Hi I’m Sharon not exactly new to psoriasis but new to psoriatic arthritis. In 1994 I had what I thought was a “minor” slip and fall accident that changed my life forever. Two knee surgeries in the span of 3 years. Then in 1997 I discovered a red rash on my right hip (my left knee was the one damaged). I saw a dermatologist and he diagnosed psoriasis. There was no itching just some ugly red bumps. I was given a topical cream and things cleared up or so I thought. I had a life to go on with. I had a family to raise and a career I loved. At the time I was only in my 30’s but the knee never got better. I dealt with the “osteoarthritis” as a result of the accident with methotrexate, gold, NSAIDS and other medications that I have forgotten. Fast forward to 2011, I found myself unable to swallow one day. Strike two, another autoimmune disease I was diagnosed with Graves’ Disease (hyperthyroidism). I had radioactive iodine therapy on my Thyroid in 2015 but my knee became worse (now buckling). My eyes became very dry and I noticed I had trouble concentrating at work. Since I worked with numbers this was troubling. In December 2016 I had the worst knee replacement- I now need to have the other one done too. However, rather than recover from the surgery I have had more red patches on my entire body. I wake up unable to move sometimes well into the afternoon and my feet swell so badly I can’t wear shoes.I saw my Rheumatologist who told me to see my dermatologist. The dermatologist did a biopsy on my left (dominant) arm. I was just told I have psoriatic arthritis. I have not been able to process what this means. I’m only in my 50’s yet my world is upside down. Thanks for listening.
Hi and welcome SharonB!
Another long and winding road to diagnosis. It’s a similar story for many of us. Kind of wears you down, doesn’t it? And then it’s all crowned with a dx of PsA … it’s tough, it’s confusing, it’s scary.
It’s interesting that your ‘osteoarthritis’ was treated with the DMARDs e.g. Methotrexate that are properly reserved for inflammatory arthritis. You’re only the second person I’ve heard of who has been offered Mtx for what is supposed to be a non-inflammatory condition. Or did someone suspect you might have PsA even then I wonder?
For many of us the period after diagnosis is the worst time. But once the doctors know what they’re dealing with - and when you know too - there is hope on many fronts including acceptance or adjustment or whatever (we sometimes argue a bit about which word or words cover it!). And then there’s the prospect of a much more determined and informed treatment plan, not always a straightforward path, but it can be. For me it has been relatively straightforward and I was on the long and winding road for yonks too!
Allow yourself this time to grieve the diagnosis 'cos heaven knows it’s been a long time coming. We get it. But you know, things may well get a whole lot better, that’s a realistic hope to have. So glad you’ve joined us, sorry you needed to.
Welcome! I’m sorry it took so long to get a diagnosis… but hopefully you will be able to function normally again when you get the right medication.
You don’t have to figure it all out at once… take your time! It’s a lot to deal with.
Hi Sharon, sorry you have had such a long ordeal with surgeries and meds and sounds like tons of pain that never resolved. I’m sure you tried to ignore it, just like we all do sometimes–tried to enjoy the brief times when somehow you had a “good” day and a glimmer of hope…
I’m glad you found this site, despite it’s a sad thing knowing you have PsA. There is medication in the form of biologics that I would hope your rheumatologist and dermatologist will agree is something that can help you. Not to be scared of the biologics–most of us have no SEs from them and we are living with a lot less pain and other symptoms (fatigue, weakness) than we did before the PsA was treated…and a bonus is you will have fewer of those “ugly red bumps”, too!
Hang in there…I’m still sorry you’ve had such a tough 20+ years, but don’t feel defeated–there are so many options now that you’ve been diagnosed!
First let me give a cyber hug Sharon as strong or as gentle as you need it. I so get the ‘world upside down’ bit. I had skin psoriasis horribly as a teenager which all but disappeared completely when I so badly fractured my shoulder in 1999. Before that since my 20’s it gave me no issues at all, teeny patches on my elbows. And then following an elective operation to correct my gross bunion, I too was landed with the PsA diagnosis aged just 54. And my whole world was also turned upside down and I was also so horrified. So frigging horrified. Most especially as like you, I couldn’t barely walk. No rings would fit on my fingers and I wear both my grandmothers’ engagement rings with enormous pride, and I was unbelievably exhausted and frightened in addition.
These guys on here were so fantastic. Dealt with my serious tantrums and simply educated me. Not that I listened very well initially either. A feisty Irish woman am I! But they so collectively just helped. So read all over the site, it so helps.
So let’s break this down. Skin psoriasis usually responds to better comfort levels with various prescription creams. In addtion slather yourself in decent mainly non perfumed lotions. Aveeno is great, ordinary vaseline is great, E45 is great. Your skin will be dry as you know so just up the moisturising. Persistently. It might all be red and horrible but you just need to feel comfortable. Forget it’s red and horrible for now. And remember skin psoriasis’ best friend is the type of stress you’re now dealing with. It was for me anyhow.
As for the thyroid issue - where are you now with that? Did the radioactive iodine work? If so you should now be OK with that. If not your thyroid specialist should be managing it for you, so you are OK.
As for the PsA issue. That incapacitates you horribly and makes you utterly exhausted, along with both other conditions too. And all that can make you so very low in mood. That’s normal. What you’re presently feeling is normal. You’re not over reacting at all.
But there is light in this tunnel. Meds for skin psoriasis and PsA together usually start with methotrexate. It’s usually the first med prescribed. It helps both. So ensure your dermatologist and rheumatologist are talking and working together and get on this road as soon as you can. I had such a temper tantrum about it all that it took me a year to accept I needed to walk this path, And I’ve only just started. But I’m glad I got there. First I was precribed prednisolone (steroids) which made me understand just how incapacitated I had become too as suddenly I wasn’t anymore. They’re not for everyone but they certainly work for me when needed. All the meds used to treat PsA have a long stretch before they do anything useful, so they can help if you suit them. As you’re in the USA you might go straight to ‘better’ meds which I believe are more effective, as Grandma J described. It depends on what your insurer’s protocol is.
Hope this helps. But for now be gentle with yourself. And remember how you’re feeling presently is perfectly normal. And quite simply you’re now not alone. More cyber hugs.
Thank you all for the very warm welcome. Yes my thyroid is thankfully under control. I saw my Endocrinologist just today to give her the “good” news. For a while now I have been experiencing tinnitus, trouble swallowing, vision problems, swelling of arms, legs and feet, severe fatigue, cognitive disorder - I can’t concentrate on anything as well as pain in my shoulders and down my back.
My Endocrinologist saw the problems and believed me though she wasn’t sure what was going on as Rheumatology isn’t her specialty. I had seen in no short order a ENT who questioned if I really had a swallowing issue- read it’s all in my head to first Rheumatologist who told me to do Tai Chi as we are all leading stressful lives - there’s nothing wrong with you or second Rheumatologist who swore I have arthraligia, sjorgrens and raynauads syndrome - take a muscle relaxant and go away. Finally, 3rd Rheumatologist said I have Fibromyalgia but she suspected PSA too though she did not have a biopsy report. She wouldn’t see me again until I saw a dermatologist and he did a biopsy. Othomologist suspected either sjorgrens or PsA but he had been disappointed with the runaround I got from first two Rheumatologists. I know from experience not all doctors are good from the very first Endocrinologist I saw (there’s nothing wrong with your thyroid)- I knew my body better and found the Endocrinologist I have today. I know it’s going to be a long road ahead. I am fortunate that my husband is a New York State Government retiree his health coverage is far better than what my former Company ( I was terminated while out on long term disability) offered. I am glad to have found all of you though under these circumstances. Life is what happens when you’re busy making other plans John Lennon once wrote. Truer words were never said.
We’re glad that you found us, but it’s a shame that you’re a member of the PsA club. You’re also the member of the “It’s been a long time coming” group. The thing is, once you have a diagnosis, you can start looking forward to feeling better, but it may take a while. Meanwhile, welcome to the gap (not a fun place to be, I might add).
One of the infuriating things about PsA is the skill (or lack of skill) that a lot of doctors display in diagnosing or assessing it. You’ve had a couple of rounds of experiencing this already. And while doctors fiddle, your joints can burn … mine did. Fortunately, I finally got to specialists who took aggressive action and got my situation under control. That turned my disease – and my life – around.
We’re here for mutual support, and it’s great that you’ve found us.
Sharon, how are you doing these days?
Hi Seenie. Waiting for a follow up with my Rheumatologist which isn’t until July. So I am still in the “Gap”. The flares have been frequent lately and I don’t know if the weather has anything to do with it. The dermatologist mentioned something interesting. He said that a disproportionate people with psoriasis have MS. I don’t know if anyone here has heard or experienced this.
That is interesting about MS! Sounds like the kind of factoid that our @tntlamb would be interested in.
July’s not very far away, so hang in there and let us know how it goes.
Both diseases (psoriasis and MS) are autoimmune T cell-mediated diseases. There was a lot of work done 5 or so years ago trying to determine a direct link between the 2 but it never panned out. There are actually maybe 60 known autoimmune T cell-mediated diseases. Its not so much a matter of the disease as it HOW the T-cell disorder manifests itself. That’s why the idea if you have one AI disease, you are at risk for others got started. Its really more a case that docs need to take more math classes (statistics) Otherwise they wouldn’t be repeating what is generally “crap” and raising unnecessary fears in the folks they are trying to help. Its interesting but mostly meaningless.
The problem isn’t whether or not you have MS, SJS, Lupus, PsA etc but rather that you have messed up T-cells. Almost every aspect of the immune response is controlled, in some way, by T cells. When the researchers started concentrating on the T-cell function, thats when we made some actual “progress” with arthritis and even HIV and the birth of “biologics” the first round were TNF inhibitors succeeding meds have gone after other things.
The bottom line is that finding relationships in statistics has done more to prove statistics “lie” than anything. The worst is for anybody with any form of autoimmune disease, is that it raises unnecessary fears with affected patients of when the next “foot will drop” The bottom line is let tomorrow take care of tomorrow and IGNORE these “interesting” discussions…
And I’d add to that to not look too long at WebMD. Each time I’ve read it I have convinced myself that I have beriberi disease, dengue fever, or contracted tsetse fly-induced African sleeping sickness among other things. Oh and I’ve never set foot on the African continent but that doesn’t stop my tsetse fly fascination!
@janeatiu I hate to do this I really do, but as you know “bug diseases” were sort of my specialty. Now that you can sleep at night because you have never been to Africa, You can stay awake at night again. You see while you have never been to Africa, I know you have been in some really rural parts of CHINA. So there may not be ant tsetse flys in China there is a TON of Trypanosoma brucei evansi which is what causes African Sleeping sickness. In fact the bug is so GOOD in China and so prevalent that it has become antrycide-resistant. China had already had a quinapyramine-sensitive situation. In any event its entirely possible the way this bug hasevolved to have a minor and chronic case…
There are some fascinating studies… https://www.ncbi.nlm.nih.gov/pubmed/20813092
You do not hate to do that. You like it. Poor Jane.
yeah, so, like, wow, and errr, thanks?