I have posted here several times but everytime i go to the doc i end up with a diff dx. now they are saying i have psoriatic arthritis fibro and ddd cervical spine. i havent worked in months and dont know if i will ever get better. I Dont know much about this form of arthritis anyone out there who can fill me in that would be great. I filed for disability in early nov am waiting for denial so i can get a lawyer involved anyone with any luck?
tonya
Psoriatic arthritis [PsA] is one of the diseases in the spondylitis family. These are arthritic conditions that can and do involve the spine. The Spondylitis Association of America has great info about PsA. Here is a link to their info about PsA:
http://www.spondylitis.org/about/psoriatic.aspx
http://www.spondylitis.org/about/psoriatic.aspx
CD, Ankylosing Spondylitis, connective tissue disease,
asthma, PAD, peripheral neuropathy
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Tonya,
Boy, what a time you've been having. Ducky has PA...I'm sure she'll be reading this later & can fill you in on some info and personal experience.
I'm so sorry with all you are going through.
It's one thing after another, after another, after another.
Sometimes, once we think WE'VE FINALLY GOT AHEAD OF OURSELVES. BAM! We're put back 10 steps. And to keep getting hit with one thing and then another...and ya don't know what the heck to think or who to believe!!!!!!!!! It's difficult. I know.
That was my life for a decade, and it has settled down a tiny bit (at least I know what I should be doing to treat the RA), but needless to say, of course....am hit with ANOTHER autoimmune disorder.
Tonya, sometimes with arthritis you get a whole cast of characters that come along with it that are related in one way or another. And it is hard for docs to figure out/diagnose and make sense of things.
Feels like sometimes it will never end and that NO ONE KNOWS what to do...and I know we all feel/have felt like that before.
There was a very recent post on PA, a very good one in fact.
Keep posting Tonya!! We're all here for you.
I applied in June for disability, and next week a decision will be made. (The anxiety is awful).
In our thoughts,
Erin
Hey Tonya -
Sorry to hear all you have been going through... I can sure relate... it took my doctors almost 2 years before the realized that I had PA (Psoriatic Arthritis)... I had numerous different diagnosis before then... go to this post:
http://www.healingwell.com/community/default.aspx?f=10&m=366892
It is a thread from SweatPea, she has a lot of the same problems that you have been recently diagnosed with, as well as lots of info on it that Erin and I posted. Like Erin said, I have PA and I am by no means an expert, but I know a fair bit about it... if you read that post, a lot of your questions may be answered. Good luck to you, and if you ever have any more questions, please let us know! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Hi Tonya,
Like Ducky I too have been Dx with PA. It is a very difficult disease. As you probably have found out it is one of many diseases that are affected by stress. Not just bad stress either. There are many options out there for treatment, the hard part is finding the one that works best for you. Not everyone responds the same way to each med. Take a look at all the different types of meds out there. There are holistic meds, relaxtion techniques, conventional meds and combo therapies. Keep searching until you find the one that works for you. Don't listen to what anyone else says!!!!!!! That is the best advice any of us can give you. We can arm you with all the knowledge you want but it is your body you have to listen to. Listen to it!!!!! You will know when you find what works for you. It may take months or years to find. Or like some of us here, it will be a constant battle of changing meds to get you to the place you want to be.
I have been battling this now for 8 years and through that time I have hit most of the major drug groups. Right now I am on Enbrel, plaquenil and mobicox when the inflammation is really bad. So far the combination is working really well. How long will it last? I don't know but I will accept whatever time I get and embrace it with all I have.
Life is too precious to let time that I feel good to slip by. You will get there too. Hang on!!! We are all here to help you along the way. Whatever support/knowledge you need we will help with to the best of our abilities. You are so welcome to keep joining us.
Thanks for being part of our healing group!!!
((HUGS)))
Oreo
Like Ducky I too have been Dx with PA. It is a very difficult disease. As you probably have found out it is one of many diseases that are affected by stress. Not just bad stress either. There are many options out there for treatment, the hard part is finding the one that works best for you. Not everyone responds the same way to each med. Take a look at all the different types of meds out there. There are holistic meds, relaxtion techniques, conventional meds and combo therapies. Keep searching until you find the one that works for you. Don't listen to what anyone else says!!!!!!! That is the best advice any of us can give you. We can arm you with all the knowledge you want but it is your body you have to listen to. Listen to it!!!!! You will know when you find what works for you. It may take months or years to find. Or like some of us here, it will be a constant battle of changing meds to get you to the place you want to be.
I have been battling this now for 8 years and through that time I have hit most of the major drug groups. Right now I am on Enbrel, plaquenil and mobicox when the inflammation is really bad. So far the combination is working really well. How long will it last? I don't know but I will accept whatever time I get and embrace it with all I have.
Life is too precious to let time that I feel good to slip by. You will get there too. Hang on!!! We are all here to help you along the way. Whatever support/knowledge you need we will help with to the best of our abilities. You are so welcome to keep joining us.
Thanks for being part of our healing group!!!
((HUGS)))
Oreo
God will never give us more then we can handle, I just wish that God didn't trust me so much.
Remember healing comes one step at a time, sometimes it seems that its two steps forward and one step back, but ultimately, always in a forward direction!!!
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Hi Tonya,
I also have PA and it's been a bit of a rollercoaster for me. I've had numerous problems with my health and body beyond just joints and psorisis. I've been told that a lot of my problems are due to the PA as it affects your whole body. I get sick too easily and once I have an area that is hurt (i.e., spleen, liver, bladder) in one form or another, I will continue to have problems with that area after the initial problem should be healed.
I'm on Plaqunil and will be starting one of 2 meds in January, either Enbrel or a new drug (still in testing phase.) I was on Remicade, but it broke my already poor immune system down to shreds after a while.
Good luck. I hope you find the help and support you need to find the right med combo you need to start feeling better.
**
Hi This is my first post, but I have been lurking around for a long time. I have a question about psoriatic arthritis. When you mention lesions on the scalp, I think I may have had this problem for along time, right now I am experiencing burning scabby (yuk) sores on my scalp. Cannot see them, but feel them, at first I thought I may have burned my head with the curling iron, but there are to many and they are scattered around. I have had this before it is usually on the top and sides of my head, once in awhile will be on my hairline and looks like a red rash. Many times when I color my hair it burns alot worse. When I put this together with the fact that I have beed dxed with fibro and OA, last year had a TKR, but my symptoms keep growing. The tests for Ra are negitive. Recently the pain in my hands and feet has been pretty severe, cannot stand or walk for any long period of time, and my hands hurt and feel like they are full of fluid or something, makes if difficult todo simple tasks. I am on celebrex for the OA as I need another TKR but say I am to young, 54. I know that fibro can be bad but this just feels different am going to my primary care tomorrow re pain in hands and feet. Does this sound like it could be PA, if so I will not beat around the bush with the Dr I will tell her I think I have a DX. Any info would help. Thanks.
Welcome JoyousD,
Definitely tell the doc your thoughts. They will take your arthritic conditions into considerations, but may look at superficial aggravaters at first like haircoloring, dye, etc....
But you may just be right!
Oreo and Ducky know a whole lot more about psoriatic arthritis than I, and their input will be much more helpful.
Would you get another TKR? If it is needed, why are the docs saying you are too young? Oh, what a mess eh? Well yo hang in there.
I wish you the best.
Erin
Hi JoyousD and welcome to Healing Well... It definitely sounds like you have PA, to me anyways... I have it in my feet and hands mainly...and my spine... I have it up to my knees too, but the major places I feel it is in my feet and hands...
http://www.healingwell.com/community/default.aspx?f=10&m=366892
I don't know if you read that post or not, but check it out, if a lot of it seems familiar to you, you probably have PA... when do you talk to the doc again? Are you being treated by a rheumy too? Best wishes to you and let us know how you are doing... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
http://www.healingwell.com/community/default.aspx?f=10&m=366892
I don't know if you read that post or not, but check it out, if a lot of it seems familiar to you, you probably have PA... when do you talk to the doc again? Are you being treated by a rheumy too? Best wishes to you and let us know how you are doing... - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Thanks so much for the replies, they helped alot. I saw my pcp yesterday and gave her all my symptoms and showed her the lesions on my head. She could not say for sure it is PA, so gave me more celebrex and I'm going to the Rhuemy next Friday. She also doubled my trazedone to 50mg so I do not wake up in the night because of pain. I didnot mention in my first post that I have a long list of aliments. Type II diabetic, OA, FM, ulcer, high BP and cholesteral, gerd, mitro valve prolapse, herniated discs in C-Spine, one partial KR and eventually will need both TKR, I have probably forgotten something but that should give you the gist of it. I am in sort of a hurry to get this recent pain problem under control as my husband and I are going to be in Florida for a month raoming around in our motor home with 3 other couples. I am hoping the weather will make a difference in how I feel as I am from PA and it has been very cold. I was asked about the KR, and yes I will have it done again. I want to wait as long as I can because they are making progress in new techniques so they do not have to cut so many muscles and recovery time is shorter. I am very thankful for this site and wish you all a Merry Christmas.
Joyous D-
I was just diagnosed with psoriatic arthritis, and have almost the same symtoms you describe. I am on this site now because I am having many more outbreaks, and they are on my arms as well as my scalp and ears (a few on my back and legs). I was on Olux- a foam, topical cortisone- for 4 weeks, even though the directions say use no more than 2 weeks. I just keep getting worse. My dermatologist and rheumatologist want me on Enbrel, but the cost and side affects discourage me. I have a rare bleeding disorder, and once needed an emergency hysterectomy and 21 blood transfusions when I went in for a D&C. My doctors are too flippant about saying, "That shouldn't be a problem." HA! They weren't the ones in ICU on a ventilator! The pain in my feet and hands is tolerable at the present time. (YES!!!!!) This psoriasis is very itchy and annoying!
Have you had any phototherapy? I have not. No one has mentioned it.
Going to FL should help! I am an elementary teacher, so am stuck in OH. (another concern about Enbrel- do I really want my resistance lowered more than it is, with all the germs I am around?)
Have a nice trip,
Nina3
I was just diagnosed with psoriatic arthritis, and have almost the same symtoms you describe. I am on this site now because I am having many more outbreaks, and they are on my arms as well as my scalp and ears (a few on my back and legs). I was on Olux- a foam, topical cortisone- for 4 weeks, even though the directions say use no more than 2 weeks. I just keep getting worse. My dermatologist and rheumatologist want me on Enbrel, but the cost and side affects discourage me. I have a rare bleeding disorder, and once needed an emergency hysterectomy and 21 blood transfusions when I went in for a D&C. My doctors are too flippant about saying, "That shouldn't be a problem." HA! They weren't the ones in ICU on a ventilator! The pain in my feet and hands is tolerable at the present time. (YES!!!!!) This psoriasis is very itchy and annoying!
Have you had any phototherapy? I have not. No one has mentioned it.
Going to FL should help! I am an elementary teacher, so am stuck in OH. (another concern about Enbrel- do I really want my resistance lowered more than it is, with all the germs I am around?)
Have a nice trip,
Nina3
Hey Nina3 - welcome to HealingWell! I had a lot of the same reservtions about Enbrel as you did. As long as you keep getting tested, you should be ok. The way my rheumy talked to me about it was this... Have you ever been on birth control? I said yes, for 7 years?! why? His reply... "Cause it causes cancer." Have you ever smoked? My reply, yes. why? "Cause it causes cancer, as well as increases the risk of cancer combined with b/c pills." Do you drink alcoholic beverages? And by then, I got it. It is scary when you hear LYMPHOMA, SEVERE BLOOD DISORDER... however, it is a precaution that they have to tell you about. It CAN happen, but it is RARE. Most people get to a point to were the pain is so bad that they weigh their options and through caution into the wind, and it turns out ok. I was one of those people.
My psoriasis used to cover my scalp, hairline torso and back. Now I only have one on my torso, none on my back and one each behind each ear. Up until a month ago, I didn't have any, and I think this winter weather is what has made it somewhat worse. But it is NO WHERE near how bad it was before.
The price is through the roof, do you have good insurance? Or maybe medicaid? Talk to your dermatologist/rheumy about temovate cream. It is a topical steriod and it helps my outbreaks. But of course it is only available by Rx.
If your pain is tolerable, you may be able to just use a NSAID and be all right. My pain started in my toes, and I took the gamut of NSAIDS, but all it did was keep spreading.
I have 3 kids and I am in the military, as well as work in my children's elementary school. I haven't gotten sick per se... like colds and stuff, but I am prone to UTIs, so when I get those, WHOA NELLY, they come on with a vengence. But that is the only thing I notice, oh yeah, and sinus infections, those get pretty wicked too.
Tanning helps me in the summertime... do you like to tan? I live by the beach, so it's easy for me to spend a lot of time in the sun, plus by nature of my job, I am out in the elements a lot. Or try a tanning booth. I know a lot of people with mild to moderate psoriasis go to tanning beds and it has helped them.
Good luck to you Nina3.. let us know what you decide! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
My psoriasis used to cover my scalp, hairline torso and back. Now I only have one on my torso, none on my back and one each behind each ear. Up until a month ago, I didn't have any, and I think this winter weather is what has made it somewhat worse. But it is NO WHERE near how bad it was before.
The price is through the roof, do you have good insurance? Or maybe medicaid? Talk to your dermatologist/rheumy about temovate cream. It is a topical steriod and it helps my outbreaks. But of course it is only available by Rx.
If your pain is tolerable, you may be able to just use a NSAID and be all right. My pain started in my toes, and I took the gamut of NSAIDS, but all it did was keep spreading.
I have 3 kids and I am in the military, as well as work in my children's elementary school. I haven't gotten sick per se... like colds and stuff, but I am prone to UTIs, so when I get those, WHOA NELLY, they come on with a vengence. But that is the only thing I notice, oh yeah, and sinus infections, those get pretty wicked too.
Tanning helps me in the summertime... do you like to tan? I live by the beach, so it's easy for me to spend a lot of time in the sun, plus by nature of my job, I am out in the elements a lot. Or try a tanning booth. I know a lot of people with mild to moderate psoriasis go to tanning beds and it has helped them.
Good luck to you Nina3.. let us know what you decide! - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant
Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
Current Meds - Enbrel/Prevacid/Synthroid
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
hi guys- can i jump in here? this month i was dx with fms, AND PA and now possibly AS. the rhuemy is lookingfor hla b 27 in my blood frankly i am scared about doing it cause do i really wanna know at this point isnt having pa enough?
i have it in my entire spine -and end plate vertrbre scerolsis- after my crash, it came on me like a freight train out of control now i cant get it to stop.
at this point i was wondering if i have AS how long does it take before iget the end stage of my entire spine being fused?
how does one live with this? it is awful. my mom had all her life psoraisis in her scalp but didnt get spine problems until her 60's. i am now 50 and have been in this connumdrum for 3 yrs as i believe my crash and ops brought it out. my brother has it also
failed neck surgery from T-bone crash was passenger and a drunk came out of a liquor store parking lot and hit us. neck fused at c-5-6-7 anterior and posterior. NS used my right hip bone to fuse my neck posterior and laminectomy, foraminotomy, anterior corpectomy (from c3-c7- a corpectomy is where they strip away the bone from the front vertrbre and put in donor cadaver bone, then two metal plates with 5 screws) posterior fusion with 6 more screws and two more metal plates that were put in too long for my neck and have to come out-NS goof up. left torn rotator cuff re-attached with two pins in shoulder, bilateral carpul tunnel, HNP T 7-8, 9-10- 11-12. HNP at L5-S1 and L2-3. mild chairi hindbrain herniation of 3mm. FMS, generalized seziure disorder from closed brain injury since my head hit the air bag at 45 mph and 3 cm mass in brain from 'head tongs' they used to hold 'head' in place for the posterior fusion, depression/aniexty (wonder why) childhood incest survivor. Just only won ssi hearing after waiting 2.5 years and 3 denials. taking norco, xanax, ambien, provigil etc. tried nearly every AD on the market with miserable side effects, awaiting blood tests by rhuemy doc to see if anything in my blood since i took 5 pints of blood with the posterior fusion-nerly died from that one.
failed neck surgery from T-bone crash was passenger and a drunk came out of a liquor store parking lot and hit us. neck fused at c-5-6-7 anterior and posterior. NS used my right hip bone to fuse my neck posterior and laminectomy, foraminotomy, anterior corpectomy (from c3-c7- a corpectomy is where they strip away the bone from the front vertrbre and put in donor cadaver bone, then two metal plates with 5 screws) posterior fusion with 6 more screws and two more metal plates that were put in too long for my neck and have to come out-NS goof up. left torn rotator cuff re-attached with two pins in shoulder, bilateral carpul tunnel, HNP T 7-8, 9-10- 11-12. HNP at L5-S1 and L2-3. mild chairi hindbrain herniation of 3mm. FMS, generalized seziure disorder from closed brain injury since my head hit the air bag at 45 mph and 3 cm mass in brain from 'head tongs' they used to hold 'head' in place for the posterior fusion, depression/aniexty (wonder why) childhood incest survivor. Just only won ssi hearing after waiting 2.5 years and 3 denials. taking norco, xanax, ambien, provigil etc. tried nearly every AD on the market with miserable side effects, awaiting blood tests by rhuemy doc to see if anything in my blood since i took 5 pints of blood with the posterior fusion-nerly died from that one.
Hi Missie, I'm bumping this back up so people w/your issues can respond.
I have PA as well and it's a pain in the youknowwhat. I"m sorry to hear all the problems you are expereiencing, a lot of us know that out of control freight train feeling.
Good luck.
**
i agree, "BUMP". thanks Camama.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.
Hi there !
I just started my third year on Enbrel and have had no side effects in all these years, none at all...thank goodness.
I need to be on it or I would be covered at least 75 percent with plaque p. I wonder if you all feel as consumed with your P as much as I do. Seems all i do is take care of my skin. I have such a routine of medicines and creams and then shots and well, it gets real old.
I am so glad that we have this new forum to talk. Thanks to all of you for being here.
Anne