It took me 7 years, after a car accident that I could never get over, to get a complete, confirmed diagnosis. My General Practitioner was on the right track, after several blood tests Sjogren's Syndrome finally showed up positive, and opened the door into the autoimmune world.
How long has your journey been?
I have been dealing with this disease for 9 years in total. It took about a year and a half to finally get the diagnosis but like I said, I had to travel from Maine to Mass to Lahey Clinic. The 3 doctors I have there are actually wonderful in particular my neuromuscular dr. I think they ran every autoimmune blood work on me plus I had a muscle bx in Maine which was negative and they repeated at Lahey which came out positive and that is when I finally was diagnosed. I start the prednisone again tomorrow. Joan
I was lucky and had a fantastic dr. It only took a few months.
Hey CAT LADY,
I would suppose by your screen name that you are a feline lover! We don't presently have a pet, other than grand kids, but our neighbors have dozens of outside cats, and they share the water in the bird bath with the birds!
Wow, 9 years is a heck of a long time, lots of money and energy put forth! But worth it when you finally get somewhere!
Is there a med, or a treatment that has helped you, or is it the Pred alone?
Thanks so much for responding, I look forward to getting to know you!
I consider myself pretty lucky too, to have been diagnosed within about 5 months. I hate to see so many people go years without a diagnosis.
LegoGal said:
I was lucky and had a fantastic dr. It only took a few months.
Hi LegoGal,
Good to hear from you! My grandsons are big Lego fans!
You are so very fortunate to have gotten such a fast dx! Good for you! Hang on to that Dr if you can!
I am ever hopeful that you all find 'your Doctor' and get the care that you deserve.
Thanks so much for responding, looking forward to getting to know you!
Wishing you well,
SK
You were fortunate as well, Nichole! Is there a med or treatment of some kind that you feel is helping you?
Hey there!
I was sick and didn't know it for about 5 years before I saw my current dermatologist who took one look at my hands and said, "That looks like Dermatomyositis!" She did a little biopsy of a Gottron's Papule, took some blood work, sent it off to the lab and I had a diagnosis within a matter of days. That was it!
Then came the fun part of blood work, MRI's, muscle biopsy, EMG, etc, etc. That was all over the course of a few months. I think that the hardest part was getting through all of that and then spending the next year trying to get all of my medication figured out and working through my fears as well as trying to gain back my strength - both physically and emotionally. It took a toll on me, especially since in the middle of it all I had my first major flare.
Wouldn't wish any of it on my worst enemy let alone all of the wonderful people that I have met in this group and along the way!
I was lucky - my Internist wouldn't quit until she got the definitive diagnosis. She actually suspected DM the first day I saw her for the muscle weakness and rash. She sent me for many tests including the EMG and then finally the muscle biopsy. Within a few days of the muscle biopsy, the diagnosis was confirmed. I've had great doctors. All toll, it took 6 months. That was in August 2008. I've been off all medications for one year. Very grateful!
Actually there is SK, after about 2 years of high doses of prednisone and yucky methotrexate and immurane (ivig which gave me an awesome case of meningitis) and all the other concoctions we all take the doc tried this infusion called rituxan about 6 months ago, well it takes a few months to work… Well it brought my numbers down and now I’m off prednisone and looking at another dose of rituxan since numbers are rising again…
Long story long! Lol
You were fortunate as well, Nichole! Is there a med or treatment of some kind that you feel is helping you?
Hi Maren,
A Derm diagnosed you, in many cases of autoimmune, seems as though the Derm is the one who finally solved the mystery! Thank God for her!
I'm sure the tests are exhausting, and the biopsies are terrifying, but gotta do them, right? I can imagine how much of an emotional struggle this is for the young. I feel everyone deserves to have a healthy childhood and young life, we expect for things to go wrong when we age. And please don't misunderstand me, I have great compassion for all, and don't feel okay about someone who is not young being ill, especially chronically ill.
Is Rituxan something that is working for you?
Hi Sioux,
Thanks for responding! Oh you seem to have an excellent Rheum! Good to hear! Sounds as though you are in a remission, or is it possible reversing this illness? This gives hope to all, I'm sure! Hope it lasts a lifetime for you!
So happy to hear this,
SK
Hey Nichole,
Oh, I am familiar with Methotrexate! Yes indeed! After a stomach ulcer from the Sulfasalazine, it was on to MX, and I faired no better with it! UM! I know it helps so many people, but I felt no better, worse really!
I know there are infusions for us arthritics too, Remicade is one off the top of my head, but I went from those 2 pills to auto-inject Enbrel weekly to the 'mix it up, build the needle type' of Enbrel biweekly to being taken off and staying off it for about 3 months. If I don't get cancelled again, I see him Monday! I just keep picking up every bug the kids drag in, and have recurring UTIs, bronchitis, thrush... Bronchitis probably Sjogren's Syndrome related (it's much more complicated than dry eyes and dry mouth).
Since I have to look these up, I'll post the link in case there is someone else unfamiliar with these.
http://www.rituxanforra-hcp.com/?cid=raf_PS_MIUARAPS0112&c=MIUARAPS0112&moc=MIUARAPS0112&utm_medium=cpc&utm_source=google&utm_campaign=HCP%20RA%20Branded%20(Jan%2014)&utm_term=rituxan&gclid=CMPmxcfDyr0CFYyhOgodOG4A5Q
I'm really surprised to see a RA med used for this, but it's all autoimmune, right? PsA and RA usually take the same drugs, and more, much more is discussed about RA than PsA. Of course your disease is not even whispered!
http://www.rxlist.com/imuran-drug.htm UM, this is a BIG GUN, Nichole!
I'm so sorry that you have gone through so much, especially while raising a child!
I hope that you will get into a really good place and stay there, my friend!
Thanks SK. When I got the ivig infusions it was at a hospital but the rituxan is at my Rheumy so me and the RA patients sit around like we’re at a bar " what you havin?"…then when I find out their infusions last about 10-30 minutes I tell the nurse “I want what she’s havin’!” Mine last about 5-6 hours, lol!
But hey, it’s great reading time!!
I figured you were familiar with methotrexate too, it’s yucky isn’t it? I think it makes a difference for me but plays heck on my stomach. Injections or pills doesn’t matter. Were you worse because of the side effects or it made your symptoms worse?
Hey Nichole,
Oh, I am familiar with Methotrexate! Yes indeed! After a stomach ulcer from the Sulfasalazine, it was on to MX, and I faired no better with it! UM! I know it helps so many people, but I felt no better, worse really!
I know there are infusions for us arthritics too, Remicade is one off the top of my head, but I went from those 2 pills to auto-inject Enbrel weekly to the 'mix it up, build the needle type' of Enbrel biweekly to being taken off and staying off it for about 3 months. If I don't get cancelled again, I see him Monday! I just keep picking up every bug the kids drag in, and have recurring UTIs, bronchitis, thrush... Bronchitis probably Sjogren's Syndrome related (it's much more complicated than dry eyes and dry mouth).
Since I have to look these up, I'll post the link in case there is someone else unfamiliar with these.
http://www.rituxanforra-hcp.com/?cid=raf_PS_MIUARAPS0112&c=MIUA...(Jan%2014)&utm_term=rituxan&gclid=CMPmxcfDyr0CFYyhOgodOG4A5Q
I'm really surprised to see a RA med used for this, but it's all autoimmune, right? PsA and RA usually take the same drugs, and more, much more is discussed about RA than PsA. Of course your disease is not even whispered!
http://www.rxlist.com/imuran-drug.htm UM, this is a BIG GUN, Nichole!
I'm so sorry that you have gone through so much, especially while raising a child!
I hope that you will get into a really good place and stay there, my friend!
The answer to your question is "YES"!!
Methotrexate and Sulfasalazine are DIRTY words to me! Sorry to the folks that these help, but to me they are bad news!
BTW, I surely see infusions of some kind in my future! UM!
DX was a couple of months. Feeling good again after 4 yrs. did preds finally got off 2 months ago,methatrextrate ,cellcept, lots of creams. I’ve tried IVIG and now on Acthar gel injections twice a week… The Acthar gel is working on the fatigue and muscle soreness, not so great on the skin flaring ( so far). I can actually grocery shop and not be hanging on the cart (for dear life) by the time I am done. I had forgotten what it felt Iike to feel good. Feeling fatigued for so long it was just normal to me. Thank goodness my Dr. understood and wouldn’t settle for me saying I felt OK!!!
This is good news, human7777!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697107/
How wonderful for you that it is making such a difference in your life. I was floored by the cost, but glad you could acquire it!
I just cannot tolerate prednisone, the first problem is the severe indigestion, makes me feel like my hiatal hernia is strangling me, and no antacid will touch it, then go into the no sleep possible until days after the last pill is taken, then it's full monster mode! So, it's just OUT!
This Actar sounds like it's doing the trick! I wish you continued success! Thanks so much for responding, looking forward to getting to know you!
NORD (National Orgination for Rare Diseases ) is helping me until my insurance kicks in. I have been turned down twice by the inxurance so not sure what is going to happen if I do. I could never afford this drug on my own.
SK said:
This is good news, human7777!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2697107/
How wonderful for you that it is making such a difference in your life. I was floored by the cost, but glad you could acquire it!
I just cannot tolerate prednisone, the first problem is the severe indigestion, makes me feel like my hiatal hernia is strangling me, and no antacid will touch it, then go into the no sleep possible until days after the last pill is taken, then it's full monster mode! So, it's just OUT!
This Actar sounds like it's doing the trick! I wish you continued success! Thanks so much for responding, looking forward to getting to know you!
My doctor takes "Ok" and "The same" as "Oh I'm feeling great." Glad you have a good one! I think my biggest issue even on my best days is the fatigue. We've never tried the Acthar gel. Maybe I'll suggest that.
I hear that Planquil (spelling?) is a good one for the skin, although I've never had it, the prednisone cleared most of mine up.
human7777 said:
DX was a couple of months. Feeling good again after 4 yrs. did preds finally got off 2 months ago,methatrextrate ,cellcept, lots of creams. I've tried IVIG and now on Acthar gel injections twice a week.. The Acthar gel is working on the fatigue and muscle soreness, not so great on the skin flaring ( so far). I can actually grocery shop and not be hanging on the cart (for dear life) by the time I am done. I had forgotten what it felt Iike to feel good. Feeling fatigued for so long it was just normal to me. Thank goodness my Dr. understood and wouldn't settle for me saying I felt OK!!!!
Hi 7777,
I had no idea that NORD would help with meds. This is good to know, I'm very glad they stepped in for you and I sincerely hope that they continue to if insurance does not! I just don't know who the manufactures thinks can shoulder this kind of cost!