The human body is complicated...I guess before Prednisone (developed in 1956) people who had Polymyalgia Rheumatica just endured the agony, and those with Giant Cell Arteritis had strokes and died. We have come a long way, but have further to go. By the way, short layered hairstyles make hair look thicker.
@tsc and @hmccarth5. Yes, the evil Prednisone! I have had Giant Cell Arteritis since 2019 and lost most of the vision in my right eye before being hospitalized and given 1000 units of Prednisone by I.V. over a three day period. Had a stroke on the 2nd day (July) and another stroke in September, but Prednisone saved the eyesight in my left eye. Both strokes were classed as small, so did some,but minimal, damage. I was on Prednisone for a year before my new rheumatologist put me on weekly injections of Actemra, a medication specifically designed for GCA. Much easier on the system! I was on both Prednisone and Actemra for several months when my weekly lab results showed that my WBC and neutrophils had bottomed out, and I was immediately taken off both until my lab work crept back to normal. I resumed weekly Actemra injections (no more Prednisone) and over time, all the nasty results of Prednisone disappeared, including the awful weight gain, hair loss, itching, moon face, etc. So happy to be back to my old self! I'm now only on Actemra injections every two weeks and my rheumatologist is VERY pleased with my progress. She didn't even recognize me because she met me at the height of my Prednisone period. So have hope, folks, all those nasty changes in your body will disappear once you're no longer a victim of that lifesaving, eyesight saving Prednisone. It's such a wonderful medication when we are in dire need of it, and we have to be thankful we have it for those critical times in our lives. Laurie ❤
@tsc and @hmccarth5. Yes, the evil Prednisone! I have had Giant Cell Arteritis since 2019 and lost most of the vision in my right eye before being hospitalized and given 1000 units of Prednisone by I.V. over a three day period. Had a stroke on the 2nd day (July) and another stroke in September, but Prednisone saved the eyesight in my left eye. Both strokes were classed as small, so did some,but minimal, damage. I was on Prednisone for a year before my new rheumatologist put me on weekly injections of Actemra, a medication specifically designed for GCA. Much easier on the system! I was on both Prednisone and Actemra for several months when my weekly lab results showed that my WBC and neutrophils had bottomed out, and I was immediately taken off both until my lab work crept back to normal. I resumed weekly Actemra injections (no more Prednisone) and over time, all the nasty results of Prednisone disappeared, including the awful weight gain, hair loss, itching, moon face, etc. So happy to be back to my old self! I'm now only on Actemra injections every two weeks and my rheumatologist is VERY pleased with my progress. She didn't even recognize me because she met me at the height of my Prednisone period. So have hope, folks, all those nasty changes in your body will disappear once you're no longer a victim of that lifesaving, eyesight saving Prednisone. It's such a wonderful medication when we are in dire need of it, and we have to be thankful we have it for those critical times in our lives. Laurie ❤
Hi @artist01, I am so sorry about your eyesight and your strokes. Were you suffering a long time before being hospitalized and diagnosed? Did you get a biopsy of your temporal artery to confirm the diagnosis? I had a couple of incidents where I couldn't see out of my right eye, but they were short - lived and went away. Although my mother-in-law had GCA, and I was familiar with her symptoms, mine were different, and I never thought I had it. Have you noticed that more people post about PMR than GCA? I had PMR first and the pain is something I will never forget. I was wondering when PMR and GCA were discovered and if there was any treatment before prednisone. Good to hear that Actemra is working for you . All the best, tsc
Hi @artist01, I am so sorry about your eyesight and your strokes. Were you suffering a long time before being hospitalized and diagnosed? Did you get a biopsy of your temporal artery to confirm the diagnosis? I had a couple of incidents where I couldn't see out of my right eye, but they were short - lived and went away. Although my mother-in-law had GCA, and I was familiar with her symptoms, mine were different, and I never thought I had it. Have you noticed that more people post about PMR than GCA? I had PMR first and the pain is something I will never forget. I was wondering when PMR and GCA were discovered and if there was any treatment before prednisone. Good to hear that Actemra is working for you . All the best, tsc
@tsc. Thankyou for your post. In answer to your questions, yes, I had symptoms of extreme fatigue and achey muscles for several months before the GCA diagnosis. I was in my kitchen at home when I suddenly lost most of the vision in my right eye. A right temporal artery biopsy was done shortly thereafter, confirming GCA, followed by an appointment with my Enterologist, who sent me directly to the hospital from his office. I was hospitalized for three days of 1000 units of Prednisone by I.V. daily over the three day period. As I posted in a prior message, I had a stroke on the second day (July) and a second stroke in September. The strokes were likely the result of the GCA vasculitis, known for causing strokes and heart attacks.
I had a heart attack in July of this year and was hospitalized for three weeks.
My rheumatologist has cut my Actemra injections back from weekly to every two weeks, but my weekly lab work has shown a drop in WBC, Neutrophils and Haemoglobin so I'm waiting to hear whether that's the result of the Actemra cutback. Always something!!
And yes, there sure isn't much posting about GCA, but quite a lot about PMR. I wish there were more Connect members to discuss GCA, a rare and serious disease.
Keep well, tsc. Warm regards, Laurie
@tsc. Thankyou for your post. In answer to your questions, yes, I had symptoms of extreme fatigue and achey muscles for several months before the GCA diagnosis. I was in my kitchen at home when I suddenly lost most of the vision in my right eye. A right temporal artery biopsy was done shortly thereafter, confirming GCA, followed by an appointment with my Enterologist, who sent me directly to the hospital from his office. I was hospitalized for three days of 1000 units of Prednisone by I.V. daily over the three day period. As I posted in a prior message, I had a stroke on the second day (July) and a second stroke in September. The strokes were likely the result of the GCA vasculitis, known for causing strokes and heart attacks.
I had a heart attack in July of this year and was hospitalized for three weeks.
My rheumatologist has cut my Actemra injections back from weekly to every two weeks, but my weekly lab work has shown a drop in WBC, Neutrophils and Haemoglobin so I'm waiting to hear whether that's the result of the Actemra cutback. Always something!!
And yes, there sure isn't much posting about GCA, but quite a lot about PMR. I wish there were more Connect members to discuss GCA, a rare and serious disease.
Keep well, tsc. Warm regards, Laurie
@artist01 Laurie, I think we should probably be having this conversation in the PMR group. You have certainly been through the wringer with this terrible disease. How are you feeling now? How are you managing everyday activities? How are your bones? My doctor has me taking a low dose of aspirin daily due to the risk of developing an aortic aneurysm down the road with GCA. 30% of those with PMR develop GCA - so I guess there are fewer of us to post. A doctor from the Mayo Clinic, Bayard Horton did some groundbreaking work on temporal arteritis in the 1930s. Years later, in the 50s, steroids were found to offer relief. I read that Dr. Horton's wife developed temporal arteritis. I guess before that, people just languished with the disease. So, we are fortunate to have it now, with about 70 years of clinical practice and experience preceding our treatments. Best to you, Teri
@artist01 Laurie, I think we should probably be having this conversation in the PMR group. You have certainly been through the wringer with this terrible disease. How are you feeling now? How are you managing everyday activities? How are your bones? My doctor has me taking a low dose of aspirin daily due to the risk of developing an aortic aneurysm down the road with GCA. 30% of those with PMR develop GCA - so I guess there are fewer of us to post. A doctor from the Mayo Clinic, Bayard Horton did some groundbreaking work on temporal arteritis in the 1930s. Years later, in the 50s, steroids were found to offer relief. I read that Dr. Horton's wife developed temporal arteritis. I guess before that, people just languished with the disease. So, we are fortunate to have it now, with about 70 years of clinical practice and experience preceding our treatments. Best to you, Teri
@tsc. Thankyou for your message, Teri. I have a battery of new meds, following the July heart attack, including one baby aspirin daily, blood thinner, blood pressure meds, a pill to calm my heart down, Actemra injections every two weeks for my GCA, and other life saving meds.! You're likely in the same boat.
I do wish there were other GCA patients on Connect. It sometimes feels like I'm the only one in the world
(besides you?) that has this miserable disease. Thankfully, I have an excellent rheumatologist, although she's a two hour drive via Wheels for Wellness. She and her excellent nurses are always available to me by phone, and she watches my weekly lab work carefully in case adjustments are needed regarding the Actemra injections.
You asked how I manage daily activities. Well, they're pretty well nonexistent. I've graduated to going to the dining room unescorted, with my walker, once a day (need a wheelchair after each hospitalization), and I'm now having my daily shower on my own !! No more standby shower with Care Aid.
I think I've mentioned previously that I'm on a wait list for Long Term Care. (I live at an Assisted Living seniors facility right now.)
That's about it for now, Teri. I'm still working hard toward gaining strength and independence. My best to you. Laurie
@hmccarth5 yes, prednisone sure has it’s bad side effects! Ive been on prednisone for 3 1/2 years and now i have osteoporosis and cataracts. But, without prednisone, I’d be dead. As i taper off prednisone, I’m going onto Mycophenolate Mofetil, an immunosuppressant without the side effects of prednisone. But it doesn’t have the ability to knock out infections or inflammation like prednisone does. Prednisone is a lifesaver (but an evil one), to those of us with autoimmune diseases. So, we’re caught between a rock and a hard place.
I have been on and off prednisone or Medrol for over 40 years, I have chronic sarcoidosis. I have had 3 lower back surgeries which I don't know were associated with and numerous bouts of different conditions, all treated with some type of prednisone. Over the years I don't believe I had pain from the prednisone. I am now 78 and have a lot of pain from lower back, bone joints and neuropathy in one foot and calf.
I have been on and off prednisone or Medrol for over 40 years, I have chronic sarcoidosis. I have had 3 lower back surgeries which I don't know were associated with and numerous bouts of different conditions, all treated with some type of prednisone. Over the years I don't believe I had pain from the prednisone. I am now 78 and have a lot of pain from lower back, bone joints and neuropathy in one foot and calf.
Hi @coonass, Welcome to Connect. It sounds like you have been battling sarcoidosis along with some other conditions for a long time. Is the neuropathy in the one foot and calf painful or just numbness and some tingling?
It was very painful at one time, but it was caused by a nerve induction test. At 1 PM I had nothing bothering me or had nothing ever before in my leg or calf, however at 2 PM I had very hard pain in my toes and in a few hours my calf. I had to use a walker for almost a month after the test. Two toes and the calf have pain off and on. So far no one has an answer for what happened.
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@tsc and @hmccarth5. Yes, the evil Prednisone! I have had Giant Cell Arteritis since 2019 and lost most of the vision in my right eye before being hospitalized and given 1000 units of Prednisone by I.V. over a three day period. Had a stroke on the 2nd day (July) and another stroke in September, but Prednisone saved the eyesight in my left eye. Both strokes were classed as small, so did some,but minimal, damage. I was on Prednisone for a year before my new rheumatologist put me on weekly injections of Actemra, a medication specifically designed for GCA. Much easier on the system! I was on both Prednisone and Actemra for several months when my weekly lab results showed that my WBC and neutrophils had bottomed out, and I was immediately taken off both until my lab work crept back to normal. I resumed weekly Actemra injections (no more Prednisone) and over time, all the nasty results of Prednisone disappeared, including the awful weight gain, hair loss, itching, moon face, etc. So happy to be back to my old self! I'm now only on Actemra injections every two weeks and my rheumatologist is VERY pleased with my progress. She didn't even recognize me because she met me at the height of my Prednisone period. So have hope, folks, all those nasty changes in your body will disappear once you're no longer a victim of that lifesaving, eyesight saving Prednisone. It's such a wonderful medication when we are in dire need of it, and we have to be thankful we have it for those critical times in our lives. Laurie ❤
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Hi @artist01, I am so sorry about your eyesight and your strokes. Were you suffering a long time before being hospitalized and diagnosed? Did you get a biopsy of your temporal artery to confirm the diagnosis? I had a couple of incidents where I couldn't see out of my right eye, but they were short - lived and went away. Although my mother-in-law had GCA, and I was familiar with her symptoms, mine were different, and I never thought I had it. Have you noticed that more people post about PMR than GCA? I had PMR first and the pain is something I will never forget. I was wondering when PMR and GCA were discovered and if there was any treatment before prednisone. Good to hear that Actemra is working for you . All the best, tsc
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1 Reaction@tsc. Thankyou for your post. In answer to your questions, yes, I had symptoms of extreme fatigue and achey muscles for several months before the GCA diagnosis. I was in my kitchen at home when I suddenly lost most of the vision in my right eye. A right temporal artery biopsy was done shortly thereafter, confirming GCA, followed by an appointment with my Enterologist, who sent me directly to the hospital from his office. I was hospitalized for three days of 1000 units of Prednisone by I.V. daily over the three day period. As I posted in a prior message, I had a stroke on the second day (July) and a second stroke in September. The strokes were likely the result of the GCA vasculitis, known for causing strokes and heart attacks.
I had a heart attack in July of this year and was hospitalized for three weeks.
My rheumatologist has cut my Actemra injections back from weekly to every two weeks, but my weekly lab work has shown a drop in WBC, Neutrophils and Haemoglobin so I'm waiting to hear whether that's the result of the Actemra cutback. Always something!!
And yes, there sure isn't much posting about GCA, but quite a lot about PMR. I wish there were more Connect members to discuss GCA, a rare and serious disease.
Keep well, tsc. Warm regards, Laurie
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1 Reaction@artist01 Laurie, I think we should probably be having this conversation in the PMR group. You have certainly been through the wringer with this terrible disease. How are you feeling now? How are you managing everyday activities? How are your bones? My doctor has me taking a low dose of aspirin daily due to the risk of developing an aortic aneurysm down the road with GCA. 30% of those with PMR develop GCA - so I guess there are fewer of us to post. A doctor from the Mayo Clinic, Bayard Horton did some groundbreaking work on temporal arteritis in the 1930s. Years later, in the 50s, steroids were found to offer relief. I read that Dr. Horton's wife developed temporal arteritis. I guess before that, people just languished with the disease. So, we are fortunate to have it now, with about 70 years of clinical practice and experience preceding our treatments. Best to you, Teri
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Helpful -
Hug
1 Reaction@tsc. Thankyou for your message, Teri. I have a battery of new meds, following the July heart attack, including one baby aspirin daily, blood thinner, blood pressure meds, a pill to calm my heart down, Actemra injections every two weeks for my GCA, and other life saving meds.! You're likely in the same boat.
I do wish there were other GCA patients on Connect. It sometimes feels like I'm the only one in the world
(besides you?) that has this miserable disease. Thankfully, I have an excellent rheumatologist, although she's a two hour drive via Wheels for Wellness. She and her excellent nurses are always available to me by phone, and she watches my weekly lab work carefully in case adjustments are needed regarding the Actemra injections.
You asked how I manage daily activities. Well, they're pretty well nonexistent. I've graduated to going to the dining room unescorted, with my walker, once a day (need a wheelchair after each hospitalization), and I'm now having my daily shower on my own !! No more standby shower with Care Aid.
I think I've mentioned previously that I'm on a wait list for Long Term Care. (I live at an Assisted Living seniors facility right now.)
That's about it for now, Teri. I'm still working hard toward gaining strength and independence. My best to you. Laurie
Your so right, a real catch 22!
I have been on and off prednisone or Medrol for over 40 years, I have chronic sarcoidosis. I have had 3 lower back surgeries which I don't know were associated with and numerous bouts of different conditions, all treated with some type of prednisone. Over the years I don't believe I had pain from the prednisone. I am now 78 and have a lot of pain from lower back, bone joints and neuropathy in one foot and calf.
Hi @coonass, Welcome to Connect. It sounds like you have been battling sarcoidosis along with some other conditions for a long time. Is the neuropathy in the one foot and calf painful or just numbness and some tingling?
It was very painful at one time, but it was caused by a nerve induction test. At 1 PM I had nothing bothering me or had nothing ever before in my leg or calf, however at 2 PM I had very hard pain in my toes and in a few hours my calf. I had to use a walker for almost a month after the test. Two toes and the calf have pain off and on. So far no one has an answer for what happened.