Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
I thought I would follow Buddacat and re-introduce myself. I have been following posts since the new site started, but have not been active.
I am 58 and was diagnosed three years ago. I am sero-negative, but was lucky enough to have a very quick diagnosis and treatment. I did the prednisone thing, and then started Methotrexate. I was on that for 1.5 years, added if I remember correctly plaquinil to it, then stopped MTX, (I just could not tolerate it, even the injections) I then was on plaquinil, sulfazalizine and leuflidimide. Just this past Saturday I had my first Humira shot. The doctor said that if the humira seems to help we will take the sulfazalizine away.
I work fulltime, and am married with no children. I volunteer at the elementary school and the nursing home with my standard poodle who is a registered therapy dog. The volunteering really helps me stay out of my head when I get down about the disease. Based on my last scans, I am not where the doctor wants me, thus the addition of the humira. However I have felt better the last year, managed to get through it without any infections or serious flares and even traveled to Mexico and the Maritime Provinces of Canada on a couple of vacations. For those of you just starting on this journey, it is scary, but it does get better and becomes a part of your life (says the lady who cried before her first humira shot on Saturday morning!) but does not encompass it all, at least that is how it has worked for me.
Gentle hugs to you all, Peggy
When I started Humira 6 years ago it took about 3 weeks before I noticed appreciable improvement. I swear by this drug. Really works for me. I do take 7.5 mg MTX concurrently to synergize the Humira.
Am hoping this is your magic charm, Peggy.
For those who don't know me, I've been in and out of DS for 8 1/2 years. I first joined when it appeared that I had pancreatic cancer (didn't), and while I was waiting for a reply to my questions (never came), I found the RA group. I apparently had a short brush with seronegative RA, that followed a similarly short bout of ulcerative colitis. Bother were treated successfully with sulfasalazine, and I was on my way. That was 2000-2001, when I was 53. Four and a half years later, in 2005, when I was 58, I was slammed with a severe onset of the sero-positive RA. There's no doubt in my mind that stress brought on the RA. I startted with MTX, which took a long time to have any effect, and was taking 25mg when I was failed by MTX after 18 months, with Brochiolitis Obliterans with Organizing Pneumonia (BOOP). I was in ICU for a week, in hospital for 2 weeks, treated with steroids, anti-biotics and aggressive pulmonary rehab. Five months later, I was failed by Remicade (drug-induced bone marrow suppression), and since I was also taking Arava for the last 2 months, that drug was considered unfriendly, as well. In April 2008, began Rituxan infusions as a single drug (no DMARDs) therapy, and it's worked wonders for me. I've heard far more negative Rituxan stories than positive, but just before the sitcheroo on DS, there were a couple of others reporting success.
That's my RA story. My family history with RA is extensive, and I hope I haven't passed it along to my kids.
Peggy, that's a funny story about crying before your first humira shot. I grew up overseas at a time when travel to other countries brought great risk of disease, so we had to have countless vaccinations for things like typhoid, thyphus, yellow fever, cholera that nobdy evenhears about any more. My mom got tired of hearing my brother and I cry, so she started bribing us with a quarter per shot if we didn't cry. Also, when I get Rituxan infusions, the nurses are required to pull the curtain around the area where we sit, so other patients won't see us cry when they insert the needle for the IV.
Buddhacat, always glad to see you back, and that Rituxan is still working for you. My hope and prayer is that I will be able to say this about mthx and Orencia in 8 or 9 years.
Funny about the crying. I've never cried for a shot. And no curtains where I did Rituxan and Actemra infusions. I remember once the assistant nurse tried to get the IV in. She made 3 large holes that didn't work, and then she was crying and apologizing to me.. The head nurse did it from then onward. The assistant almost burst into tears every time she saw me. LOL But I am too tough to cry, I guess!
I was on Kineret for 5 years, a daily needle with mthx, a weekly needle. In combo with mthx it was 100%. With Sulfasalazine, it was about 85%. But I was so grateful for those daily painful needles, because the rest of my day was not filled with pain.
I still feel that way. I do Orencia shots by choice, and I admit they can be painful. But a stiff upper lip and no crying here. As for mthx, and those thin diabetic needles, a lot of times I wonder if it has even gone in, but the needle is empty.
I've been back on DS for 2 or 3 years (who knows since they took away the start date) I originally found DS struggling after a reconstructive foot surgery 7 years ago, where the bunion would not heal. I guess when I was feeling better, as Lynn says, I was too busy with life and left. The last two years have seen a succession of med failures, but hopefully I have found another magic bullet combo. If you want to know more about me, just read my posts. I tend to relate my experiences, perhaps too much??