Wow. There are people out there experiencing this disease. I felt so alone before I found this site. I’m newly diagnosed psoriatic arthritis. It’s in my spine and was diagnosed years after symptoms started. I’ve been to all kinds of doctors (except the right one). Wish I had a clue what was going on. My psoriasis was at the back of my scalp - just a little red patch. Derm said it was “stork bite”, regular doctor said is was excema. Orthopedic surgeon said it was osteoarthritis. So I’ve been fooled. I do have both psoriatic and osteo in my spine now, though. Painful and debilitating. Still I work full time. I think I’m starting Humira soon. Will it give me any relief from pain? I know it slows down the damage. Also, my MRI’s look like bad road maps. Wondered how much of the damage is from osteo and what damage is from the psoriatic? I’m 53 years old. I have slight scoliosis with significant spinal arthritis. Thanks for your help. (Scared and getting hopeless) Liberty
Hi there, Liberty! You raise an interesting question about psoriatic and osteo- arthritis. Who knows how much damage is the result of one or of the other? All I know is that there is some kind of interplay between them – the presence of one sets the stage for the other and away they go. Trouble is, I can’t remember which is the chicken and which is the egg. Maybe someone smarter that me here can clarify that.
I’m glad that you feel less alone having found this site. That’s a big part of the battle. Another part is educating yourself about this disease. Knowledge will give you some power to make good treatment decisions for yourself. In the “Book Reviews” section above, there is an excellent reference book written by two PsA specialists. I recommend it highly.
Take care!
Seenie
Seenie said:
Hi there, Liberty! You raise an interesting question about psoriatic and osteo- arthritis. Who knows how much damage is the result of one or of the other? All I know is that there is some kind of interplay between them -- the presence of one sets the stage for the other and away they go. Trouble is, I can't remember which is the chicken and which is the egg. Maybe someone smarter that me here can clarify that.
I'm glad that you feel less alone having found this site. That's a big part of the battle. Another part is educating yourself about this disease. Knowledge will give you some power to make good treatment decisions for yourself. In the "Book Reviews" section above, there is an excellent reference book written by two PsA specialists. I recommend it highly.
Take care!
Seenie
Thanks! Hope I sent this correctly.
Liberty said:
Seenie said:Hi there, Liberty! You raise an interesting question about psoriatic and osteo- arthritis. Who knows how much damage is the result of one or of the other? All I know is that there is some kind of interplay between them -- the presence of one sets the stage for the other and away they go. Trouble is, I can't remember which is the chicken and which is the egg. Maybe someone smarter that me here can clarify that.
I'm glad that you feel less alone having found this site. That's a big part of the battle. Another part is educating yourself about this disease. Knowledge will give you some power to make good treatment decisions for yourself. In the "Book Reviews" section above, there is an excellent reference book written by two PsA specialists. I recommend it highly.
Take care!
Seenie
Hi Welcome to the group. I'm sorry about the trouble you've had. Who would have thought there would be so many PsA patients to share with here right.
Sorry, you’re in so much pain. Hopefully, the humira will help with that. Are you taking anything for inflamation and pain? When do you start humira? Here’s hoping you find some relief soon. Keep us posted.
Thank you for responding. Sorry this reply is so late. I've only had one injection of Humira. My next one is this Tuesday. I have been on Metho for a month and Diclofenac. The only pain med I've had is an SI joint shot. I'm seeing the pain doctor next week to ask for something i can take when the pain is too much. My pain is that dull throbbing kind, mostly. But it's usually somewhere on my spine and lately SI joints. Also, I'm starting to get some in my legs which I don't understand. Can't believe the complexity of this disease.
Welcome, Liberty!
The beginning is quite confusing, and the struggle to find a doc who had the knowledge and is willing to share it is another tough one. Read the “Seenie Book” as I like I call it. You’ll get a lot of gooof info there that helps make this mess a whole lot more understandable.
Hurmira is a great drug, just give it time to work. Hopefully, it will be your match and you won’t have to try others before you feel relief. The biologics will help with pain caused by acute inflammation, but can’t help with pain resulting from damage they has already been done. I could go on, but there are so many good threads about that already. I am on vacation right now, but it you need help hunting for the info, I am happy to help you when I get back.
Welcome to this group. There’s a lot of excellent info and even more excellent support. I’m here for you if you need it.
Grumpy.
Thanks Grumpy Cat! I take it that the Seenie Book is up in the book review section? Have a great holiday. Liberty
Oh, and I never know what "joint damage" is. Is that evidence of arthritis on x-ray or more severe than that?
Welcome, Liberty!
I have PsA / Anklyosing Spondylitis (the AS part means fusions in my spine). Mine was diagnosed partially due to joint damage and partial fusions of my SI joints seen via x-ray.
Getting a med to help with pain while you wait for the Humira to do its thing will hopefully help a lot.
Seenie's book recommendation can be found in this thread: http://discussion.livingwithpsoriaticarthritis.org/forum/topics/book-reviews
Hi Liberty,
you said you weren't sure what joint damage was: well you can have damage occurring to the joints before it is visible on the xrays as well as swelling of the joints and fluid on the joints.
Maybe these links will help?
http://www.rheumatology.org/Practice/Clinical/Patients/Diseases_And_Conditions/Psoriatic_Arthritis/
http://www.mayoclinic.com/health/psoriatic-arthritis/DS00476/DSECTION=symptoms
Humira used to work pretty quickly for me but I still had to take an anti-inflammatory for pain.
Thank you Nym and Sunny. This site is so helpful. Nym, I think we have the same type of psa. I read your posts all the time and they are helpful. You've been through a lot and are so positive. Thank you for the answer, Sunny. I'll try those links. I know that I have swelling in my SI joints, I believe. I'm mad because the only symptom I had for years was pressure between my shoulder blades. Doc convinced me it was osteo. I wish I had not believed him - you would think a spine surgeon would know something. I didn't even know what rheumatologists were! My GP wouldn't have referred me to one because I was RA negative - and I guess, like me, he only thought there were two types of arthritis! (And I'm a smart lady - believe it or not!) Ahhhh, the good old days. Ignorance is bliss. But dangerous! Thank you all for outstanding advice. Here's to a cure!
Liberty, return sorry for the late reply, but yes the scene e-book is located under the book reviews and is called psoriatic arthritis: the fact. It’s an excellent book. I truly believe that knowledge is power when fighting this disease and this book has helped so many of us be able to communicate more effectively with our doctors. Hopefully, it will do the same for you. Now that you have found us, just remember that you are never alone. there will always be someone here with a supportive ear to bend. You are very welcome here and I look forward to getting to know you better.
Liberty said:
Thanks Grumpy Cat! I take it that the Seenie Book is up in the book review section? Have a great holiday. Liberty
Thanks. I ordered and read the book. You're right, it is very informative. Love your posts, Grumpy Cat. You're clever, funny, and brave!
Hello,
Welcome, great information here and wonderful people! ask away.
David
Thank you Sybil. I read your posts all the time. Very informative. You always educate me. I would say that it took about 2 1/2 years for my diagnosis from the start of my search to the actual diagnosis. But, looking back, I know that I had mild symptoms for awhile. So... I know that's not the longest time to wait for a diagnosis but it sure felt like it. I'm obsessed with the osteo vs PsA damage question because I just feel that my osteo went downhill in that 2 1/2 years. I just want to heal as much as possible. The triple whammy really hit me: delayed diagnosis with years of searching, diagnosis, meds. It was a lot to take at once when I never had real back issues before. I went into a deep depression at Christmas break. My mother's wrongful death a few months before my diagnosis was the beginning of the spiral down. I have faced so much tragedy in the past 3 years. Ex-husband's suicide, melanoma diagnosis (all clear now), niece's death, finally my mother's. All the deaths were violent accidents. But all my doctors and physical therapists chalked all my symptoms up to stress or osteo which delayed things even more. I knew and felt I had a rare thing wrong with me but I had no knowledge of who to go to for help. Wish I had just gone to Mayo Clinic. I'll never understand why Doctors miss this disease so much. Thanks for your kind words. Just looking for a new normal with as little pain as possible. Thanks for the note, David!
sybil said:
The interplay between OA and PsA comes up a lot and in my experience it foxes a lot of doctors. I tend to suspect that some doctors prefer to keep the two entirely separate and reject any interaction or connection just to keep things simple or to get the patient out the door. But then I have a nasty suspicious mind.
What seems increasingly clear to me from some great discussions on this site and the best rheumys I've seen is that the two conditions often go together and the presence of OA shouldn't be used as an excuse to play down the severity of PsA. I gather that if you have PsA and you have damage then the vital thing is to treat the PsA aggressively and there's not much point trying to untangle exactly which condition is to blame for what & when.
So sorry to hear that it took ages to diagnose PsA - that seems to happen so often. But glad that you are receiving treatment now and I hope it helps considerably.
Oh, Liberty … you’ve had so very much on your plate. I’m sorry, but I’m also glad that you sound like you are getting pro-active in your own care.
Stress, like OA, is a topic that comes up a lot here too. My own disease, which had (in retrospect) been simmering away undiagnosed for between 10 and 15 years, gathered speed and intensified during a very stressful period of my life. I suspect that the very thing that made my PsA go crazy was also something that hampered my diagnosis. Of course this woman was tired and sore and depressed and had pain in her feet: she was dealing with a nightmare eldercare situation, running herself ragged, and not looking after herself! Well, no doubt, that’s what my GP thought.
The longer I’m here, the more I realize how very complex this disease is. I hope the treatment you’re getting gives you some relief!
Hello Liberty
Im so sorry to hear about what you had to endure, lets hope to get your health on track and cope with this PSA nonsense we all have. Nice to meet you!
David
Liberty said:
Thank you Sybil. I read your posts all the time. Very informative. You always educate me. I would say that it took about 2 1/2 years for my diagnosis from the start of my search to the actual diagnosis. But, looking back, I know that I had mild symptoms for awhile. So... I know that's not the longest time to wait for a diagnosis but it sure felt like it. I'm obsessed with the osteo vs PsA damage question because I just feel that my osteo went downhill in that 2 1/2 years. I just want to heal as much as possible. The triple whammy really hit me: delayed diagnosis with years of searching, diagnosis, meds. It was a lot to take at once when I never had real back issues before. I went into a deep depression at Christmas break. My mother's wrongful death a few months before my diagnosis was the beginning of the spiral down. I have faced so much tragedy in the past 3 years. Ex-husband's suicide, melanoma diagnosis (all clear now), niece's death, finally my mother's. All the deaths were violent accidents. But all my doctors and physical therapists chalked all my symptoms up to stress or osteo which delayed things even more. I knew and felt I had a rare thing wrong with me but I had no knowledge of who to go to for help. Wish I had just gone to Mayo Clinic. I'll never understand why Doctors miss this disease so much. Thanks for your kind words. Just looking for a new normal with as little pain as possible. Thanks for the note, David!
sybil said:The interplay between OA and PsA comes up a lot and in my experience it foxes a lot of doctors. I tend to suspect that some doctors prefer to keep the two entirely separate and reject any interaction or connection just to keep things simple or to get the patient out the door. But then I have a nasty suspicious mind.
What seems increasingly clear to me from some great discussions on this site and the best rheumys I've seen is that the two conditions often go together and the presence of OA shouldn't be used as an excuse to play down the severity of PsA. I gather that if you have PsA and you have damage then the vital thing is to treat the PsA aggressively and there's not much point trying to untangle exactly which condition is to blame for what & when.
So sorry to hear that it took ages to diagnose PsA - that seems to happen so often. But glad that you are receiving treatment now and I hope it helps considerably.