@Poo_therapy thank you for your very kind reply.
It’s kind of crazy. I felt in a better place mentally with it before I joined this forum lol but mostly I guess I was in the dark or in a bubble not realizing how serious it could be or is. And I think I’ve freaked myself out a little bit.
You are so right about mindfulness, exercise, talking and eating right. That all h pls so much. I just want to make the right choices for me moving forward. I want to be comfortable and live a normal life. This is still so much ahead of me… beside physical issues to possibly look forward to. Reading about some people biologics being like $3000 a month concerns me for my financifuture as well and wondering if this could end up being a big burden on yet husband and myself.
I think my prednisone is causing a bit of insomnia too so when I should be sleeping I’m just up thinking all this stuff which isn’t typicalling me.
I’m sorry you’re medication stopped working for you after all that time. I love how you’re comfortable with moving on though. Do you think your meds stopped working because like you said your stuff changes and travels around your body and maybe you’ve had another change and now need a different medicine for it?
Thank you ️
I so hope your kids don’t have PsA or anything like it! I can imagine how you would worry about that for them.
I practically begged for more prednisone too and the dr gave it to me but he did it differently.
First time I did 5 pills for 4 days then reduce by 1 pill each for four days. By the time I was down to my 1 pill. Each pill was 5mg. I was getting sore. I had an appt that day with him. He put me on 20 mg a day for 2 weeks then 15 for 2 weeks then 10 for 2 weeks.
During that time I’m also adding in methotrexate. Next week I’m starting. He was hoping it would help me have a smoother transition. But the prednisone isn’t amazing like it was my first go round. It’s definitely helping but I still am very aware of where my aches and pains are.
I am tough and can take a lot too. I was discussing that with my husband tonight. I don’t think he is even aware of the kind of pain I’ve been in and from reading stuff on here it helped me to be more vulnerable I guess. Because I have to slow down a bit and care for myself differently.
We live in Florida. Have my whole life. I am so heat intolerant now that it doesn’t even go with our lifestyle. We are outside with horses all the time and sons baseballs games and just all sorts of stuff that idk how to manage right now.
You’re telling me about walking with your coworkers. I’m so thankful they changed their tunes about that!!! I’m sure they really felt bad and good for you for going. But I felt so bad reading it. My mom recently turned 60 she was diagnosed with parkinsons 4 years ago and she is fatigued all the time and all sorts of other issues but everyone along with myself has given her a hard time about just pushing through because a lot of times it just feels like she is being lazy or giving up on herself and not trying to keep her body strong. … point is I hate those people acted that way towards you and I love that you told me because I think I owe my mama an apology and some extra support because I know how hard it is for me to get around now and it may just get worse.
That IS really sad, too, because it’s very young to get parkinsons.
I’d be so upset if I got diagnosed with that. It seems like such an old-age disease, and when you’re in your 50s - 60s you don’t really want to think of yourself as old. It’s shocking for me to be in my 60s though—for me, it’s like all of a sudden I’m in my mid-60s! Argh!! That IS old, really!!! Not too many years ago the average life expectancy was in the 60s. I want to be 50 again! I’m experiencing a mid-life type crisis (which I think most people have in their 40s?)…part of this is most likely due to being slightly disabled and worrying about being more disabled in the coming years. It’s so scary! It wasn’t a concern of mine—not even when I was first diagnosed with PsA. I just never imagined being so weak and having bad feet that can’t move as fast as I feel they should!
You’re new here—I’ve mentioned my mom who’s 93 and still kicking! Slowing down over the past couple of years, but come on—almost 30 years older than me and she’s done a lot better than me! I’d say my 64 compares to her 84!!! Disappointing!
I understand about your being hard on your mom…moms can be annoying—my mom annoys me sometimes and I annoy my kids, too! But, yes, an apology would be nice…or maybe just start being more understanding…she’s probably really stressed out and worried about what’s ahead for her.
(And probably worried about you, too.)
Take care! I hope methotrexate makes you feel better!
I’ve no idea why sulfasalazine stopped working. The science yet can’t tell us those things. I’m of the view that it seems most DMARD meds do eventually stop working or more likely one’s immune system finds a way around them. However it does seem when you finally make it to biologics, (here in the UK that’s if you’re bad enough - a fairly high bar - and it’s free too, thanks so much to the NHS) that rate of meds stopping working slows right down, that’s certainly good enough for me.
As you’ll have read on here, the mantra is ‘fear the disease, far more than the meds’. It took me some time to grasp that but I’m so glad I have, finally. And it does mean I’m living a far more normal life and a far more comfortable life. And hoping for it to get even more comfortable physically.
And yes pred can cause insomnia and race that brain lots. It’s a godsend to make you feel more capable but it’s truly not for the long term and can do untold damage elsewhere. It likes me but gave my mother ‘roid rage’!
Take your time and be mindful of pred on your emotions and what you end up thinking about and look forward instead of backwards.
I had similar concerns on the cost before I started biologics. I have really good insurance, and Enbrel/Humira was still going to be 1,500 after insurance (the whole tier 4 pharmacy 25% coverage). But my dr sent my script to a “specialty” pharmacy and they handled all the paperwork with the drug company and then it was only $5 per month. They never asked me any financial questions, so it’s not based on financial need. Just wanted to share that so you would know there are options and have one less thing to worry about!
@Rob3,
Are you on the Enbrel Support Program? That’s the plan (in the USA anyway) that pays the portion most private insurance plans don’t cover. I got the info about it from my dermatologist when she started me on Enbrel.
I have great concern about retirement, because IDK what sort of support program is available for people on Medicare. If I can’t afford Enbrel IDK what I’ll do! Cry a lot, I guess! And probably just keep working the rest of my life.
I had Iritus aged 13 and terrible facial acne, which I realise now must have been psoriasis. Then sudden onset of spondylitis aged 18 and did not get psoriasis again until I was 21 and doing my OE in London at the time. Wondered why I had terrible dandruff but a doctor gave the diagnosis as psoriasis. It cleared quickly after using coal tar soap and shampoo but then once again spinal problems occurred and I ended up in hospital where I was diagnosed as having psoriatic Spondylitis.
Now I’m in my 70s and the psioriasis has returned !! It’s incredible. Scalp, arm pits, ear canals and patches behind ears and notice some reddening on my face. It isn’t painful and know it’s been aggrevated by a lot of stress in my life recently. Not responding to the ointments I was prescribed. All I can say is the psoriasis is better than having the arthritis return in my spine so am fairly philosophical and count my blessings I can still do most activities.
Good luck and don’t be too concerned about psoriasis it isn’t always painful or noticeable to other people.
I was diagnosed at 31 and had no signs of psoriasis either, just a single blown up joint in my finger. Oddly enough, patches did start to show up, mainly as others have stated in ears, belly button and small ones on my head.
I have also been nervous to start drugs such as MTX or Biologics, but after combing through a lot of these threads it seems the general consensus is to get on something soon and take a very proactive approach as the real damage is being done behind the scenes that causes permanent damage and/or disability.
I am exploring my options by seeing a Naturopath in addition to my primary care, and my rhumeys have been a revolving door until I find a good one that I mesh well with and share the same feelings on a treatment plan. The Naturo had me do further blood work, stool samples, and put me on a vitamin D, a vitamin B, magnesium, and a very strict diet called the AIP (auto-immune paleo). While all of those May aid in flare ups or your overall day to day feelings, traditional doctors and medicine are very adamant that diet and supplements alone will not fix the problem.
From a genetic perspective, one of the orthopedic doc I had seen at the beginning explained the gene they test for to diagnose PSA. It’s binary, you either have it or you don’t and that gene will put you at a higher risk for developing it if you do in fact test positive for it. Ironically enough, he said his kids tested positive for the gene but he was starting them on medication early on to help prevent this terrible disease from occurring later on in their lives.
It’s a terrible feeling to be diagnosed so young in life and it really takes a toll on your mental health as well so my next doctor addition is most likely going to be a therapist to help work through this. This is one of the best support groups I’ve found in terms of upbeat and positive vibes. A lot of the others can be very depressing and trigger anxiety even more so! A close family and loving and supportive spouse really help as well.
This puzzles me big time! There are many genes associated with PsA but as far as I know they are not in any way, shape or form diagnostic, i.e. having one of them certainly is not a sure sign that a person will develop the disease. The most well known one, HLA B27 is, so I believe, now much more strongly associated with ankylosing spondylitis than with PsA and yet still does not mean that someone will definitely develop AS.
In short, there are no genes that can be used to diagnose PsA. There is no diagnostic test for PsA, it’s diagnosed primarily by clinical signs. And starting kids on medication ‘just in case’ sounds just awful! I’d run from that doc, I reckon his kids should run too!
The gene side of things is as yet just one part of a big and somewhat confusing jigsaw. Many of us ponder ‘why?’ but in this point in time the question seems futile.
I reckon the answer will come someday—hopefully in our lifetime and hopefully the cure will be simple and painless!
Obviously, it’s a matter of figuring out why the immune system turns on its own body—it’s interesting that there are so many different autoimmune diseases. So, hopefully, if they find a cure or prevention for one, it’ll give them enough insight into all and the autoimmune diseases will start dropping like dominoes!
I do not have psoriasis! The only thing close to it that I do have is the other symptoms of PsA and very mild nail psoriasis. I questioned it, too, for a very long time. I was adamant I needed to know the name of the monster in order to fight it. What I have learned is that I will drive myself crazy questioning what the monster is - but in the end it really doesn’t matter. If my rheumy is worth a darn, he’ll treat the symptoms regardless.
I also have never had psoriasis. My grandmother and 2 aunts on my mothers side were the familial connection. I do remember how severe and troublesome it was for my grandmother and how we all felt for her as it covered her entire body. She also had diabetes which I now share. Her later years were blighted for sure but somehow she remained cheerful. Funny how when you are young you never consider that one day this sort of thing might apply to you personally.
My understanding is that the psoriasis can come after the arthritis in some cases.
I have no psoriasis, although off and on many years ago had Psoriasis on my elbows. My younger sister was covered with a terrible case of psoriasis covering her whole body as a child, and at least one of my cousins on my father s side of the family.
Well I don’t want to start alarms but NOT ALL PSORIASIS is obvious or on the skin (ie nails its under the cutical and the damage shows up on the nail. (FWIW: Nails start in the nail root, hidden under the cuticle. When cells at the root of the nail grow , the new nail cells push out the old nail cells. These old cells flatten and harden, thanks to keratin, a protein made by these cells. The newly formed nail then slides along the nail bed, the flat surface under your nails .)
One of the more common spots (this is a man thing) is in the prostate. My granddaughter just went through a massive urological workup including urodynamic testing (wouldn’t wish that on anyone) as she has been unable to urinate on her own for a few weeks. After all that testing it was (you know whats coming) psoriasis in the bladder and ureter… She was switching biologics and the MTX dose was to low. A week of a higher MTX dose and shes peeing like a sailor on shore leave. None of those nasty urological procedures necessary.
The bottom line is psoriasis is way to often overlooked by PCP and we are sent trotting of to other medical specialists when ther is often a simple answer.
Glad to hear your granddaughter is peeing merrily now and has dodged another round of testing.
I can readily believe this, I mean that psoriasis is more than skin deep. But there is such a reductionist approach to PsA & Psoriasis amongst most of the practitioners I’ve encountered. I reckon I’d get short shrift if I even mentioned this as a possibility.
I did not have psoriasis that I could see until I did a trial of Otezla. I got thickened skin with slight scaling near the outer edges of each eye. Otezla did not seem to be helping me, so I tried Stelara. Then I got frank psoriasis lesions beside my eyes and small patches on other parts of my face. I quit Stelara after only two doses, since my insurance would not pay enough for me to continue the treatment. That was nearly a year ago,but the psoriasis patches persisted. There seemed to be little I could do to control the outbreaks.
Then I started putting about 3/4 tsp. ground turmeric into my food. I would put it in something containing fat or oil since I heard it was more bio-available when taken that way. My psoriasis started clearing up within a day or two. Now I can no longer find any psoriasis lesions on my skin.
I will continue to take some turmeric every day. Some of the ways I take it is mixing it with coconut oil or butter and putting it over cooked sweet potatoes or beans. I also mix it with heavy cream and stir it into plain yogurt. 3/4 tsp of turmeric gives a pretty strong spicy flavor, so I swirl it lightly so my tongue doesn’t make a lot of contact with the turmeric in every bite.
That sounds like a vain question, doesn’t it? But TG you asked! Psoriatic nails can be so ugly with their stains and pits and lifting and thickening. I was very self-conscious of mine, which were thought to be toenail fungus. And polish on fungal toenails is a no-no. When I was finally diagnosed, the derm told me that polish was just fine. It’s amazing what a good manicurist or pedicurist can do with those things, and for many of us it’s a major pick-me-up.
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I do not have psoriasis! The only thing close to it that I do have is the other symptoms of PsA and very mild nail psoriasis. 
I questioned it, too, for a very long time. I was adamant I needed to know the name of the monster in order to fight it. What I have learned is that I will drive myself crazy questioning what the monster is - but in the end it really doesn’t matter. If my rheumy is worth a darn, he’ll treat the symptoms regardless. 