Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 At 03:28 PM 2/22/03 +0000, you wrote: >I would like to know what tests are run to determine whether you >have PA or just " plain ole " osteoarthritis. I'm new to the list, and to PA, so I could be way off here, but... I'd be very surprised if OA were misdiagnosed as PA. OA is a degenerative form of arthritis and doesn't behave in the same way as PA at all. If PA were to be confused with any other form of arthritis, I'd probably be rheumatoid, because they're both inflammatory forms of arthritis. Since you say you have swollen joints and psoriasis, I imagine that your doctor has run tests to rule out RA (there is a blood test for RA) and has determined it to be PA instead. >I have had psoriasis for >a long time on my scalp and in my genital area, but have just >developed the ongoing pain in my hands and wrists. It has also >started to spread to my shoulder joints. I've also struggled with >fatigue for quite a while but my family doctor just blames it on >perimenopause. Sometimes my legs are so weak I can hardly walk >through the house. Have you ever had really bad swelling in your knee joints? I have very weak legs too, but it's because my knees were so swollen at one point that my leg muscles were affected. Just a thought. But if it's nothing like that, then perhaps it's just an unrelated health problem, like perimenopause? I don't know. I have fatigue too, which is quite normal when you're fighting so much inflammation with PA, but the weak legs are curious. >It's hard to explain to my husband, it's nothing >you can see (other than the swollen hands & wrists). Everyone you >mention it to, says " big deal, I have arthritis too. Suck it up and >go on with your life. " Well, I do, but I'd like to know that all the >symptoms I have are all related (I truly believe they are!)and >something can be done. Unfortunately, I've noticed that a lot of people just don't have any sympathy for my situation unless I'm very obviously showing serious physical signs of pain or swelling. Like when my knees were so swollen that I could barely walk, then people were really sweet about it. But generally, they just don't understand: if I look fairly " normal " and healthy, then they seem to think I'm just complaining about nothing. It might help you to take your husband with you to your doctor to have the doctor explain that arthritis pain can be very severe and debilitating, even when it's " invisible " to the naked eye. Maybe he would be more sympathetic. It reminds me of before my mom and I were both diagnosed with sleep apnea. We were so incredibly exhausted and no one understood at all. Then finally my mom took my dad with her to one of her appointments, and the doctor told my dad he didn't know how my mom had functioned at all before getting treated for sleep apnea, because she would literally have been like the " walking dead " . Then my dad finally got it. Sometimes they just have to hear it from another source before they really mentally understand. They will never totally understand the pain unless they feel it for themselves, but at least they could intellectually get a better grasp on what you're going through. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Visit my personal web site at http://members.shaw.ca/tljohnson/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2003 Report Share Posted February 22, 2003 I was diagnosed when my gp sent me to the foot and ankle clinic. I had had a bad fall a few months before and was convinced that the pain in my foot was somehow related to that fall because it was below the knee that was so deeply skinned. As we were getting acquainted I mentioned that I had psoriasis, he took one look at my nails (which only had slight damage) and declared that I had PA and sent me back to my gp who agreed completely and began an agressive treatment plan. They did not do more than the standard blood tests which didn't show much that was unusual at the time. My sed rate is a little above normal but not much. However, I sure do have the sausage digits and involvement that is not usual to other types of arthritis i.e. jaw and chest involvement. I am very grateful to both of these docs as they took me seriously right from the beginning. I hope you are fortunate enough to find such good physicians. Good Luck, Cheri [ ] Diagnosing PA I would like to know what tests are run to determine whether you have PA or just " plain ole " osteoarthritis. I have had psoriasis for a long time on my scalp and in my genital area, but have just developed the ongoing pain in my hands and wrists. It has also started to spread to my shoulder joints. I've also struggled with fatigue for quite a while but my family doctor just blames it on perimenopause. Sometimes my legs are so weak I can hardly walk through the house. It's hard to explain to my husband, it's nothing you can see (other than the swollen hands & wrists). Everyone you mention it to, says " big deal, I have arthritis too. Suck it up and go on with your life. " Well, I do, but I'd like to know that all the symptoms I have are all related (I truly believe they are!)and something can be done. Sorry for rambling, but sometimes I get frustrated.Thanks for listening! God Bless. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 Verabusy, etc. I hope you don't listen to everyone who says " Suck it up " . PA isn't always diagnostic with specific tests, but your symptoms sound very familiar. You probably have the symetrical sort [affects often hands, feet, wrists, shoulders, etc. on both sides of the body] It hurts a " LOT " ...and fatigue, exhaustion is a companion. But if your doctor hasn't tried some things...look on the net and you'll find common treatments, some help a lot, some don't...it varies by patient..but you need to get some help before your " sausage " fingers become misshapen. It can look a lot like RA...no panic, but insist that he get serious or get another doctor. Sometimes a rheumatogist can not be up to par ... or skeptical of a diag. of PA...even good ones. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2003 Report Share Posted February 23, 2003 I have had p for many years and in the past my doctors thought I had osteoarthritis due to minimal joint pain. In the last year or so I developed pitting of the nails and most of my joints are now painful and involved. My fingers have also just deleloped some deformities of the last digits. Now they say I definitely have PA. I wish someone else could also clarify how they tell the difference. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 24, 2003 Report Share Posted February 24, 2003 For whatever its worth, the pitting in my nails started a good year before the pain for me. And I had trouble with my eyes 5 years before any pain. Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 At 10:42 PM 2/24/03 -0500, wrote: >And I had trouble with my eyes 5 years before any pain. What kind of trouble with your eyes? I've read before about eye problems and PA, but never anything specific about what the eye problems are. I'm having some weird problems with my eyes lately, so I'm curious... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Visit my personal web site at http://members.shaw.ca/tljohnson/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 I only have 1 nail pitted, and it came 5 years after the pain. (very recent actually) My eyes have never given me trouble. In a message dated 2/24/2003 10:42:19 PM Eastern Standard Time, rachelviognier writes: > For whatever its worth, the pitting in my nails started a good year before > the pain for me. And I had trouble with my eyes 5 years > before any pain. > Hope that helps. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 , the name the opthamologist gave at the time is vernal conjunctivitis...basically, you have lesions on your eyes and impaired visibility. It can be cleared up with steroid drops. At the time, my p was in remission and I had no signs of pa so it was just considered something very odd. Since pa was diagnosed, my rheumatologist said its not uncommon to have this kind of conjunctivitis in connection with pa. Haven't had the conjunctivitis since, but I have very dry eyes, which are also common with autoimmune arthritis. The eye doctor has me using Refresh Endura drops 4 times a day, that has helped. What kind of trouble are you having with your eyes? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 In a message dated 2/25/2003 9:01:41 PM Eastern Standard Time, rachelviognier writes: > Haven't had the > conjunctivitis since, but I have very dry eyes, which are > also common with > autoimmune arthritis. I never realized that this goes hand in hand with arthtitis. I always had problems with my contact lenses because of dry eyes and never knew why. Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 My primary care doctor sent me to an opthamologist who specializes in autoimmune diseases...I guess eye stuff is more common than I thoughts. There is a definite correlation between eye problems and autoimmune arthritis, as well as thyroid problems. The opthamologist gave me a run down of things that are considered mildly irritating vs symptoms of something more serious...inflammation and redness she counted as symptoms of something more serious. She explained why but I can't remember...Hope that helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Thanks for the info about the eyes. Fascinating. That explains a lot of things re: contact lenses in particular, as someone else also mentioned. At 09:01 PM 2/25/03 -0500, you wrote: >What kind of trouble are you having with your eyes? Well... I don't know how to explain it. I do have the sensitivity to bright lights that the info I read on vernal conjunctivitis mentions, but apart from that it's something really difficult to describe. Basically I just feel sometimes like my eyes are really working hard to stay in focus. I never lose focus and things don't go blurry or anything, but it's just like I can feel this strain. And it's not a strain that is particular to reading vs. driving or anything that could be attributed easily to a change in my prescription -- it's just a general strain that comes and goes. It's quite odd! ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Visit my personal web site at http://members.shaw.ca/tljohnson/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 I finally got a letter in the mail that my first appt with a Rheumatologist is on the 14th of Aug. I was told that when they look for PA they look at your finger nails for vertical lines and pitting is that correct? (maybe someone else in the group can answer this) I have both the lines and pitting and also many of my finger and toe nails are detatched from the nailbeds. Anyway I hope your appt goes well. [Editor's Note: One of the classic symptoms of Psoriasis is pitting of the nails so that is something which steers towards a diagnosis of PA. HOWEVER, not everyone with psoriasis has pitting of the nails so in and of itself, it is not conclusive. I was diagnosed with RA for decades because I had no P and then my nails became pitted and the rheumy altered the diagnosis. Good luck on YOUR appointment. Please fill us in afterwards and let us know if you have any questions leading up to then. Kathy F.] At 12:29 PM 7/27/2006, you wrote: >Hi, > >I'm going to the Rheum for the first time tomorrow, but I wondered >how they actually diagnose PA? I've read that it doesn't tend to >show on X-Rays or in blood tests, like Rheumatoid Arthritis does. So >is it strictly by pocess of elimination, and presence of symptoms and >presence of Psoriasis? > >I'm mainly just wondering what to expect tomorrow. I am in need of >answers as I've been hurting long enough. My pain is mostly in my >back (all areas lower to neck) my hips, knees (You can actually hear >them grind when I'm walking up and down steps), ankles and feet. My >wrists and fingers bother me too, but not as constantly as the other >areas. Oh, and my rear-end hurts....isn't that weird? Its like >radiating muscle pain, hard to describe. When I get up in the >mornings, I feel about 100 years old. My legs and back KILL me and >my feet are so stiff and cramped up that I have to very gently and >slowly put weight on them so they flatten back out. After I have a >warm shower, I'm able to function at least. > >I have IBS and when I have an attack, my back feels like it is going >to snap in two. The IBS attacks also send pain down my butt, hips >and legs. > >I really feel like I'm too young to feel this old. What should I >expect from the rheum. > > > >[Editor's Note: , PA is usually diagnosed clinically by ruling >out Osteoarthritis (blood aspiration test, bone density test, etc.). >There is no test for PA, per se, so your rheumy will add up your >history, the presence of P, the morning stiffness, the sore joints, >etc. There is no magic wand - rather, things taken together will >lead (or not lead) to a diagnosis of PA. Assuming you are given a >diagnosis of PA, you should then discuss your treatment options (and >there are many). No two body chemistries are alike so no two people >react quite the same way to a medication. There are MANY medications >available now to help us. Some help a little. Some are life-changing >and some don't work - it's trial and error and what works for me may >not work for you. Your rheumy will also be mindful of your health >insurance protocol. Some will require you to go on certain meds and >fail before authorizing you to be put on more expensive medications. >Let's take this one step at a time and see what sort of diagnosis >you get. I hope you have picked a rheumy who is very familiar with >PA. Kathy F.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 I was diagnosed with PA in 2002. My left middle finger is twisted now after it swelled up to about 3 times its size and was VERY painful, my right hand has two fingers that are abnormally large at all times, and I can no longer make a fist with either hand. My feet are in the same condition along with both ankles. I Do have psoriasis all over, although it is not as bad as it once was. I have found the best RX for the skin is Ultravate. It is an ointment, and it worls miracles!! At least it does for me!! It is worth its weight in Gold and then some!!! As of right now I am going through disability proceedings because I can no longer stand or walk for long periods of time without being in a great deal of pain. I take tramadol for pain but it only takes the edge off. I work part time in a fast food resturaunt because I am a single mom of 2 girls. When I first began to have problems I went to the doctor and they took x-rays and it showed alot of tissue swelling, but he didnt know what was causing it. I went to a Rhuematologist and she diagnosed me with PA...The treatments she had me on did not help. I was eventually sent to pain management and was put on 2 narcotic pain meds. I was essentially an invalid and had to use a wheelchair or walker to get around. In May of 2004 the doctors told me to go ahead and start the paper work on an electric wheel chair, due to my disease had progressed to the point of no return. I refused to beleive I would never walk again as they predicted I would not be capable of doing within 6 months of that time. I am happy to report I have proved them wrong. Not only can I still walk, but without the aid of a wheelchair or walker or even a cane!! I have stopped taking allt he medications they had me on, lost over 100lbs. And I am now able to work some, and lead pretty much a normal life, although I do still have bad days. And the pain is still pretty bad at times. Most people cannot tell there is anything wrong with me now. But I can tell. > > I finally got a letter in the mail that my first appt with a > Rheumatologist is on the 14th of Aug. I was told that when they look > for PA they look at your finger nails for vertical lines and pitting > is that correct? (maybe someone else in the group can answer this) I > have both the lines and pitting and also many of my finger and toe > nails are detatched from the nailbeds. Anyway I hope your appt goes well. > > > > [Editor's Note: One of the classic symptoms of Psoriasis is pitting of the nails so that is something which steers towards a diagnosis of PA. HOWEVER, not everyone with psoriasis has pitting of the nails so in and of itself, it is not conclusive. I was diagnosed with RA for decades because I had no P and then my nails became pitted and the rheumy altered the diagnosis. Good luck on YOUR appointment. Please fill us in afterwards and let us know if you have any questions leading up to then. Kathy F.] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 ....we are ALL to young for this crap...and too nice and too talented and too active and too smart. PA is not good but some of us have allowed it to teach us good things. Stick with us kiddo and you'll learn alot about your disease if you are diagnosed and about your character and your strengths. What you have read is true...it does not have to show up in x rays or blood work. If it does not show up in your x rays that's a good thing...no or minimal damage. So you'll need meds to keep it from progressing to the point where you DO have damage. Don't think that you can get away with not treating it if you see no damage thus far. I only had some Psoriasis and aching stiff hands and fingers when I was formally diagnosed 3.5 years ago and then this past Feb woke up with it in my hips and spine and could not walk for 4 months before getting on Enbrel. A month or so later I was out getting a job to replace the one I lost when I could not walk and now I am selling cars...running all over the lot...known as the Spaz at work now. Worked 11 hours today and will do that again tomorrow. I could not stand for 11 minutes a short while ago. I took Plaquinel when I was first diagnosed and I believe it has helped to slow the progression of the disease as my damage is still minimal even with the trouble I have had. Your symptoms sound exactly like mine now....I tell people I have Arthritis of the Butt. lol. I don't have the IBS thank God. But before Enbrel, I creaked and grinded when I walked...knees, feet...just like you. Mornings were tough. I had to set the alarm and take a pain pill (Ultracet is the one that finally worked for me and does not make me so loopy I cannot function) and then reset the alarm so I'd wake up an hour later. I did everything at night....set the coffee pot up, layed out my clothes, shaved legs etc....things I could not do in the morning. It's better now. I hope your Rheumy is someone that you will be comfortable with. Remember that you are paying him/her....you are the boss. If you don't feel at ease around this doctor....get another one. This doctor will be a big part of your life so this is important. There are a number of symptoms to consider...do not leave anything out....past illnesses, eye problems (infections...repeated pink eye or " allergy eyes " too), rashes, your mental state and ability to remember things or stay focused, any history of TMJ....tell it all. There are many pieces to the puzzle of PA. Best wishes to you. I'll look forward to hearing how it went. -Betz > > Hi, > > I'm going to the Rheum for the first time tomorrow, but I wondered > how they actually diagnose PA? I've read that it doesn't tend to > show on X-Rays or in blood tests, like Rheumatoid Arthritis does. So > is it strictly by pocess of elimination, and presence of symptoms and > presence of Psoriasis? > > I'm mainly just wondering what to expect tomorrow. I am in need of > answers as I've been hurting long enough. My pain is mostly in my > back (all areas lower to neck) my hips, knees (You can actually hear > them grind when I'm walking up and down steps), ankles and feet. My > wrists and fingers bother me too, but not as constantly as the other > areas. Oh, and my rear-end hurts....isn't that weird? Its like > radiating muscle pain, hard to describe. When I get up in the > mornings, I feel about 100 years old. My legs and back KILL me and > my feet are so stiff and cramped up that I have to very gently and > slowly put weight on them so they flatten back out. After I have a > warm shower, I'm able to function at least. > > I have IBS and when I have an attack, my back feels like it is going > to snap in two. The IBS attacks also send pain down my butt, hips > and legs. > > I really feel like I'm too young to feel this old. What should I > expect from the rheum. > > > > [Editor's Note: , PA is usually diagnosed clinically by ruling out Osteoarthritis (blood aspiration test, bone density test, etc.). There is no test for PA, per se, so your rheumy will add up your history, the presence of P, the morning stiffness, the sore joints, etc. There is no magic wand - rather, things taken together will lead (or not lead) to a diagnosis of PA. Assuming you are given a diagnosis of PA, you should then discuss your treatment options (and there are many). No two body chemistries are alike so no two people react quite the same way to a medication. There are MANY medications available now to help us. Some help a little. Some are life-changing and some don't work - it's trial and error and what works for me may not work for you. Your rheumy will also be mindful of your health insurance protocol. Some will require you to go on certain meds and fail before authorizing you to be put on more expensive medications. Let's take this one step at a time and see what sort of diagnosis you get. I hope you have picked a rheumy who is very familiar with PA. Kathy F.] > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Yes they do look at your fingernails and in between your toes. I had to put on a hospital gown and she looked me over and that is when she asked me about the psorisis that is on my elbows and in between my ring finger. I have had xrays and yes that is what showed up was inflamation. That's it!! Isn't that crazy? This is such a weird illness isn't it? It is so crazy for me and I am just adjusting to it. I might be able to walk freely into work one day and Lord and behold I might need a cane the next. I just laugh about it now. I have to and it does bring light to the situation. Please let us know how things go we are looking forward in hearing from you. Oh I didn't mention that I do have pitted toe nails on my big toes, but the weird thing is that the horzontial line is grown out just about and it is almost all cleared up. Now it I have another flair you just watch and see it totally reeks havoc on me. Let us all now we care and will be waiting for some news. Have a great day! Tammy Shaun <twohearts1977@...> wrote: for PA they look at your finger nails for vertical lines and pitting is that correct? (maybe someone else in the group can answer this) I Yup that sounds about right... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2006 Report Share Posted July 27, 2006 Hi and Barb. Yes, they do, but it doesn't always effect the nails, mine are ok so far, but I still have the PA, Take care Jeanette Re: [ ] Diagnosing PA for PA they look at your finger nails for vertical lines and pitting is that correct? (maybe someone else in the group can answer this) I Yup that sounds about right... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 In a message dated 7/28/2006 4:28:57 P.M. Eastern Standard Time, radiomark@... writes: According to my rheumy, psoriatic spondylitis responds to Humira better than Enbrel. He contacted my dermatologist and GP and told me he would take over from here. By the way, another lovely side effect of spondylitis is osteopenia/osteoporosisside effect of s significant bone mass over the past four years. I should have gone in each year for the past four years for x-rays and didn't. After what I was initially told, I figured that I didn't and wouldn't have future joint damage....wrong! Mark, I also have spondylitis. I just got the results of a DEXA scan for bone density. The doc said " You have very dense bones, except for one little spot on your hip. " He called it osteopenia and is putting me on Fosomax. This won't fix the existing problem but it will keep it from getting worse. I was showing osteopenia five years ago and it's gotten a bit worse but not to the point where he wants to call it osteoporosis. I'm currently off all PA meds. Supposedly I'm in remission. It's nice to know that Humira is better for spondylitis than Enbrel. I'll keep that fact in mind. One more thing I learned when I was with the doc. It is extremely important that if we are taking MTX that we take our Folic Acid. That's not just brain fog we're experiencing but brain damage. This is reversible damage that corrects itself when we stop the MTX and/or start up Folic Acid. He also said that Folate is better absorbed by our bodies than plain Folic Acid. Just thought I'd share. Sandy swOhio Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2006 Report Share Posted July 28, 2006 I feel your frustration. Four years ago I went to two different rheumies who told me I didn't have arthritis? Why? I had no sed rate. I had no signs of joint damage. I had no sausage fingers or toes. Therefore, they surmised, no arthritis. I saw my first rheumy complaining of pain in my hands and feet, soft tissue swelling in my hands and tendonitis in both elbows. The first rheumy told me I was just getting older and this stuff happens. I was 46. I went to another rheumy. My second rheumy checked for sed rate and since I had none, that meant I didn't have RA. Since he saw no bone damage, he wouldn't diagnose the PA, even though I continued to complain of tendonitis, hand and feet pain and soft tissue inflammation in my hands. He agreed that I had inflammation in my hands and put me on Celebrex, but no diagnosis for PA. What you need to know about PA is that the quick and easy way for a rheumy to diagnose PA is to see the following: 1) pitted nails or nails with ridges 2) psoriasis accompanied with joint damage in x-rays 3) sausage fingers or toes If the average rheumy doesn't see these things, a diagnosis for PA may not occur. Other symptoms for PA include: 1) tendonitis 2) iritis/uveitis 3) soft tissue swelling 4) fatigue The fact that I had soft tissue swelling, fatigue and tendonitis didn't seem to be enough for my rheumis do diagnose me with PA. After a few months on Celebrex, I went back to my GP who agreed to put me on methotrexate for the severe P and to see if that would help my PA symptoms. The methotrexate helped a lot, but I felt really fatigued all the time and I developed non-stop cluster headaches. Because of the fatigue and headaches, my GP put me on amytriptolene. This killed the headaches, helped the fatigue a lot, but turned me into a walking zombie with greatly diminished cognitive ability, i.e., brain fog. This doesn't help when you're in sales & marketing and need to think clearly. I dumped the amytriptolene and the methotrexate and went to see my dermatologist after I had a massive flairup of my psoriasis after getting off the methotrexate (there's a nice side-effect for you). My dermatologist put me on Enbrel for the psoriasis. Magically, the tendonitis, and much of the pain went away, along with the psoriasis. Over the past year, my symptoms became worse, with more pain and problems in my back. I went back to the 2nd rheumy who diagnosed me with Psoriatic Spondylitis after I explained to him how much improvement I saw with the Enbrel from my dermatologist, and after he saw that the cartilage is now all but non-existent in my sacroiliac joint. He said that one way of diagnosing PA is to try treatment medications and see if they help. I had to hear that four years after the fact. What's interesting with the Spondylitis is that the sypmptoms in joints other than your back, are more peripheral. That's why all this time, I have and continue to have no joint damage anywhere other than my back. I have no sausauge digits. I have no pitted nails. I get sore knees, severe pain in my ankles, tendonitis in my elbows and wrist and pain in my feet and hips....but no joint damage there. So....when a doctor tells you that you don't have PA, just because he can't see joint damage, don't start feeling like you're an idiot, because you're not. In my first set of x-rays four years ago, my rheumy said there was no joint damage anywhere. Had it not been for my dermatologist, my back would probably be in worse shape than it is now. Now, that my rheumy is finally able to recognize that I have PA and was able to diagnose the spondylitis, he's involved in my treatment. According to my rheumy, psoriatic spondylitis responds to Humira better than Enbrel. He contacted my dermatologist and GP and told me he would take over from here. By the way, another lovely side effect of spondylitis is osteopenia/osteoperosis. I've also lost significant bone mass over the past four years. I should have gone in each year for the past four years for x-rays and didn't. After what I was initially told, I figured that I didn't and wouldn't have future joint damage....wrong! The symptoms I hear from you sound a lot like PA to me. Your symptoms and pains are real. Do your darndest to stay on top of this and your doctors! I understand your frustration. Good luck - Mark > > I would like to know what tests are run to determine whether you > have PA or just " plain ole " osteoarthritis. I have had psoriasis for > a long time on my scalp and in my genital area, but have just > developed the ongoing pain in my hands and wrists. It has also > started to spread to my shoulder joints. I've also struggled with > fatigue for quite a while but my family doctor just blames it on > perimenopause. Sometimes my legs are so weak I can hardly walk > through the house. It's hard to explain to my husband, it's nothing > you can see (other than the swollen hands & wrists). Everyone you > mention it to, says " big deal, I have arthritis too. Suck it up and > go on with your life. " Well, I do, but I'd like to know that all the > symptoms I have are all related (I truly believe they are!)and > something can be done. Sorry for rambling, but sometimes I get > frustrated.Thanks for listening! God Bless. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2006 Report Share Posted August 1, 2006 Mark, you mentioned a bone density scan... you have peaked my curiosity. Is this something used to determine how advanced things are... ie. i have a baseline xrays if i do the bone density scan and then know kinda where you stand as far as advancement etc... just curious.... On 7/29/06, verkhoturye <radiomark@...> wrote: > > Thanks Sandy, > > I still don't have the results back from the bone density scan. I was > told by a radiologist that I had moderate osteopenia, but my rheumy > said that a standard chest x-ray is not that conclusive. I hope it's > not too bad. > > Thanks > > Mark > > > > > > > > > In a message dated 7/28/2006 4:28:57 P.M. Eastern Standard Time, > > radiomark@... writes: > > > > According to my rheumy, psoriatic spondylitis responds to > > Humira better than Enbrel. He contacted my dermatologist and GP and > > told me he would take over from here. By the way, another lovely > > side effect of spondylitis is osteopenia/osteoporosisside effect of s > > significant bone mass over the past four years. I should have gone in > > each year for the past four years for x-rays and didn't. After what I > > was initially told, I figured that I didn't and wouldn't have future > > joint damage....wrong! > > > > > > > > Mark, > > I also have spondylitis. > > I just got the results of a DEXA scan for bone density. The doc > said " You > > have very dense bones, except for one little spot on your hip. " He > called it > > osteopenia and is putting me on Fosomax. This won't fix the > existing problem > > but it will keep it from getting worse. I was showing osteopenia > five years > > ago and it's gotten a bit worse but not to the point where he wants > to call > > it osteoporosis. > > > > I'm currently off all PA meds. Supposedly I'm in remission. It's > nice to > > know that Humira is better for spondylitis than Enbrel. I'll keep > that fact > > in mind. > > > > One more thing I learned when I was with the doc. It is extremely > important > > that if we are taking MTX that we take our Folic Acid. That's not > just > > brain fog we're experiencing but brain damage. This is reversible > damage that > > corrects itself when we stop the MTX and/or start up Folic Acid. He > also said > > that Folate is better absorbed by our bodies than plain Folic Acid. > > > > Just thought I'd share. > > > > Sandy swOhio > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Hi Sandy, My understanding is that a bone density scan will indicate the severity of any osteoperosis/osteponia which would represent a loss of bone mass. The less the mass, the more prone you are to fracturing. Where I have psoriatic spondylitis, the doctors want to make sure that if I do have advancing osteoperosis, that they can slow it down or stop it completely, so I can better avoid getting cracked vertebrae. I've read that there is another test which they can do which is a nuclear test simply called a bone scan. In this test, they can actually see where PA is concentrating its destructive properties. It will show up on the imaging as dark black spots which will help you see where the damage is occuring: http://www.webmd.com/hw/health_guide_atoz/hw200283.asp I hope this is helpful. Regards, Mark > > > > > > > > > In a message dated 7/28/2006 4:28:57 P.M. Eastern Standard Time, > > > radiomark@ writes: > > > > > > According to my rheumy, psoriatic spondylitis responds to > > > Humira better than Enbrel. He contacted my dermatologist and GP and > > > told me he would take over from here. By the way, another lovely > > > side effect of spondylitis is osteopenia/osteoporosisside effect of s > > > significant bone mass over the past four years. I should have gone in > > > each year for the past four years for x-rays and didn't. After what I > > > was initially told, I figured that I didn't and wouldn't have future > > > joint damage....wrong! > > > > > > > > > > > > Mark, > > > I also have spondylitis. > > > I just got the results of a DEXA scan for bone density. The doc > > said " You > > > have very dense bones, except for one little spot on your hip. " He > > called it > > > osteopenia and is putting me on Fosomax. This won't fix the > > existing problem > > > but it will keep it from getting worse. I was showing osteopenia > > five years > > > ago and it's gotten a bit worse but not to the point where he wants > > to call > > > it osteoporosis. > > > > > > I'm currently off all PA meds. Supposedly I'm in remission. It's > > nice to > > > know that Humira is better for spondylitis than Enbrel. I'll keep > > that fact > > > in mind. > > > > > > One more thing I learned when I was with the doc. It is extremely > > important > > > that if we are taking MTX that we take our Folic Acid. That's not > > just > > > brain fog we're experiencing but brain damage. This is reversible > > damage that > > > corrects itself when we stop the MTX and/or start up Folic Acid. He > > also said > > > that Folate is better absorbed by our bodies than plain Folic Acid. > > > > > > Just thought I'd share. > > > > > > Sandy swOhio > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Can someone please define " pitting in the nails " for me? I am not sure WHAT this means...Are they LINES or what? I have deep grooves in my nails (most Vertical but one just developed a horizontal one) and I also have what appear to be SCALES under a couple of my nails (thumbs..)... No doctor has called it " pitting " and so far they tell me I have some form of OA, though it " could " be PA..maybe...I have not been on Enbrel because I have been having a number of hand surgeries over the past 10 months, so don't know if that would work or not... THANKS! Liz --------------------------------- Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Liz, You know I am not really for sure what PITTING is. I would say that it would look like little pen hole indentions. That may have a little black or shaded spot in it. I have had horizontal lines, those are the ones that go across isn't it? Well if it is that is the ones that I have had. It is weird the flair that I had in April was when I noticed them. That has been about 4 months ago and the weird thing is they have grown out almost completely!! That is weird isn't it? Yes I do notice scales under the nail somewhat. It is almost like my toe nail has gotton a little thicker or something. I am glad that it is growing out now is only at the tip of my nail now. Nail polish covers it up some if you wear sandles. I also noticed that the toe nail was slightly a different shade than the other toe nails. This only happened on my big toe and on one of my thumbs. I hope that this helped you some. Take care and have a great day Tammy liz constable <doglover14850@...> wrote: Can someone please define " pitting in the nails " for me? I am not sure WHAT this means...Are they LINES or what? I have deep grooves in my nails (most Vertical but one just developed a horizontal one) and I also have what appear to be SCALES under a couple of my nails (thumbs..)... No doctor has called it " pitting " and so far they tell me I have some form of OA, though it " could " be PA..maybe...I have not been on Enbrel because I have been having a number of hand surgeries over the past 10 months, so don't know if that would work or not... THANKS! Liz --------------------------------- Music Unlimited - Access over 1 million songs.Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 It helped alot Mark, thank you!! On 8/2/06, verkhoturye <radiomark@...> wrote: > > Hi Sandy, > > My understanding is that a bone density scan will indicate the > severity of any osteoperosis/osteponia which would represent a loss of > bone mass. The less the mass, the more prone you are to fracturing. > Where I have psoriatic spondylitis, the doctors want to make sure that > if I do have advancing osteoperosis, that they can slow it down or > stop it completely, so I can better avoid getting cracked vertebrae. > > I've read that there is another test which they can do which is a > nuclear test simply called a bone scan. In this test, they can > actually see where PA is concentrating its destructive properties. It > will show up on the imaging as dark black spots which will help you > see where the damage is occuring: > > http://www.webmd.com/hw/health_guide_atoz/hw200283.asp > > I hope this is helpful. > > Regards, > > Mark > > > > > > > > > > > > > > > In a message dated 7/28/2006 4:28:57 P.M. Eastern Standard Time, > > > > radiomark@ writes: > > > > > > > > According to my rheumy, psoriatic spondylitis responds to > > > > Humira better than Enbrel. He contacted my dermatologist and GP and > > > > told me he would take over from here. By the way, another lovely > > > > side effect of spondylitis is osteopenia/osteoporosisside effect > of s > > > > significant bone mass over the past four years. I should have > gone in > > > > each year for the past four years for x-rays and didn't. After > what I > > > > was initially told, I figured that I didn't and wouldn't have future > > > > joint damage....wrong! > > > > > > > > > > > > > > > > Mark, > > > > I also have spondylitis. > > > > I just got the results of a DEXA scan for bone density. The doc > > > said " You > > > > have very dense bones, except for one little spot on your hip. " He > > > called it > > > > osteopenia and is putting me on Fosomax. This won't fix the > > > existing problem > > > > but it will keep it from getting worse. I was showing osteopenia > > > five years > > > > ago and it's gotten a bit worse but not to the point where he wants > > > to call > > > > it osteoporosis. > > > > > > > > I'm currently off all PA meds. Supposedly I'm in remission. It's > > > nice to > > > > know that Humira is better for spondylitis than Enbrel. I'll keep > > > that fact > > > > in mind. > > > > > > > > One more thing I learned when I was with the doc. It is extremely > > > important > > > > that if we are taking MTX that we take our Folic Acid. That's not > > > just > > > > brain fog we're experiencing but brain damage. This is reversible > > > damage that > > > > corrects itself when we stop the MTX and/or start up Folic Acid. He > > > also said > > > > that Folate is better absorbed by our bodies than plain Folic Acid. > > > > > > > > Just thought I'd share. > > > > > > > > Sandy swOhio > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 You can tell you have the disease but nobody else can...that's why they call it an invisible disease. At times, it is invisible. We know it's there...we can fake it when it's not so obvious. Where I work now....they don't know. Oh they know I take shots for arthritis. But I can outwork them now....just like I was 5 yrs ago. But like you said...I know. I'm glad you are doing better now. Keep on believing and never give up. Relish it when you are doing better. I wish you all the best in caring for those 2 girls. I'm a single Mom too of a special needs daughter who is 11 (most of the time...lol...sometimes she is 40...sometimes she is 3) . How old are your girls? How have they handled your difficult times? How have you handled it together? -Betz > > > > I finally got a letter in the mail that my first appt with a > > Rheumatologist is on the 14th of Aug. I was told that when they look > > for PA they look at your finger nails for vertical lines and pitting > > is that correct? (maybe someone else in the group can answer this) I > > have both the lines and pitting and also many of my finger and toe > > nails are detatched from the nailbeds. Anyway I hope your appt goes > well. > > > > > > > > [Editor's Note: One of the classic symptoms of Psoriasis is pitting > of the nails so that is something which steers towards a diagnosis of > PA. HOWEVER, not everyone with psoriasis has pitting of the nails so > in and of itself, it is not conclusive. I was diagnosed with RA for > decades because I had no P and then my nails became pitted and the > rheumy altered the diagnosis. Good luck on YOUR appointment. Please > fill us in afterwards and let us know if you have any questions > leading up to then. Kathy F.] > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 It looks like someone has pushed in your nail in several places on the surface of the nails... Love and Peace Always Shaun and Barb Quote Link to comment Share on other sites More sharing options...
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