Nine months into Polymyositis....
Ok, so time to get an update in between working on office stuff and getting ready to do some yard work while it's sunny. It's been a month, nearly, since I had an update on this site, and I have been a bit remiss. Still I had some interesting things happen in the last two weeks, so I wanted to journal it so I can look back and remember when this stuff happens.
It is too much to expect that I have been on these heavy duty drugs for 9 months and not see any real side effects; I'm on 150mg a day of Imuran, 25mg a week of MTX, and just down to 10 mg a day, starting today, of Prednisone...so doing the Prednisone taper (was on 80mg a month for 4 months). I went to the ER with terrible upper GI pain 2 weeks ago - the ER doc took an ultra sound and found I had 9, read 'em and weep, 9 gall stones. No inflammation, but that was due to the Prednisone. So he had me see a gastrointestinal surgeon who confirmed gall stone disease. Exacerbated by the Imuran. He is NOT thrilled about doing surgery to take out the gall bladder, due to the amount of immune suppressants I am on, but better that then pancreatitus. After reading up on that disease, I agree. My Rheumy does not agree, thinks I had severe gastrointestinal distress, and had me stop Fosomax, and start injecting MTX. And put me on Nexium each morning. She does NOT want ANY surgery now until I am off all drugs - maybe in 2 years. The surgeon and the Rheumy had a heated discussion, and the negotiated agreement is...when I have another attack, and I will says the surgeon, then I go in for surgery.
I also went recently to an ophthalmologist because I was having trouble seeing out of my left eye. Due to Prednisone, I thought. Indeed. I have a terrible steroid-induced cataract that has formed in the left eye and one starting in my right eye. Might not be able to drive by August, says she. Still, I can't have cataract surgery until I am off Prednisone. Not for another year, I let her know. No good, says she. Can't do cataract surgery until off Prednisone - so I am heading to a cataract surgeon in June to see if that is true. I drive several thousand miles a month for my job, so I do have to see.
Otherwise, I am very good, done with PT for a bit, and now working out with a trainer to get my butt stronger as stairs are still tough. But Saturday I hiked several miles, unloaded a pick-up load of barkdust, mowed and weeded the yard and planted several pots of plants. So almost back to normal energy levels...I'd say 80%.
My blood panels are almost normal...CPK is at 1000 the best it has been in 10 months, AST 80 and ALT 55. So not bad. I have not confessed to taking diuretics in order to get the CPK down the last two blood tests, but I go to the Myositis center at OHSU tomorrow, and I'll confess to the doctor there. I have another blood test tomorrow so we'll get the skinny then. In the meantime, the Rheumy thinks I had a "trigger" event that started all of this, and if we can keep flares at bay for two years, I may be able to be in permanent remission. We shall see.
All in all, life is good, medical bills are a PAIN, and I found out that I owe in taxes for last year - and THAT does not seem possible after paying out all of the medical stuff, but what the heck. Gotta keep Afghanistan's infrastructure from crumbling...
It is too much to expect that I have been on these heavy duty drugs for 9 months and not see any real side effects; I'm on 150mg a day of Imuran, 25mg a week of MTX, and just down to 10 mg a day, starting today, of Prednisone...so doing the Prednisone taper (was on 80mg a month for 4 months). I went to the ER with terrible upper GI pain 2 weeks ago - the ER doc took an ultra sound and found I had 9, read 'em and weep, 9 gall stones. No inflammation, but that was due to the Prednisone. So he had me see a gastrointestinal surgeon who confirmed gall stone disease. Exacerbated by the Imuran. He is NOT thrilled about doing surgery to take out the gall bladder, due to the amount of immune suppressants I am on, but better that then pancreatitus. After reading up on that disease, I agree. My Rheumy does not agree, thinks I had severe gastrointestinal distress, and had me stop Fosomax, and start injecting MTX. And put me on Nexium each morning. She does NOT want ANY surgery now until I am off all drugs - maybe in 2 years. The surgeon and the Rheumy had a heated discussion, and the negotiated agreement is...when I have another attack, and I will says the surgeon, then I go in for surgery.
I also went recently to an ophthalmologist because I was having trouble seeing out of my left eye. Due to Prednisone, I thought. Indeed. I have a terrible steroid-induced cataract that has formed in the left eye and one starting in my right eye. Might not be able to drive by August, says she. Still, I can't have cataract surgery until I am off Prednisone. Not for another year, I let her know. No good, says she. Can't do cataract surgery until off Prednisone - so I am heading to a cataract surgeon in June to see if that is true. I drive several thousand miles a month for my job, so I do have to see.
Otherwise, I am very good, done with PT for a bit, and now working out with a trainer to get my butt stronger as stairs are still tough. But Saturday I hiked several miles, unloaded a pick-up load of barkdust, mowed and weeded the yard and planted several pots of plants. So almost back to normal energy levels...I'd say 80%.
My blood panels are almost normal...CPK is at 1000 the best it has been in 10 months, AST 80 and ALT 55. So not bad. I have not confessed to taking diuretics in order to get the CPK down the last two blood tests, but I go to the Myositis center at OHSU tomorrow, and I'll confess to the doctor there. I have another blood test tomorrow so we'll get the skinny then. In the meantime, the Rheumy thinks I had a "trigger" event that started all of this, and if we can keep flares at bay for two years, I may be able to be in permanent remission. We shall see.
All in all, life is good, medical bills are a PAIN, and I found out that I owe in taxes for last year - and THAT does not seem possible after paying out all of the medical stuff, but what the heck. Gotta keep Afghanistan's infrastructure from crumbling...
Replies
So glad to hear things are going well. sounds to me like a really fast turnaround if you are back to 80 %, that is AMAZING... I am still at maybe 30 % two years later and on Steroid and IVIG... But getting stronger and off most of my oxygen. Just sleeping and exercise and long drives.
Hiking several miles is out of the question for me... But i am doing better at bursts and getting some things done around the house.
My best to you always, Shawna
I am so glad to hear from you and hear your update. I\'m sorry about the side effects from Prednisone. It is so frustrating. I have had several surgeries while on Prednisone and Methotrexate. The problem is slow healing and risk of infection. I always started a big dose of antibiotics before having the surgery and then braced for incredible slow healing....but I always healed and come out on the other side okay. One thing I do differently is conscious sedation (MALT) anesthesia. It is easier on your body. They don\'t have to intubate you. I don\'t know if that is an option for your surgeries but worth checking out if you have to go that route.
Thanks for the update. I\'ve been thinking about you lots and glad to hear you are doing so well.
It does not make sense to me that you can\'t have cataract surgery while on Steroids. Many folks need it and i certainly would find another doc for a second and or third opinion. Your labs will tell if you are too terribly immunocompromised. I have not ever been, so it is not a given...
Again so glad to hear the good physical activity news...
S