As I read post, I notice that there are many members suffering from multiple Auto Immune Diseases. Is there not a way for doctors to glean this info and predict the onset of PsA? Case in point, I have suffered from Hypothyroidism and Psoriasis for over 20 years. If eventually the odds are I'm going to develop PsA and early treatment delays the crippling effects of the disease, then why not develop early treatment protocols. Waiting until a person is in a major flare to diagnose them is crazy! By the time you are diagnosed, years and years of the destructive effects of this disease has already taken a toll on your body. Just diagnosed does not equal just affected. Having to progress through the slow process of DMARD/Biologics/Steroid/Pain medicine until you finally reach a point where you can halfway function is cruel and uncaring most of the time. Folks with RA having been fighting this battle for decades. By now, something should have changed. Sometimes, I am more upset at the medical establishment and insurance companies than I am about having PsA. Please don't get me wrong, there are many great doctors and nurses out on the front lines who are wonderful caregivers and are compassionate. I do not refer to them but to the process at large.
Thanks for letting me rage against the storm. Rant over : ; - )
I understand exactly what you're saying. But not all psoriasis develops into PsA. That said, doctors have been becoming far more aware of the connection between the two, and are more likely to refer patients to a rheumy if they state that there is any joint involvement.
The issue is that so much of the start of these diseases is vague. And to make it more complicated, not everyone will progress at the same rate. I have heard of people being started on biologics almost immediately, yet I'm 5+ years in, and no biologic still.
People who are diagnosed fast are definitely the lucky ones, as they will be treated early and aggressively. For those people whose diagnosis is delayed, it's a much rougher path to travel.
The funny thing is, once you have one autoimmune disease, it means that you are more likely to develop other autoimmune diseases. It's probably the first diagnosis that is the toughest to make.
I developed Hasimotos at 19, then scalp psoriasis at 22 followed by really bad shoulder pain then a miscarriage. Few years later a probable auto immune stomach issue and just last week my endocrinologist told me that my early menopause (41) can also be an auto immune disease in itself!! They definitely go hand in hand.
I wasn't diagnosed with hypothyroidism until I was 34 or 35, and wasn't diagnosed with PsA until I was 36 ... and following that came the celiac diagnosis. I've had joint issues my entire life, and have been told everything from it's all in my head to it's growing pains.
Is Fibro a condition or a disease??... it seems to go hand in hand with PsA and osteoarthritis.--- i have all three... and all my discs in my lower back are bulging... no wonder I hurt.. right? lol I keep working thru it... it isnt the pain that I cant work thru.. it's the fatigue.. is the fatigue from the Fibro or the PsA.. ?? Would someone enlighten me?
I agree ! I had Graves' Disease - an auto-immune thyroid disease, psoriasis for 24 years and no derm or GP every mention Psoriatic Arthritis to me. If I had known about PsA, I wouldn't have wasted 18 months with 8 docs to get a PsA diagnosis.
Mine was the other way.. I did not want to admit I had it.. and both my first rheumy and my derm.. suspected it... but didnt have enough proof to diagnose... now im in bad shape... it shows you.. you have to take care of yourself..
I see that the major problem is that there are no actual test to diagnose PSA. Then there is such a variety of combinations of symptoms to go on which make it even more difficult. Most doctors are no longer prepared to diagnose without relying on test results as this is how it is these days. For this reason, many of us had a lot of difficulty getting a diagnoses and for me it took until it was visibly obvious and undeniable.
Approximately only 1 in 4 will develop PSA after Psoriasis. Some don't have Psoriasis and others can get PSA before Psoriasis. I am currently on a waiting list to see my second Endocriniologist as the first one diagnosed Hashimoto after eventually finding a multi nodular goitre This has progressed to Hyperthyroidism. Nothing was recommend on how I could have prevented this. I want the second opinion and used this to choose to go elsewhere..
The other problem I see is that Western Medicine separates the different parts of the body and diseases far too much and we have different specialists for different diseases and body parts and they rarely look at what symptoms could be related to one another even though they take down our medical history.
I believe the body should be treated much more holistically.
Not enough specialists communicate enough between one another or are willing to suggest to another specialist in a different field their suspicions. We probably need more doctors who would be prepared to specialize in diagnostics or for the different types of specialists to be more willing to discuss a patients symptoms and treatments with other treating specialists and our primary care doctors.
All I can do is make suggestions to my treating doctors.
I agree with you. Docs don't communicate well with each other or take a holistic view of the patient. bella said:
I see that the major problem is that there are no actual test to diagnose PSA. Then there is such a variety of combinations of symptoms to go on which make it even more difficult. Most doctors are no longer prepared to diagnose without relying on test results as this is how it is these days. For this reason, many of us had a lot of difficulty getting a diagnoses and for me it took until it was visibly obvious and undeniable.
Approximately only 1 in 4 will develop PSA after Psoriasis. Some don't have Psoriasis and others can get PSA before Psoriasis. I am currently on a waiting list to see my second Endocriniologist as the first one diagnosed Hashimoto after eventually finding a multi nodular goitre This has progressed to Hyperthyroidism. Nothing was recommend on how I could have prevented this. I want the second opinion and used this to choose to go elsewhere..
The other problem I see is that Western Medicine separates the different parts of the body and diseases far too much and we have different specialists for different diseases and body parts and they rarely look at what symptoms could be related to one another even though they take down our medical history.
I believe the body should be treated much more holistically.
Not enough specialists communicate enough between one another or are willing to suggest to another specialist in a different field their suspicions. We probably need more doctors who would be prepared to specialize in diagnostics or for the different types of specialists to be more willing to discuss a patients symptoms and treatments with other treating specialists and our primary care doctors.
All I can do is make suggestions to my treating doctors.
The insurance companies drive medical testing, diagnosis and treatment far to much. Each doctor you go to has a protocol to follow and they must exhaust this maze of testing and treatment before they can ever order the test you truly need to diagnose you. I walkeded in to my doctor(GP) and told him I wasn't going to quit coming to his office until we found out what my problem was. I paid for all the tesing and filed for reimbursement with the insurance company myself. Once the Xrays, MRI, and blood test confirmed inflammation, joint damage and a positive for RA then and only then would he request an appointment for me with the Rheumatologist. He thought I was someone addicted to pain killers requesting more drugs because I blew through his first prescription in less than a week. (Yes, the pain was that intense) He apologized and went the extra mile after that to help me. He showed me the insurance guide that he had to follow if he wanted to get paid for his work or the test he ordered. He expressed his anger over how the insurance companies dictated to him how he could care for his patients. I know everyone does not have the ability to pay for all of the diagnostic test up front like I did but without me bing able to do so it probably would have taken another year to get a diagnosis and a few more doctors.
Luckily for me, I got a the pick of the litter when I got my Rheumy. I thank God everyday for this guy and his PA Rhonda! He realized even though I had a positive RA factor, my active psoriasis, tendon and ligament involvement, and overall disease presentation was that of PsA. He took an hour to walk me through the disease and treatment. His practice even helped with extra pain meds when my mother-in-law passed away in China and I ended up out of the country for 6 months. Getting controlled drugs in and out of China is no easy task. lol Again, the process could do with an overhaul!
Even with the issues I had with the first rheum, at least she diagnosed me right away. I was a good patient and showed classic signs and symptoms, so maybe it was easier because of that. You know that little check list on the PsA info sites? I could check off all of that stuff. To me, it seems like even with rapid diagnosis, finding the right treatment and dosing has been the most frustrating. Just waiting for your drug to work can take months to years. It’s nuts. I know it’s not just me. I wish there were more docs who had a holistic approach to this condition and others like it. During the time when meds are being adjusted patients still have symptoms and need support. My primary doc has been an ANGEL throughout this. She has been my advocate, and hears me when I speak. I don’t know how I would have survived this without someone like her on my side. Now, I just have to find a rheum like her…
I totally agree it took me years of telling my doctors something is wrong, stating my symptoms and going to new doctor after new doctor. until one day I got a great family practitioner who had the bright Idea of testing me for inflammation in the body and sending me to a Rheumetologist. That is when I finally got some answers and now I am on high power NAIDS no biologic meds either.
Stoney said:
I understand exactly what you're saying. But not all psoriasis develops into PsA. That said, doctors have been becoming far more aware of the connection between the two, and are more likely to refer patients to a rheumy if they state that there is any joint involvement.
The issue is that so much of the start of these diseases is vague. And to make it more complicated, not everyone will progress at the same rate. I have heard of people being started on biologics almost immediately, yet I'm 5+ years in, and no biologic still.
People who are diagnosed fast are definitely the lucky ones, as they will be treated early and aggressively. For those people whose diagnosis is delayed, it's a much rougher path to travel.
The funny thing is, once you have one autoimmune disease, it means that you are more likely to develop other autoimmune diseases. It's probably the first diagnosis that is the toughest to make.
U know the worst thing. Why do we let the insurance companies decide whether they want us crippled or disabled??!! Why does it always revolve around money. What happened to compassion for our fellow man. I'm sure they take care of their own. What I mean is. If there is someone who works for the insurance company that has an autoimmune disease I bet they don't have to jump thru hoops to get the prescription they need