Feeling confused

Welcome Greetings and Introductions
1

Hi I have been newly diagnosed with Psa even though I have been suffering for 20 years but never sought help (silly me). I finally got referred to a rheumatologist which was a 4 hour drive from where I live, she gave me a couple of pamphlets and said to call a number in the pamphlet if I need support etc. I had no questions while I was there as I wasn’t expecting to be diagnosed with anything as what I’m usually used to, so it was a bit of a surprise and my brain seized! But on my 4 hour journey home I had a few questions arise. If anyone can help me that would be great as it is long waiting lists to get into even GPs in my area let alone the specialists.

Im very lucky and am still in the very early stages of the disease (not only am I slow but so is my disease!) so I’m wondering if you take the anti inflammatories every day even when you aren’t suffering a flare? Or do you only take them during flares?

Also does treating the psoriasis help keep the arthritis at bay also or are the symptoms not fully related?

Do you guys keep away from gluten? If so does that help?

Are your eyes really sensitive to sunlight and car headlights at night? My eyes go into meltdown first thing in the morning which is difficult when I live in Australia. I avoid driving at night at all costs

Sorry if my questions are primitive. I’m just trying to wrap my head around the basics for now

2

Hello Peta, no your questions aren't primitive. You are at the beginning of a steep learning curve!

I want to respond in reverse order because what leapt out at me is your comments about your eye-sight. I've been complaining of exactly the same issues for a couple of years or more and in the last twelve months have also avoided driving at night. I've had my eyes checked and checked and they are always fine. Then I had a breakthrough moment. Back in March I was diagnosed with secondary fibromyalgia syndrome. Something like a quarter to a third of PsA patients have or will develop secondary FMS. And guess what? Because it is a sensitisation disorder, problems with sunlight/lighting/lights can be a symptom of FMS. Now I'm not suggesting you have FMS but for me this made total sense of what I was experiencing. Here is what my FMS book says "... this sensitivity may be caused by a connection between light sensitivity and the hypothalamus. Many people with FMS and chronic myofascial pain often have problems driving at night. The lights of oncoming cars can really distress us. This may be due to altered reactivity of the eye's pupils. This is under neurotransmitter control...." (Starlanyl & Copeland, Fibromyalgia & Chronic Myofascial Pain A Survival Manual)

Regarding going gluten free, there are lots of past discussions on this that you can search for. Some people have found it has helped them others less so. There is no "one size fits all" answer on this. I've currently cut out starchy carbs, processed food and added sugar from my diet as I need to lose weight. I feel VERY well but I attribute it to eating better rather than having excluded gluten.

I think research shows there is no correlation between severity of skin disease and severity of joint disease but no, treating the skin disease does not control the joint disease. Hopefully effective treatment will work on both aspects but for me my biologic hasn't helped my skin so that is managed with topicals. It's a compromise I can live with to have the joint disease control.

On the anti-inflammatories I'm not going to wade in simply because I don't know. Personally I've never found them very helpful.

Hope this helps and kicks off some good replies for you. JulesG

3

Welcome to our community, Peta. Not "silly you" for suffering for twenty years: I, too, suffered for twenty years. In my case, every time I mentioned body aches and stiffness and joint pain and fatigue and and and to my doctor, she blew it off as menopause, needing to exercise more, needing to lose weight, eat properly blah blah blah. All my own fault, you see, so I soldiered on. You are very fortunate to have got away with this for so long without (I assume) having major joint damage. Congratulate yourself for that.

Yes, Peta, a four hour drive is such good exercise for the brain! Fortunately, we aren't four hours away -- just a few clicks of the mouse. Your questions aren't primitive at all: they are logical questions for someone just starting on their PsA journey.

Like Jules, I'll start at the top: eyes. Many of us suffer from dry and sensitive eyes, it's all part of the PsA picture. And while we're at it, I'll mention that PsA isn't "just" a disease of the skin and joints: it is systemic, and can affect almost any system you want to name. I suffer terrible depression when my disease is out of control, as well as an irritable bowel. And judging by what happened last year when I was between biologics, with active PsA, my blood pressure is affected too. So eyes, yes. Here's something for you from Newbies'.

As for anti-inflammatories, when we take them depends on lots of things. I had been on them full time for fifteen years before I was diagnosed. Somehow, my doctor was fine with that ... shame on her. I continued after my diagnosis, but when I went on the biologic my rheumatologists encouraged me to cut my dose down, which I did. Long term anti-inflammatory use isn't a good thing. Fortunately, I'm feeling well enough these days to be taking small doses only when I really need them.

As for gluten, some people find that eliminating it helps, some don't. Like Jules, I feel better when I cut back on carbohydrates and sugar in general. Here's an interesting article for you. Other people find that avoiding nightshades and red meat helps. Look up member Dini in the members section: she's had great luck with diet. But remember: symptom control is not the same as disease control.

Finally, you're right in the middle of what we call "The Gap" around here. It's a place that all of us have been. We're glad that you found us, Peta, and we hope that you are as well. It's great to see you starting a conversation already.

4

Thank you so much for your responses! I was finding it hard to find any information before that wasn’t just the basic stuff, so much great information on here. Thank you for your supportive words too, it’s hard to find people that don’t just tell you “you’ll be alright”.

My original doctor just played me off for years even though my CRP was mildly raised for years on end. She also dismissed both my children’s acid reflux where my three year old lost three teeth and 5 fillings, so she is a doctor of the past for me.

I actually did gluten, dairy and red meat free at beginning of year while I was breast feeding my baby because of her gut problems, weight shed off me but that was also when my debilitating flares began too. I’m willing to give it a try again to see what happens. I’ve read red meat can fuel cancer so I’ll be cutting back on that now too!

That is very interesting about the fibromyalgia and photosensitivity. I will look into that too. That would have been hard to differentiate from psa for you because of overlap of symptoms.

I too have suffered depression my entire life. The more I research the more symptoms I connect with so its bringing me out of the denial. My hla b27 was negative so being a scientist my brain automatically won’t allow me to fully accept this is what I have even though I know that not everyone is positive.

I look forward to doing more research and being able to join in conversations with you guys. What a great community you have!!!

5

I'm HLAB27 negative too.

Have you found the Book Reviews section? The book Seenie recommends in there is excellent - most of us think the best - patient orientated book on PsA. If you want a bit more science, the authors together with a dermatologist (Cheryl Rosen) puplished an updated version in 2014 aimed at medical professionals. The ISBN no. is 978-0-19-969209-5. Both versions, are I believe available as Kindle e-books as well as small paperbacks from all the usual book suppliers.

We look forward to having you join our conversation too :-)