I’m Susan and I’m new here. My diagnosis was March 16th and I just had my first trial dose of Methotrexate.
I’ve dealt with osteoarthritis (Arthur as I call it) for many years. I’m 56 now and I’ve dealt with Arthur since my 20s.
Now I’ve got the psoriasis fun to go with. Do you all get the skin peeling thing too? Is this just part of the psoriasis? The skin on my hands, especially my fingers and my feet, especially my toes, feels ‘crunchy’. Now it’s coming up my shins and on my knees. My elbows finally look and feel better. It was on my lower back and now it’s crawling up my spine. Is that what this nasty stuff does?
Is it just me? I’m scared to death of the drugs. My feet and hands hurt and I feel like I’m 102.
Ok, all better now. I’ll have some cheese and crackers with my wine now.
Do you have a diagnosis of psoriatic arthritis? Just wondering as you don’t mention it specifically. Wasn’t sure whether you’re taking Methotrexate for psoriatic arthritis, skin psoriasis or both.
In the past I’ve had inverse psoriasis, mainly in my armpits. It was persistent but I got used to it. Then in 2015 - 3 years after PsA was diagnosed - I got an almighty flare up of psoriasis and finally understood 100% what people with bad psoriasis were complaining about. We (i.e. my rheumy, my dermatologist and me) got the skin flare up under control after about 9 months and most of my skin returned to normal pretty quickly. How that was achieved is a bit of a long story, but I thought you’d like to know it can happen.
It certainly is not just you, nothing you’ve said here is unique, unfortunately. But at least that means there will be plenty of others here who will understand and have advice or ideas to share with you.
Managing psoriasis can be hard work but worth it. Are you seeing a dermatologist? If or when you do, make sure they give you a plan, a flexible plan, for managing and treating your skin.
Fear of Mtx? Again, many of us have felt the same way. I’m a lucky so & so, I’ve been taking it for years without any unpleasant side effects whatsoever. Many people find that the side effects, if any, are relatively easily managed. Drinking plenty of water is really, really helpful. And um, without ruining your whole evening, you’ll be going easy on the wine right? Not a great idea to have more than a few glasses a week while on Mtx.
Tell us more, if you’re scared just yell and we’ll be right back to you.
Yes, the Derm and Rhumy both said PsA. Oh Joy. LOL I’ve tried Triamcinolone and Clobetasol ointments. They help a bit but oh I feel so greasy. Better greasy than crunchy I think. LOL
Both docs feel this is a bad flare up. I had psoriasis off and on as a kid (like 11 or 12 yrs old) where I would peel like this but never this bad and never in SO many places. Now the joints in my fingers and hands and my toes and ankles are swollen and red and ouchy!
Oh and for the record…no wine. I read all the paperwork. Dang! LOL
You know in the long run this could be SO much worse. This is inconvenient, a tad ugly and painful. But I’m ok. It is so nice to have some support from those of you who understand.
I always wonder if if it’s really osteoarthritis when you have PsA? Isn’t it damage from PsA? Or is it called osteoarthritis even if PsA caused it? You seem young (sorry for the “you’re too young to have arthritis” i hope you get what i mean) for “normal” osteoarthritis especially since you say you’ve had it since your 20’s?
There again PsA homes in on areas of weakness such as pre-existing osteoarthritis and OA (or the damage it causes) could also be a trigger factor for the disease.
And yes, it is called osteoarthritis even if it’s caused by PsA, it’s then ‘secondary osteoarthritis’. Additionally I can think of at least one person on this site whose ‘osteoarthritis’ turned out to be erosion from PsA when it saw the light of day during surgery.
So there is a difference between osteoarthritis and damage from PsA?.. i thought it was the same thing just a different cause… but i also read that osteoarthritis might be inflammatory after all…
As I understand it, osteoarthritis is basically what happens in joints when the cartilage wears down or gets damaged in some other way. Inflammation in joints due to PsA can have that effect, just as ‘wear and tear’ can. Any resulting damage to the bone in the joint will look the same, whatever the cause.
PsA erosions have their own distinctive appearance. Ultimately the outcome can be the same or at least similar: damaged joints.
A very ABC type of patient education course I went on at one hospital, hammered home the fact that PsA and RA can cause secondary OA as well as other types of damage. That made me confident that ‘secondary OA’ is well-recognised, it’s definitely out there rather than being a minority view. Unfortunately though, some doctors will emphasise the fact that most people get wear & tear OA in order to shut PsA patients up.
On the other hand, the thinking about osteoarthritis possibly being inflammatory has not gained much ground as far as I can tell. Not within the NHS anyway. I read something about there possibly being an inflammatory spectrum, with OA at the lower end, rather than a sharp dividing line between OA and diseases such as PsA which are termed inflammatory. Personally I’d put money on a significant change of thinking about OA in the future, but I doubt I’d live long enough to cash in my winnings.
You need my experience now! It’s not just you!!! I was scared to death of the drugs, too! Three years ago (almost to the day) some of the moderators got me on the right track about that, though! I really didn’t have to take many drugs because I pretty much shied away from everything my rheumatologist tried to prescribe for me–I did have prednisone a couple times and that worked wonders, but NSAIDS eat holes in my stomach and I was afraid DMARDS would do the same thing. So it finally came down to being convinced I needed SOMETHING and my friends here (at least 5 of the mods) gave me a “gentle” push–actually some of them yelled at me–but it was what I needed to get me to suck it up and get on a biologic asap! So, I ended up on Enbrel July 1, 2014 and it worked so fast it was unbelievable! I had definitely had my doubts, too…I thought if it doesn’t work, I’m screwed and life will just continue to be miserable. But, there are so many options. Also, I was afraid of the cost, but in America if you have private health insurance you can get “Enbrel Support”, which covers most of whatever your insurance doesn’t.
About the crunchy psoriasis…I’ve had some psoriasis on my lower legs despite the Enbrel (but nowhere else, so that’s a huge improvement). Anyway, a couple months ago it got really inflamed, red, burning–the clobetasol is really strong and my doc had told me not to use it more than a couple times a week, so I was using betamethasone heavily a couple times a day. Well, the light finally went on upstairs and I realized I was using too much betamethasone…I almost stopped using it completely for a few weeks and used a good unscented body lotion most of the time instead, and, voila, the burning and redness disappeared. IDK if your crunchiness is from too much clobetasol, but just thought I’d share what happened to me.
I think it was easier to call it Osteo rather than what it really is that we know now. My Sed rates were through the roof. My family has a history of Osteoarthritis and it really think back then the doc was just looking for a way to get me out of the office.
Susie, you are in such good company here. Some of us went for years, like you did, without a proper diagnosis. Others were lucky enough to find a doctor who was able to “nail” PsA on the first visit. Most of us have been frightened – if not downright terrified – of the medications that are part and parcel of controlling this wretched disease: reading those patient information leaflets is enough to give anybody palpitations! Yes, we get it, and we’re glad that you’re here with us.
But here’s something to think about. Most of the adverse effects and side effects of the best medications that we take for PsA are either reversible on discontinuing the drug or treatable. Not pleasant, mind you, but you can deal with those scenarios. The damage that this disease can do, on the other hand, is something else again: joint damage is not reversible, and treating it involves scalpels, saws, screws and metal parts. And then there is the damage that can’t be treated, such as extensive joint damage in the feet, which can render you disabled for the rest of your days.
You’ll often “hear” someone here say “Fear the disease, not the drugs” for good reason!
