Newly diagnosed

Welcome Greetings and Introductions
1

Stopping by to introduce myself this morning...

Warning: I am finding it very difficult to be upbeat lately. Don't let me depress you. I'm normally not like this!

I was officially diagnosed with PsA last week. I'm 33 years old. Looking back, I can now see the last few years of aches and pains that I always thought were normal were actually not... but it was about 6 months after my second daughter was born that everything kicked up into something that could no longer be ignored. After my primary doc couldn't find any obvious reason for my pain and fatigue, he sent me off to meet my rheumatologist. About 8 months, labs, a few Xrays and an MRI later, here we are.

I've been on meloxicam 15mg for about a month now. It helps very little, but little is better than nothing. I'm starting to get stomach pains though and I worry it's from this. I take tylenol too. My rheumy is recommending I start on a biologic (preauthorization pending for Humira) because the majority of my pain and stiffness is in my spine and SI joints. I am hopeful, but nervous.

I'm having a difficult time, of course physically, but also mentally and emotionally. I've read that depression is fairly common, and I am on an antidepressant (and have been for several years). I have 2 small children at home, one of which has special needs, and my husband is out of work. I work full-time, and that means painful days for me - but it does keep me moving. And for now, it keeps the bills paid (mostly).

The constant pain is exhausting, and the mental fatigue is maddening. I can't remember things from one minute to the next and concentration for any prolonged period of time is near impossible. The rheumy fellow on my case said I may have "some fibromyalgia" too. Very offhanded and nonchalant. Yeah, the compassion isn't great in that office. Pain meds are very difficult to get around here. I'm not sure how else to express to my doc that I am suffering. They already make me feel like a drug seeker. However, due to my insurance, I'm stuck with them unless I can get the money to pay the higher out of network copays. I've found hot showers and heating pads help a little. Walking the dog and playing with my kids help loosen me up some too, though lately these things are getting much, much harder.

I'm hoping for improvement. I hope this negative cloud passes as I learn to deal with things a little more gracefully. If anyone has any advice, I'm all ears! If not, then I'll just wave hello and wish you all a pain-free day.

~Sia

2

Welcome to the group! It sounds as though you’re still in the gap. I was diagnosed when my second child was almost one, and it was really rough the first few years. My fatigue levels were through the roof,and my hands were so painful that even holding hands with my kids was excruciating.

My disease is under better control now,as is my fatigue. I also have a clearer picture of things, so it makes it easier to handle. My baby is turning 8 this week, so it’s been seven years since diagnosis.

In terms of pain meds, many rheumys do not prescribe them at all. There are many different NSAIDs, and some may work better for you than others. My rheumy has me on Prilosec when I’m on long term anti-inflammatories. You may want to talk to your doctor about this, to protect your stomach.

3

Sianie-

Welcome! Your description of incipient symptoms sounded very familiar to me- I had thought my disease onset was very sudden, but gradually realized that many issues I'd had in the past were likely related to this disease. It's a relief, in a way.

I took meloxicam for several months, and did develop ulcers. I am on piroxicam (a related medication), as well as pantoprazole, which is related to Prilosec/omeprazole. Those can be protective as long as they're taken on an empty stomach and get to sit for a bit and as long as the NSAIDs are taken with food. It's an interesting business, juggling all of the pills and meals. :)

I hope that you are approved for Humira soon, and that you can continue carrying what sounds like a very large load with what sounds like a lot of grace. Check out Salonpas patches for your back- they smell very strongly of mint/menthol, but are quite distracting and can be a relief.

4

Thanks for your kind responses. And thanks for the suggestion of the Salonpas patches - I will check those out!

5

Thanks for the advice, Sybil.

I've never been one to ask for help or take special "me time" - though I'm starting to see how beneficial that could be. I still feel guilty saying no to people - and I just flat out cannot say no to my kids. But some days, it's all I can do to grit my teeth and do the bare minimum my family requires. I was always the one taking care of everyone else. I suppose it'll take some adjustment to be on the other side. (and not just on my part!)

As for the Humira - I am hopeful. What I'm nervous about is the immunosuppression. With my older daughter bringing home preschool germs and my job (I work in a hospital) I really fear spending the entire winter sick, and not being able to work. Time will tell how things work out though, I guess. I'm excited to visit with you all here though. It's already nice to talk to people who get it.

~Sia

6

Sianie, the immunosuppression isn’t wall-to-wall suppression. Many of us work with the public, teach, nurse and do all kinds of things where we are exposed to bugs. And we do fine. There are even some of us who seem to catch fewer bugs while on the biologic than we used to. Then there is the occasional person who doesn’t do well. Only way to tell is to try. I think it is highly unlikely that you will spend the entire winter being ill.

Good luck with this, and let us know how it goes!

7

Seenie - that is encouraging, thank you! Fingers crossed…

8

The immunosuppressive medication doesn’t make it easier to get sick you just can’t fight it as easily. My daughter was in preschool last year and I got sick a few times. Just explain to the teacher she needs extra hand washing. My daughter’s kindergarten teacher is amazing with making sure my daughter is washing her hands well and using germx. I haven’t been sick or off my medication in over a year. Only time I’ve had to was because of sinus infections I use to get because of an injury years ago that damaged my sinus ducts.