New to the group introduction

General
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Hi Everyone

This is my first post.

It is likely to be a long one as I give you some details and attempt to put my thoughts together.

I am glad to have found this group, as I’m keen to compare notes and gather information.

I am a 50-year-old woman, living in Canada

I haven’t yet been diagnosed but from what I’ve been reading I appear to tick my many of the diagnostic boxes.

I understand that it’s important to act quickly to reach a diagnosis and treat aggressively to prevent joint damage so I will make an appointment to see the GP and move things forward towards a referral to a rheumatologist

Although I have never actually been diagnosed with psoriasis I think it’s likely that I have it, albeit a fairly mild case

Over the years I have had occasional bouts of scaly skin on my upper torso, primarily on my upper arms

This has been frequent over the last 5 years or so.

I think it’s very likely that I have inflammatory arthritis based on my symptoms.

I was in reading about the differences between rheumatoid and psoriatic arthritis and the symptoms seem to fit the latter.

Regarding joint issues.

Around 18 months ago I stated to experience lower back pain and around 8 months ago the focus of the pain has been the SI joint on my left side

At the time it was a stand-alone issue and I thought it likely to be related to weak posterior chain issue as years before to that I had developed an issue with y left knee. The physio at the time thought it was related to that and recommned some strengthening exercises

Until recently and the latest developments none of this concerned me

Then in January this year I started to get swollen fingers and wrists. Not extremely swollen but noticeable and my rings and watch became tight

I put this down to either water retention or possible hormonal.

Then this month, starting a couple of weeks ago, I started to get tenderness and stiffness in my finger joints and wrists. This is mainly, in my right hand,

The stiffness in mostly in the first joint of the fingers and there is a general discomfort across the front to of my hand and in my wrist

I was reading that one of the main differences with RA and PsA is related to which finger joint is affected and also that joint issues tend to be symmetrical in RA

I have been taking ibuprofen twice daily and applying ice to my right hand, as well as wearing a glove to held stabilize the wrist and provide some compression

I have literally only started putting all of this together in the last 2 days

I am feeling fairly overwhelmed and concerned about how this will progress.

I am a pragmatic person, am conducting research on the illness, treatment and drugs but I’m feeling very anxious about this

I wanted to join a group such as this so that I could touch base with others who are going through the same thing.

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hello and welcome. i am a recent diagnosis too and I am also still in the freakout stage so i apologise as my reply wont be full of reassurance yet.
You sound a little similar to me… I have had joint after joint get added to the list as well as my back.
It sounds like you may have it. Or something similar However I would wait for the diagnoses before you comit your fears to the condition.
Prior to my diagnoses I had all sorts of fears about what i might have RA/or worse and no idea that it was related to Psoriasis. You can be very wrong is all im saying.
However if it turns out to be PSa. Its not the end of the world. There are many treatment possibilities and many people do quite well. There are many experienced people on here that are very reassuring and a wealth of information. Ive only been on here myself for 24 hours and already found these poeple a great help. About your wanting to get on to treatment quickly to save your joints, I know exactly how you feel. However after my 5 years of undiagnosed symptoms I had a recent bone scan and they could not find any damage!!. I was blown away because it does not feel like there is no damage. So im hopefully set to make a full recovery with treatment. Yay. So with your 18 months you will hopefully be in even better condition! and it seems to be a bit of a trend, ive read a few posts on here about people who were freaking out but have no detected damage. So be positive. Im sure either way you will be fine. Good luck and keep us updated.
Heres my store posted only yesterday if you would like to read it… Hello All. Im new here. My Story

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Welcome to the group! You’re on the right track to seek out a diagnosis, as it will be needed for some of the meds.

Don’t get too hung up on these joints for PsA and those for RA. My mcp joints don’t know that they’re not supposed to be involved, yet they are.

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Welcome and it is great to hear you are being proactive! The better educated and researched you are when you speak to your medical professionals, the more you will get out of those conversations, and usually it will help with getting more aggressive treatment early, which if you are diagnosed with PsA is the goal.

It can be reeallly hard, particularly at the start, coming to terms with this, but for most of us, it really does get better, and for many (I’m one), near remission is even possible. Check out the articles in the newbies guide, and there are always people here to who are amazingly helpful when you need it.

And I’m with Stoney on the joint pattern - don’t get too hung up on it - my joints didn’t read the book about what pattern they were supposed to be involved in :joy:

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Welcome, ktel

And I say “yay” to being proactive as well. Many of us here had strange and transient symptoms for years which made life difficult. But they remained undiagnosed because, well, you know … it’s picking up those heavy grocery bags, menopause, you need a new mattress, if you’d bend your knees when you pick things up, hormones, you should exercise more and lose a few kg, there’s stress at work … and so it goes until finally someone does a head-slap and says “there’s something wrong here”. And if you can get to that point sooner rather than later, you’re lucky. I wasn’t. We can’t diagnose you, but if it is PsA, research leaves no doubt: early diagnosis and aggressive treatment gives the best prognosis.

You’re going to your GP soon. Unfortunately, our experience here (I think I can speak for a lot of people …) is that GPs know very little about rheumatology. So it helps if you have done your reading. If you go in and simply say your fingers are fat and painful, you know what you are going to get. You’re going to have to go in with your grocery list of what you have noticed, and what you have read.

The GP will do blood work. If your results show no inflammation outside the normal range, the doc will probably rule out an inflammatory arthritis. And this is where the process often goes horribly wrong: 51% of people with PsA have inflammatory markers (ESR, CRP) in the normal range. It means nothing. You still need to see a rheumatologist.

GPs aren’t generally a whole lot better at dermatology than they are at rheumatology, unfortunately. Flaky dry skin? I was told to use lotion. WEird toenails? It’s fungus. The GP got it wrong, but a dermatologist identified psoriasis immediately. Don’t be put off: get a derm referral at the same time. The rheumatologist will want a skin diagnosis to nail a PsA diagnosis, if that is what you have.

The bad news is that in my neck of the province, it is a 6-9 month wait for both specialties. I don’t know how it is in the golden horseshoe. So you should get both referrals at the same time, or you could be well over a year before you get a definitive diagnosis.

And a definitive diagnosis is what you want. If it is PsA, with a solid diagnosis, you will be able go here. And that is the place with world class PsA researchers, who leave nothing to chance. They literally turned my life around (a good fifteen years to late).

So, again, welcome here. We’re glad you found us, and we hope that you will be glad as well.

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Hi Seenie,

Thanks for the information.

Based on my general experiences with the Canadian health system and GPs in general I already anticipate that it will not be straight forward in getting the appropriate diagnosis and referral to a rheumatologist in a timely manner.

After that getting access to the appropriate drugs at an affordable price is another area I am researching

Anyway one step at a time…

As you know family physicians are in short supply especially in more rural communities.

I’ve been living in Niagara Falls for about 3 years- I was previously in Toronto.

Whilst living in Niagara Falls I’ve mostly visited walk in clinics. I did actually find a family physician around a year ago and registered with him although I haven’t actually visited him yet.

Due to the lack of medical options where I live I am thinking of going to Toronto to a highly recommended full facility walk in clinic there. I have read good reviews and apparently they are good with referrals.

I’m basically exploring the best options of negotiating the medical system.

It would seem to make most sense to get a referral there as there is a larger supply of specialists as well as the clinic that has been mentioned here a few times.

I actually already see a specialist in Toronto for another medical issue at St Mikes Hospital.

I am in the process of compiling all of my notes that will include my symptoms and dates as well as literature from the Canadian Medical Association, and Canadian Assoc of Rheumatologists.

Thanks for the advice on getting 2 referrals one for the

dermatologist as well as the rheumatologist.

Could you please run me through the sequence of events in getting to see a rheumatologist

For instance when you went to see your primary care physician did he/she just order blood tests or was imaging also done?

Did you need to see a dermatologist first to get a diagnosis of psoriasis before you could be referred to a rheumatologist and if so did that referral also come from your GP?

I was reading that you can have PsA without having psoriasis so you could see a derm come out negative for psoriasis but still actually have PsA.

As I mentioned , I have never been officially diagnosed with psoriasis but for many years have had intermittent rashes that fit the description.

There’s also psoriasis in the family, my brother has it .

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Family history of Psoriasis is critical…

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It is indeed.

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When dealing with your diagnoses:

Patience

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OK, so here’s what happened to me:

After years of miscellaneous complaints culminating in terrible foot pain for several years, an x-ray in June 2011showed extensive joint damage in the mid-foot. My doctor referred me to a rheumatologist. An appointment came through for March 2012. Yes, a nine month wait.

Meanwhile anxious to start treatment, I went cross-border and in July saw a rheumatologist in Buffalo who said yes, in her opinion it was PsA but needed a dermatology opinion on my nail issues. She could not prescribe for me because she wasn’t licensed in Canada.

I pestered my GP to give me MTX. She did, like a baby dose, to shut me up.

In September 2011, I ran into the local radiologist (brother of a high school friend of mine) from the hospital at a social event. I asked if I could come to his office to talk about my x-rays. He was happy to do that until we sat down and heard my story while looking at the films. Then he wasn’t happy at all: he picked up the phone, and called his rheumatologist in Ottawa. The next day I had an appointment.

The rheumatologist said she concurred with the Buffalo rheum, but she would have to have a diagnosis from a dermatologist. Meanwhile she started me on a bigger dose the front line drug, MTX. The dermatologist appointment came through in June 2012. She confirmed psoriasis.

So from discovery of joint damage to firm diagnosis was a year.

If you are willing to go to Toronto (and that would be my choice), you can get the job done pretty quickly by getting an appointment at the (new-ish) Women’s College Hospital PsA clinic, as well as from Avantderm in Toronto, which has an excellent walk-in dermatology service. I will send you details in a PM.

Depending on how long it takes you to get into the WCH PsA clinic, you might have a firm diagnosis in a few months. And that diagnosis would be from someone who is a leading, published, expert in the disease.

Good luck with this.

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This is great information thanks so much.

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Welcome to the group! Reading the histories of new folk is always like ticking the boxes of my own PsA! So many strange symptoms, so many interpretations!
The period from diagnosis to “relief” is often kinda discouraging, since most of the treatment meds have a 2-3 month trial period before their effects can be determined. So many people on this site helped me during period. (Special shout out to Seenie!) Every step forward is a good one, using your voice to advocate for yourself is essential and dismissing any symptom is not to be tolerated.
One of the things that threatened my early days with the diagnosis was reading some of the suffering that some members are going through. Seenie reminded me that the folks who were doing well, probably aren’t posting, lol! I am doing pretty well, 2 years in. I think your idea of going to Toronto is the best one, but I am treated in St. Catharines if you’d like a local voice. Cheers

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Susan, it’s great to hear from you again! None of us do this work for the thanks or the recognition, but when someone shows appreciation it makes my day every single time. Thank you so much!

Seenie

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You were a lifeline in a chaotic time… and now I’m one of the - relatively! - healthy folks!

Susan

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Susan, how great to hear that you are one of the “relatively healthy” folks. Me too! (Let’s not talk about the damage … that’s a different story.) Let’s not hijack ktel’s introduction post, but you will have to spill on your journey from “chaotic time” to “relatively healthy” sometime.

Seenie

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Hi ktel, and welcome! You’ve come to the right place!

You are definitely not alone with the feelings you’re having. It is overwhelming to be facing such unknown with a disease that, if you look at pics online, scares the heck out of you! Luckily, most PsA sufferers do not end up like that. Hopefully, you will continue researching and seeing a good rheumatologist who can get you the meds that help slow down the disease. I was in my mid-50s when diagnosed. At first, I wanted to “tough it out” because I was so scared of the meds. I’m paying for that now because the untreated PsA caused some damage, especially in my feet and lower back. So, yes, of course, do your research, but don’t wait too long to get treatment. The biologics, i.e., Humira, Enbrel, etc., are NOT as scary as they appear.
I found this group 3-1/2 years ago and if I hadn’t, I don’t know how I would have turned out. I was really desperate at the time, and nobody in my family or circle of friends/coworkers really knew what I was going through. So, I thank my lucky stars this site was here and I stumbled upon it! They encouraged me to get serious treatment before the disease damaged me so severely life REALLY wouldn’t be worth living.
Sorry you had to come here, but glad for your sake you did!

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I’m doing a lot of reading right now and the more I read the more confused I become.

As I mentioned I haven’t yet been diagnosed. I will be visiting the GP in the next couple of weeks

I just want to gather information and educate myself as much as possible before the appointment.

I have looked at common symptoms of PsA and am trying to determine if my symptoms correspond.

I’m beginning to wonder if it’s possible that I have a number of ailments simultaneously that are not related or if they could be related to RA.

Sacrolitis, swollen hands and wrists with swelling and tenderness of the distal joints and tendons in one hand,combined with issues with my left knee.

I know that I can’t get any answers to these questions here and it will have to be assessed medically ,I’m just documenting my thoughts on the matter.

One of my main concerns is the diagnostic process itself.

From what I’ve been reading there are no definite tests more a question of probabilities and ruling in and out other possibilities.

I want to make sure that the appropriate testing is done to try and accurately diagnose this.