get a flu shot in October. So far, my rheumy has insisted and I've been very grateful. I didn't mean to write a book but it's been a good day and I'm feeling pretty good!!!! So, everybody take really good care of yourselves!!!
Posted 8/2/2007 7:36 AM (GMT 0)
Hi Kabelladonna. I have Ankylsoing Spondylitis, Crohn's Disease, Psoriasis and Hashimoto's Thyroiditis. I'm also expecting to have Fibromyalgia added to the list soon.

There is a family of arthritic conditions called Spondyloarthritis. Psoriatic Arthritis is one of them. Others are Reactive Arthritis, Ankylosing Spondylitis, Undifferentiated Spondylitis, Juvenille Spondylitis, Enteropathic Enteritis, and so on. All of these present similarly and pose similar risks in terms of disease progression and are essentially treated the same.

I am currently using Humira every week becaue the normal dose every two weeks was just not enough. We know that we need to add an additional immunosuppressant, but I've refused MTX because I'd like to get pregnany soon. For now, I'm taking pred, but that's a low dose for a short period. By Sept I'll either be on Imuran or 6MP.

The Spondylitis Association of America has great articles about PA and I'd suggest you do some reading there. I've tried, but can't link this page with an active link. You'll have to copy and paste it into your browser window.

http://www.spondylitis.org/about/psoriatic.aspx

I also have a post up here about early Dx of the Spondyloarthris group. It might be worth it for you to read it and see where you might fit in. It gives flowcharts and decision trees along with probability charts based on symptom groups.

The only problem that I've had after beginning these meds is a few run ins with sinus infections. Here, I will have to admit that those were most likely caused by pre-existing sinus problems that I failed to stay on top of. If I had taken care of them, they might not have gotten so badly infected. Other than that, I've had a cold here or there, but nothing serious to worry about. I even travel on the NYC subway and don't worry about catching anything. I am however very careful about handwashing. I do not touch my face without washing my hands ever.

I've heard that the MTX pills can be rough on your stomach and so many choose to use the injection, but everyone reacts to this differently. You'll have to see how it goes. Usually, the Docs also script or at least suggest that you take additional Folic Acid too. That's important. It can help to combat side effects like drowsiness and hair loss. Also, these side effets tend to fade once you adjust to the med.

I hope this brings you quick relief.

Posted 8/2/2007 3:21 PM (GMT 0)
Hi Kabelladonna,

I'm a nurse so I'm always suppounded by germs including drug resistant bacterial infections.

Handwashing is the most important thing you can do to prevent infection. Also get an annual flu shot and ask your PMD about a pneumonia vaccine.

Hope you are feeling better soon. As scary as this all seems at least you have your diagnosis and can now receive proper treatment.

Mary
Posted 8/10/2007 4:05 AM (GMT 0)
I've had a nail fungus for a few months in my middle finger and now have developed a swollen red finger below the cuticle. After 2 antibiotics from my Dr. + 1 from the dermotologist, she is sending me to a rheumatologist (app.t next week)for psoriatic arthritis. I've had psoriasis on my elbow and a few other spots for 5+ years. I don't understand what this is- do you think it is PA? Is that serious? No one I know seems to know including my brother in-law Ear Nose throat DR. Thaks for any info.

Posted 8/11/2007 2:36 PM (GMT 0)
Hey there DNG.. do you have nail piting? Meaning, does it look like someone took a pin and put little pin hole dents in your nails? Do you have swollen digits, your fingers and toes? Do they have a sausage like appearance? Hang in there and let us know how you are doing
Posted 8/11/2007 6:38 PM (GMT 0)
No nail piting but the same finger that is swollen has had nail fungus for a few months. Both conditions are only on this 1 finger and may not be related. The swelling on the finger is sausage like at the tip of the finger and around the nail. It's feels strange to have something that doesn't clear up easily. It also feels good to talk to others who may know something about it. Thanks!
Posted 8/11/2007 9:35 PM (GMT 0)
The reason why I ask about the sausage like appearance is 'cause one of the main symptoms of psoriatic arthritis is Dactylitis.. and that's when the whole digit gets swollen and takes on a "sausage like appearance".. Do you have any pain or swelling in the joints? Or any of your joints?
Posted 8/12/2007 5:28 PM (GMT 0)

No joint sweling at all.

DNG

Posted 8/12/2007 10:23 PM (GMT 0)
Hhhmm.. let us know what the rheumy says.. it doesn't sound much like psoriatic arthritis to me.. since you don't have any of the joint swelling and/or pain.. but I'm not a doctor.. I just know what I've been through.. Good luck to you.. When is your appt? It's soon, right?
Posted 8/12/2007 10:52 PM (GMT 0)
Friday-thanks for your help too. I'll let you know.

Posted 8/13/2007 6:55 PM (GMT 0)
I don't have swelling joints either but i have p/a i had psoriasis for 26 years but was just at rumy and i do have p/a and iam 51 now DEb
Posted 8/13/2007 10:52 PM (GMT 0)
Hey there Deb.. this has my interest really peaked.. How did your rheumy diagnose PA with no pain or swelling? My rheumy said that PA doesn't show up in bloodwork, and through the dactylitis and nail piting is how I got diagnosed... Is amazing how each doc is so different.. Did your rheumy do x-rays?
Posted 8/14/2007 1:06 AM (GMT 0)
He did blood work that was 1300.00 and also he x-rayed my feet and hips and thats what he came up with he wanted me to start remicade but husband had to go on disability threw work and our insurance ended he had me on metrate or how ever you spell it and i go so fatigue and hair was falling out so bad.DEB
Posted 8/18/2007 12:49 PM (GMT 0)
Hey DNG... how did your appt with your rheumy go?
Posted 10/10/2007 9:03 PM (GMT 0)

I know this thread is a couple of months old, but just wondering if anyone here has ever tried changing their diet as a way to control their PA.  I was diagnosed over 11 years ago.  (First by regular doctor, then by Rheumatologist, then by 2nd opinion Rheumy.)  I didn't realize how many people have PA until I found this website.  I'm a walking, talking advertisement for dietary intervention rather than medication.

Anyone else ever try?

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