woah...Jasmine...you've gotten A LOT of information in this thread. I'd advise reading and re-reading it.
We've talked about joint damage which is definitely dangerous and critical to get ahead of with aggressive DMARD treatment. But you also talked about pain in your clavicle and chest so I wanted to mention the soft tissue damage that PsA can cause. You may want to read up on enthisitis which is the swelling of soft tissue (tendons) at the attachment points on bones. So not only does PsA affect your joints, it can also have a terrible effect on your tendons, too.
My own experience with enthisitis was misdiagnosed as tennis elbow for months and months. While my elbows were the primary culprits at first, I've also experienced enthisitis in the chest and mid back where the tendons near the diaphragm were inflamed causing sharp stabbing pains with most movements and with, inconveniently enough, breathing! I also damaged a tendon in my knee from exercise and had to wear a lovely almost full-length leg brace over my clothes for 8 weeks.
So remember that not all your aches and pains are bone-related. There could be some tendon unhappiness too. Oh hurray!
(PS:I'm someone whose sed rate and blood work are always normal except for a little anemia)
For PsA guidelines says that start with biologics and DMARD but in ankylosing spondylitis first NSAIDs are tried and then DMARD and then biologics. If you have prominent psoriasis then doc would like to start with DMARD like methotrexate as it works on both. If psoriasis is little then try topical clobetasol(topical potent steroid) and NSAIDs may give you relief. The best way to curb HLA B27 arthropathies is to ve as active as you can, its a boon to have this as to keep yourself out of pain you will remain so active that deadly diseases will not catch you(lifestyle diseases). For psoriasis I will say, keep yourself in warn environment. Don’t use cold shower, keep the temperature of your home few farenheit more than normal. If you are going out wear warm clothes, and never allow your scalp or skin to be dry. Do lot and lot of exercises. Don’t worry your bone will not crack and at the end please take lot of Vit D supplements. Like cholecalciferol 60,000 IU sachets. Vitamin D levels are inversely linked with autoimmunity. The lesser the level the more prone you are. And with Vit D please take calcium too as HLA B27 loves bone too and eats it away.
I forgot the whole enthesitis/low Vitamin D part of this discussion.
I have "arthritic changes" in my feet but what loves to give me fits are my plantar fascia. For some reason, the left one has been tight the last two weeks, even with nightly massages. I also have a very tender Achilles tendon on my left foot.
As far as Vitamin D, a little over a year ago, I won the "prize" in one doc's office for having the lowest Vitamin D level the nurse practitioner had ever seen. I've been taking 4500 iu every day. I'm not falling asleep at work any more. I also feel SO much better.
I also have found that the PsA does NOT react well to my becoming chilled. All my life, I've *hated* hot weather because you can't take off enough clothing to be comfortable for long. Until PsA. For the first time this past summer, I had to wear a very light cotton sweater at my agency's annual meeting because the hotel was so cold. That's happened a couple other times this year--when we saw John Prine in late June and Vince Gill in mid-September. I wore a sweater when we saw Don Williams October 17 but ended up with my husband's jacket over my arms anyway. In short, I'm going to have to start wearing/bringing a light cotton sweater most everywhere in the summer. Chances are I may need it.
For the last several years, I've also used a light flannel sheet during the summer. That's in hot, humid Kentucky, which has also never happened in my life until I was diagnosed.
Jasmin, I'm sorry, but that really bothers me your rheumatologist thinks the pain you're experiencing in your shoulders and clavicle is fibro and not psoriatic arthritis! I had that same pain--more of an achiness directly below both clavicles. They were always sore and would hurt more if I rubbed or pressed on them. That was all part of my PsA! Your rheumy needs to read more and think out of the box. My arms and legs were always weak, too, and that symptom stopped after I started taking Enbrel. My wrists were always sore, too. I couldn't effectively wring out rags, turn tight lids off or hold anything that weighed more than a pound or two. Ugh. I hope you can bring some of our information to your rheumy and tell him you know people with your same symptoms and they were PsA symptoms, improved with biologics!!!!!
Well I got a physical and my vitamin d levels are low it’s 18 and it should be above 30. I see my rhuemy on the 23 of this month I saw a dermatologist and she was no help she doesn’t think that my hands turning red when I flare up mean anything. I will be having an mri on my shoulder if that means anything I’m going to really try to have a good talk with my rhuematologist I’m going to ask her to treat me to see if it helps me
Of course, I'm not a rheumatologist, and they do have ways of testing for fibro. But unfortunately, fibro (and yes, it is real, and I have friends with it and they suffer greatly) can be what I call a "garbage can" diagnosis. Whatever they can't figure out gets tossed into the fibro can, to be written off as basically untreatable. I would say that if aggressive PsA treatment (that is, treatment as aggressive as your rheum is prepared to prescribe) doesn't do anything for those symptoms, that maybe it is fibro. But please resist the fibro diagnosis as long as you can.
This is one of my personal prejudices, but I think worth bearing in mind.
Yes absolutely ! The symptoms I have are so extreme! My rheumatologist is suppose to be the top doc in Torrance ca and still nothing. Let’s se what she tells me on the 25
Yes, absolutely. My palms were just like that on and off for a couple of years, during and after a severe flare. It stopped once the disease was under better control. 'Luminous' is the word my rheumy used and it was obvious he'd seen the same thing loads of times.
Jasmin said:
Does this look familiar to anyone? The redness in my hand when I start to flare up
