First of all, I had to learn to use Google Calendar to keep my meds on track and on time. You can't imagine the mess when everything synched the first time and I suddenly had THOUSANDS of new contacts........ Then there was the time they had to use a crane to get me out of the warm water therapy pool, I had gained so much mobility I WAAAAAY overdid it. I had to get a new hobby. I used to be a mega homebrewer (Wine and Beer) Now you gotta understand the 200 gallons a year legally allowed was not near enough.now you are on some meds that that you are not even ALLOWED to smell it let alone drink it..... (fortunatley I got past THOSE kind of drugs) The next thing you learn is that its all most impossible to keep your blood levels of meds constant. There are up and downs and as you learn them knowingly or unkowingly you plan your life around them (I shoot my Enbrel on days of the month that end with 0 or 5 so the day before, after or of I minimize my schedule.) I spend less time with my grandkids on my lap (I have 14) one or the other always has a cold or something and I can't take too many chance at unnecessary exposure - I don't live in a bubble but.......My Travel changes too (for me) My nephew is a very senior executive for a group of major cruise lines. I can live on a cruise ship cheaper than I can live at home. except the injectable drugs are awfully hard to come by at sea......and even harder to carry a month or more of supply through customs Nand sweat a delay and having you icepacks melt and ruin thousands of dollars worth of Enbrel (I pay for my own) I also use a fair amount of inject-able steroids, as this disease attacks certain organs as well and i have never been confused as a body builder....) My work has had me travel the world, my passions still do....
Don't misunderstand I would NEVER go back to the Non bio days or MTX days BUT if I could go back to the early days of NSAIDS and getting shot up from time to time... I would. There are changes in life at every stage of this disease. But hell there are with every stage of life WITHOUT this disease.
I don't mean changes necessarily as a negative....... It can be a positive.
As far as meds go, I have more questions. Today I went to the rheumy for my test results. I saw the nurse practitioner, she examined me and agrees with my podiatrist that I have psoriasis. She said that psoriatic arthritis is a very difficult diagnosis to make. She believes some of my pain is coming from the osteo arth but agrees that the intensity of pain and my history points to psoriatic arth. Although she does not want to "label " me at this time. The doc had wanted to start me on plaquenil which the nurse pract said is contraindicated since I have psoriasis(duh?) Plaquenil will worsen psoriasis and I assume the arthritis if you have it. She was more on the ball than the doc. She is recommending Sulfasalazine which is a 70 year old anti inflammatory drug used to treat RA, psoriatic arthritis and some inflammatory digestive issues. It seems like a gentle start in terms of medication choice, which works for me since I am such a baby about medication. I am wondering what results and side effects you all have had with this drug.
tntlamb said:
First of all, I had to learn to use Google Calendar to keep my meds on track and on time. You can't imagine the mess when everything synched the first time and I suddenly had THOUSANDS of new contacts........ Then there was the time they had to use a crane to get me out of the warm water therapy pool, I had gained so much mobility I WAAAAAY overdid it. I had to get a new hobby. I used to be a mega homebrewer (Wine and Beer) Now you gotta understand the 200 gallons a year legally allowed was not near enough.now you are on some meds that that you are not even ALLOWED to smell it let alone drink it..... (fortunatley I got past THOSE kind of drugs) The next thing you learn is that its all most impossible to keep your blood levels of meds constant. There are up and downs and as you learn them knowingly or unkowingly you plan your life around them (I shoot my Enbrel on days of the month that end with 0 or 5 so the day before, after or of I minimize my schedule.) I spend less time with my grandkids on my lap (I have 14) one or the other always has a cold or something and I can't take too many chance at unnecessary exposure - I don't live in a bubble but.......My Travel changes too (for me) My nephew is a very senior executive for a group of major cruise lines. I can live on a cruise ship cheaper than I can live at home. except the injectable drugs are awfully hard to come by at sea......and even harder to carry a month or more of supply through customs Nand sweat a delay and having you icepacks melt and ruin thousands of dollars worth of Enbrel (I pay for my own) I also use a fair amount of inject-able steroids, as this disease attacks certain organs as well and i have never been confused as a body builder....) My work has had me travel the world, my passions still do....
Don't misunderstand I would NEVER go back to the Non bio days or MTX days BUT if I could go back to the early days of NSAIDS and getting shot up from time to time... I would. There are changes in life at every stage of this disease. But hell there are with every stage of life WITHOUT this disease.
I don't mean changes necessarily as a negative....... It can be a positive.
kmn, I had no side effects from sulfasalazine (and I have a sensitive stomach). I was on it for a long time and it worked well before my condition worsened. Hoping you find some relief with it!
Plaquenil may worsen P in a small number of cases, you can google it to find out the percentage. I don’t think there is any significant record of it worsening PsA. It is prescribed for PsA, though I’ve never heard much about success nor side effects. Certainly did zip for me, but you never know which key will open the lock…
kmn, I had no side effects from sulfasalazine (and I have a sensitive stomach). I was on it for a long time and it worked well before my condition worsened. Hoping you find some relief with it!
Its a very expensive Gene test that has proven to be pretty much worthless in the instance of PsA. Only slightly above half who have PsA are HLA B27 positive. There are higher incidences of it with Ankylosing Spondylitis. BUT nearly 70% who are HLA B27 positive have no disease at all. It can be somewhat helpful in confirming a diagnoses based on other criteria. However it is estimated that at least 30% (pretty consistent with most gene testing) are inaccurate.
kmn said:
What does the HLA-B27 measure?
remicadebeliever said:
Did they not do blood work to test you for HLA-B27?
Its a very expensive Gene test that has proven to be pretty much worthless in the instance of PsA. Only slightly above half who have PsA are HLA B27 positive. There are higher incidences of it with Ankylosing Spondylitis. BUT nearly 70% who are HLA B27 positive have no disease at all. It can be somewhat helpful in confirming a diagnoses based on other criteria. However it is estimated that at least 30% (pretty consistent with most gene testing) are inaccurate.
kmn said:
What does the HLA-B27 measure?
remicadebeliever said:
Did they not do blood work to test you for HLA-B27?
For me, I was tested for EVERYTHING... Rheumatoid, Celiac Disease and everything always came back normal.. They finally tested me for the HLA-B27 gene.. That was the ONLY proof they had that something was wrong.
Which I had also already had the anterior uveitis as well.
The research I've done is contrary to Lamb's.. no offense!
HLA-B27 is a blood test to look for a protein that is found on the surface of white blood cells. The protein is called human leukocyte antigen B27 (HLA-B27).
A positive test means HLA-B27 is present. It suggests a greater-than-average risk for developing or having certain autoimmune disorders.
One of the sites I saw said, "90 percent of people with ankylosing spondylitis have the HLA-B27 gene".
It helped confirm my diagnosis! Without it, I would not have been able to be approved for Biologics..
It was also not that expensive.. Everyone says it is, even my doctor.. With my insurance it was about $100.. You can always ask before having it.
Do your own research and ask your doctor..
kmn said:
No, they did not check HLA B27
tntlamb said:
Its a very expensive Gene test that has proven to be pretty much worthless in the instance of PsA. Only slightly above half who have PsA are HLA B27 positive. There are higher incidences of it with Ankylosing Spondylitis. BUT nearly 70% who are HLA B27 positive have no disease at all. It can be somewhat helpful in confirming a diagnoses based on other criteria. However it is estimated that at least 30% (pretty consistent with most gene testing) are inaccurate.
kmn said:
What does the HLA-B27 measure?
remicadebeliever said:
Did they not do blood work to test you for HLA-B27?
Thanks, I will check it out at my follow up visit. The blood work they have done does show that an auto immune disease is most likely present. Narrowing it down is the tricky part. I am not ready to jump into biologics quite yet but I do want a firm diagnosis (ha Ha) good luck, right! Any way I feel like I am moving in the right direction, I have moved out of my depression about all of this and have started fighting again to figure out what is wrong. BTW do you have psoriasis? My psoriasis is limited but worsening as my pain increases, I wonder if that is normal for PsA. It would make sense. Thanks for the info!
remicadebeliever said:
For me, I was tested for EVERYTHING... Rheumatoid, Celiac Disease and everything always came back normal.. They finally tested me for the HLA-B27 gene.. That was the ONLY proof they had that something was wrong.
Which I had also already had the anterior uveitis as well.
The research I've done is contrary to Lamb's.. no offense!
HLA-B27 is a blood test to look for a protein that is found on the surface of white blood cells. The protein is called human leukocyte antigen B27 (HLA-B27).
A positive test means HLA-B27 is present. It suggests a greater-than-average risk for developing or having certain autoimmune disorders.
One of the sites I saw said, "90 percent of people with ankylosing spondylitis have the HLA-B27 gene".
It helped confirm my diagnosis! Without it, I would not have been able to be approved for Biologics..
It was also not that expensive.. Everyone says it is, even my doctor.. With my insurance it was about $100.. You can always ask before having it.
Do your own research and ask your doctor..
kmn said:
No, they did not check HLA B27
tntlamb said:
Its a very expensive Gene test that has proven to be pretty much worthless in the instance of PsA. Only slightly above half who have PsA are HLA B27 positive. There are higher incidences of it with Ankylosing Spondylitis. BUT nearly 70% who are HLA B27 positive have no disease at all. It can be somewhat helpful in confirming a diagnoses based on other criteria. However it is estimated that at least 30% (pretty consistent with most gene testing) are inaccurate.
kmn said:
What does the HLA-B27 measure?
remicadebeliever said:
Did they not do blood work to test you for HLA-B27?
There are large numbers of "auto Immune" diseases including seronegative spondyloarothopies. Yes HLA B-27 is present in some of them but this is a PsA board, and one would assume the matter at hand is PsA.
PsA is pretty unique intaht more commonly than not NEGATIVE blood work is used as a criteria. With the above criteria positive B-27 does not score in any of them. (in one of them the Fournier (not used in this country) either a positive B 16,38, 39, or 17 scores.
Actually I do not have any psoriasis. I had small amounts (2 localized spots) as a child until I turned 13.. and I haven't had any since. I sure hope you find the answers you are looking for. and the help you need to feel better!!!
kmn said:
Thanks, I will check it out at my follow up visit. The blood work they have done does show that an auto immune disease is most likely present. Narrowing it down is the tricky part. I am not ready to jump into biologics quite yet but I do want a firm diagnosis (ha Ha) good luck, right! Any way I feel like I am moving in the right direction, I have moved out of my depression about all of this and have started fighting again to figure out what is wrong. BTW do you have psoriasis? My psoriasis is limited but worsening as my pain increases, I wonder if that is normal for PsA. It would make sense. Thanks for the info!
remicadebeliever said:
For me, I was tested for EVERYTHING... Rheumatoid, Celiac Disease and everything always came back normal.. They finally tested me for the HLA-B27 gene.. That was the ONLY proof they had that something was wrong.
Which I had also already had the anterior uveitis as well.
The research I've done is contrary to Lamb's.. no offense!
HLA-B27 is a blood test to look for a protein that is found on the surface of white blood cells. The protein is called human leukocyte antigen B27 (HLA-B27).
A positive test means HLA-B27 is present. It suggests a greater-than-average risk for developing or having certain autoimmune disorders.
One of the sites I saw said, "90 percent of people with ankylosing spondylitis have the HLA-B27 gene".
It helped confirm my diagnosis! Without it, I would not have been able to be approved for Biologics..
It was also not that expensive.. Everyone says it is, even my doctor.. With my insurance it was about $100.. You can always ask before having it.
Do your own research and ask your doctor..
kmn said:
No, they did not check HLA B27
tntlamb said:
Its a very expensive Gene test that has proven to be pretty much worthless in the instance of PsA. Only slightly above half who have PsA are HLA B27 positive. There are higher incidences of it with Ankylosing Spondylitis. BUT nearly 70% who are HLA B27 positive have no disease at all. It can be somewhat helpful in confirming a diagnoses based on other criteria. However it is estimated that at least 30% (pretty consistent with most gene testing) are inaccurate.
kmn said:
What does the HLA-B27 measure?
remicadebeliever said:
Did they not do blood work to test you for HLA-B27?
I would get another Dr u should not have to wait till there is joint damage to do something about it. Pulse to say things like I have seen worse is unprofessional.
A second opinion is never a bad idea! I had a back doctor who wanted to do major fusion surgery on my back, without any guarantee that my back would ever fuse back together. He swore I needed it. Doctors 2-7 were appalled by his conclusion and clearly stated that fusion would do NOTHING for my back pain. Guess they were right as the pain turned out to be completely unrelated to the very mildly herniated disc I have.
Moral of this story: feel free to get a second, third and fourth opinion. It's YOUR body, not the doctor's, and at the end of the day YOU must live in it. (PS: I only went for a 2nd and 3rd opinion, the other docs told me their opinions without my seeking them out.)
A second opinion is never a bad idea! I had a back doctor who wanted to do major fusion surgery on my back, without any guarantee that my back would ever fuse back together. He swore I needed it. Doctors 2-7 were appalled by his conclusion and clearly stated that fusion would do NOTHING for my back pain. Guess they were right as the pain turned out to be completely unrelated to the very mildly herniated disc I have.
Moral of this story: feel free to get a second, third and fourth opinion. It's YOUR body, not the doctor's, and at the end of the day YOU must live in it. (PS: I only went for a 2nd and 3rd opinion, the other docs told me their opinions without my seeking them out.)
When I first saw a rheumatologist (20 odd years ago) it was at a world wide know hospital, I was being seen for my wrist as I had pain and swelling and was told it was tenosynovitis…the rest of the consultation was about my husband (who was not even there and was being seen by another hospital) who has ankylosing spondylitis. I was too young and naive to stand up for myself then but certainly wouldn’t put up with it now, but it made me feel like I wasn’t important and my condition wasn’t worth notice. We need to have our doctor focused on us and how we are affected.