I on the other hand was just starting to feel some positive effects from the MTX when a nasty kidney infection put me in the hospital for three days. Now I am off it as we try to heal the kidneys. I hurt like the dickens and everything is a chore - even breathing.....but I am hopeful it will help when I can start it again, which is probably in 3 weeks to a month.
I hope you can get back on track soon! So sorry about the kidney infection!
Just Me said:
Good news for you Rosen!
I on the other hand was just starting to feel some positive effects from the MTX when a nasty kidney infection put me in the hospital for three days. Now I am off it as we try to heal the kidneys. I hurt like the dickens and everything is a chore - even breathing.....but I am hopeful it will help when I can start it again, which is probably in 3 weeks to a month.
My rheumatologist tried unsuccessfully to persuade me into starting Humira about 2 years ago. I didn't know it at the time, but I was in the gap. I fell deeper into the gap when I suddenly went from getting by to not even being able to walk. Everything was being done for me by my daughters. My PCP made me go to my rheumatologist the day I drug myself in to visit them. I was shaking all over, not knowing why. I wasn't cold. My primary care Dr. said that I was shaking because my body couldn't process the amount of pain I was in. My rheumatologist told me that I was being put on Humira, he wasn't asking anymore. That was the best decision I had ever had made for me. I even have a job working at a State Park now. I absolutely love it! That is my success story. :)
Also here is a shirt that I've been thinking about getting from Ranger Up.
Great success story! I like your positive attitude!
Just Me said:
Okay, I am new on here. Newly diagnosed (but I have dealt with PsA issues for years and just didn't know what is all meant). Doesn't that sound familiar? For so long I was in the dark and just thought I was always having "issues". I am learning a lot right now and I think of that as a success.
I am in "the Gap" as many of you have called it. We are trying meloxicam. It hasn't helped yet, but just knowing that my doctor is working on finding what will work for me and that many of you have tried different meds lets me not feel alone in this. That lifts my spirits and I think that is a success.
Finding this site....really big success!
My husband, though he is concerned for me, is happy we now know what we are dealing with. His attitude is giving me more optimism and I think that is a success.
Every day I wake up with different pains (knees, elbow, hands, swollen fingers, neck, hips) but when I take a hot shower and get moving I feel a little better. If I sit too long I hurt more, so I force myself to move and usually I find I can accomplish things. Sometime the things are small like gathering the trash, or going through the junk mail but also sometimes they are big. I also find that by staying busy, I realize I have had a few moments in the day that I could actually say I forgot about it. That is a HUGE success.
I own a business and after my diagnosis, I was told to limit my stress...I laughed, seriously, a good laugh. Easy to say - hard to do. But - it forced me to think of my priorities. So, I put some time on my calendar to take a hiatus for a few months to relax and travel. Stop and smell the roses so to say...but I am going to Hawaii to smell the plumeria. Warm breezes, salt water to float in, and naps. When I get back I will only take clients when it fits my schedule. This will limit stress. Another success.
There is a big stress in my life but I love it. I am also a theatrical director for a community theater. It is demanding but it brings great joy. I will do this as long as I can. The planning I can do at home which helps. The on-site rehearsals are exhausting but the adrenaline push during them helps me get past the pain. During this current production I had to sit more and bring on someone else who could choreograph the big numbers. But I am growing a team committed to the vision so that it continues when I can't do it anymore. Right now I am directing "Fiddler on the Roof" and the song "L'chaim, To Life" has great meaning. Life...grasp it while you can. Keeping my optimism while this disease is progressing is the biggest success yet.
Thanks for listening and sharing....if you are in the Seattle area and want to come to the show, I will be happy to give you the info.
The Power of Positive thinking is a motto that anyone with an autoimmune disease has to embrace. I was diagnosed with severe nail psoriasis at the age of 2 and my hands were in the Journal of Pediatric Medicine due to the severity. The PSA diagnosis came at the age of 13. Diagnosed with Fibromyalgia in my twenties. PSA is hereditary in my family as we have found out by working our way back from my diagnosis. I am now 48 and do not define my life by PSA.
When biologics came into the picture, it has changed the lives of many of us with autoimmune disease. I was on Gold initially and DMARD therapy with plaquenil, and NSAIDS, Then came the metho, and prednisone, but too many side effects from those so I started Enbrel about 10 years ago. Biologics have their own problems, mainly the immunosuppressive properties that made working as a nurse taking acre of sick patients a challenge. I had to redefine my career and now work in an office as a clinical nurse manager supervising 20+ nurses in a growing home health company.
Things have not all been rosy: weight gain from prednisone, lost hair from metho, unable to ever take NSAIDS again due to the damage in stomach and esophagus from taking them for 30+ years. Shingles x4 on my face from immunosuppression from biologic therapy.
BUT, I am active as I can be and live each day to its fullest. I have had to make adjustments in my work schedule as I cannot handle working 5 days in a row so I work 4 10 hour shifts. I am not saying that I am better than anyone else but I have had to learn effective coping strategies from an early age. I had a mother who did not effectively cope with illness and I saw how consuming illnesses were in her life and I did not want to take that same path. I constantly am learning and evolving but I do consider myself a success story. I have 2 grown children and a husband who is very supportive which helps a lot. I also have an employer who has been willing to work with me throughout my career of 16 years with them.
I have been on my soap box long enough now but I hope I can give HOPE to others who are newly diagnosed or frustrated where they are at with there PSA. Also, I have one of the best Rheumy's around which is essential to have a Dr who truly listens and cares.
Wow, Buffy, your story is amazing! So sad you had the terrible nail psoriasis as a toddler. How tragic–your parents must have worried a lot!
You had to learn coping skills at a very young age. No doubt your fingers were painful–mine were always achy and uncomfortable once I had fingernail involvement.
Do you still take Enbrel? I just like to know if there’s a good chance it will continue to work for me for a lot of years.
Thanks for sharing your success story!
Buffy said:
The Power of Positive thinking is a motto that anyone with an autoimmune disease has to embrace. I was diagnosed with severe nail psoriasis at the age of 2 and my hands were in the Journal of Pediatric Medicine due to the severity. The PSA diagnosis came at the age of 13. Diagnosed with Fibromyalgia in my twenties. PSA is hereditary in my family as we have found out by working our way back from my diagnosis. I am now 48 and do not define my life by PSA.
When biologics came into the picture, it has changed the lives of many of us with autoimmune disease. I was on Gold initially and DMARD therapy with plaquenil, and NSAIDS, Then came the metho, and prednisone, but too many side effects from those so I started Enbrel about 10 years ago. Biologics have their own problems, mainly the immunosuppressive properties that made working as a nurse taking acre of sick patients a challenge. I had to redefine my career and now work in an office as a clinical nurse manager supervising 20+ nurses in a growing home health company.
Things have not all been rosy: weight gain from prednisone, lost hair from metho, unable to ever take NSAIDS again due to the damage in stomach and esophagus from taking them for 30+ years. Shingles x4 on my face from immunosuppression from biologic therapy.
BUT, I am active as I can be and live each day to its fullest. I have had to make adjustments in my work schedule as I cannot handle working 5 days in a row so I work 4 10 hour shifts. I am not saying that I am better than anyone else but I have had to learn effective coping strategies from an early age. I had a mother who did not effectively cope with illness and I saw how consuming illnesses were in her life and I did not want to take that same path. I constantly am learning and evolving but I do consider myself a success story. I have 2 grown children and a husband who is very supportive which helps a lot. I also have an employer who has been willing to work with me throughout my career of 16 years with them.
I have been on my soap box long enough now but I hope I can give HOPE to others who are newly diagnosed or frustrated where they are at with there PSA. Also, I have one of the best Rheumy’s around which is essential to have a Dr who truly listens and cares.
YEs Grandma J I do still take Enbrel along with Plaquenil. I only have a small patch of psoriasis in scalp and Enbrel keeping inflammation under control. I do get the "itis's" like bursitis and tendonitis but that can be handled. Almost 10 years and counting on Enbrel so I hope you have the same response to it I did.
Grandma J said:
Wow, Buffy, your story is amazing! So sad you had the terrible nail psoriasis as a toddler. How tragic--your parents must have worried a lot! You had to learn coping skills at a very young age. No doubt your fingers were painful--mine were always achy and uncomfortable once I had fingernail involvement. Do you still take Enbrel? I just like to know if there's a good chance it will continue to work for me for a lot of years. Thanks for sharing your success story!
Buffy said:
The Power of Positive thinking is a motto that anyone with an autoimmune disease has to embrace. I was diagnosed with severe nail psoriasis at the age of 2 and my hands were in the Journal of Pediatric Medicine due to the severity. The PSA diagnosis came at the age of 13. Diagnosed with Fibromyalgia in my twenties. PSA is hereditary in my family as we have found out by working our way back from my diagnosis. I am now 48 and do not define my life by PSA.
When biologics came into the picture, it has changed the lives of many of us with autoimmune disease. I was on Gold initially and DMARD therapy with plaquenil, and NSAIDS, Then came the metho, and prednisone, but too many side effects from those so I started Enbrel about 10 years ago. Biologics have their own problems, mainly the immunosuppressive properties that made working as a nurse taking acre of sick patients a challenge. I had to redefine my career and now work in an office as a clinical nurse manager supervising 20+ nurses in a growing home health company.
Things have not all been rosy: weight gain from prednisone, lost hair from metho, unable to ever take NSAIDS again due to the damage in stomach and esophagus from taking them for 30+ years. Shingles x4 on my face from immunosuppression from biologic therapy.
BUT, I am active as I can be and live each day to its fullest. I have had to make adjustments in my work schedule as I cannot handle working 5 days in a row so I work 4 10 hour shifts. I am not saying that I am better than anyone else but I have had to learn effective coping strategies from an early age. I had a mother who did not effectively cope with illness and I saw how consuming illnesses were in her life and I did not want to take that same path. I constantly am learning and evolving but I do consider myself a success story. I have 2 grown children and a husband who is very supportive which helps a lot. I also have an employer who has been willing to work with me throughout my career of 16 years with them.
I have been on my soap box long enough now but I hope I can give HOPE to others who are newly diagnosed or frustrated where they are at with there PSA. Also, I have one of the best Rheumy's around which is essential to have a Dr who truly listens and cares.
YEs Grandma J I do still take Enbrel along with Plaquenil. I only have a small patch of psoriasis in scalp and Enbrel keeping inflammation under control. I do get the "itis's" like bursitis and tendonitis but that can be handled. Almost 10 years and counting on Enbrel so I hope you have the same response to it I did.
Grandma J said:
Wow, Buffy, your story is amazing! So sad you had the terrible nail psoriasis as a toddler. How tragic--your parents must have worried a lot! You had to learn coping skills at a very young age. No doubt your fingers were painful--mine were always achy and uncomfortable once I had fingernail involvement. Do you still take Enbrel? I just like to know if there's a good chance it will continue to work for me for a lot of years. Thanks for sharing your success story!
Buffy said:
The Power of Positive thinking is a motto that anyone with an autoimmune disease has to embrace. I was diagnosed with severe nail psoriasis at the age of 2 and my hands were in the Journal of Pediatric Medicine due to the severity. The PSA diagnosis came at the age of 13. Diagnosed with Fibromyalgia in my twenties. PSA is hereditary in my family as we have found out by working our way back from my diagnosis. I am now 48 and do not define my life by PSA.
When biologics came into the picture, it has changed the lives of many of us with autoimmune disease. I was on Gold initially and DMARD therapy with plaquenil, and NSAIDS, Then came the metho, and prednisone, but too many side effects from those so I started Enbrel about 10 years ago. Biologics have their own problems, mainly the immunosuppressive properties that made working as a nurse taking acre of sick patients a challenge. I had to redefine my career and now work in an office as a clinical nurse manager supervising 20+ nurses in a growing home health company.
Things have not all been rosy: weight gain from prednisone, lost hair from metho, unable to ever take NSAIDS again due to the damage in stomach and esophagus from taking them for 30+ years. Shingles x4 on my face from immunosuppression from biologic therapy.
BUT, I am active as I can be and live each day to its fullest. I have had to make adjustments in my work schedule as I cannot handle working 5 days in a row so I work 4 10 hour shifts. I am not saying that I am better than anyone else but I have had to learn effective coping strategies from an early age. I had a mother who did not effectively cope with illness and I saw how consuming illnesses were in her life and I did not want to take that same path. I constantly am learning and evolving but I do consider myself a success story. I have 2 grown children and a husband who is very supportive which helps a lot. I also have an employer who has been willing to work with me throughout my career of 16 years with them.
I have been on my soap box long enough now but I hope I can give HOPE to others who are newly diagnosed or frustrated where they are at with there PSA. Also, I have one of the best Rheumy's around which is essential to have a Dr who truly listens and cares.