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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
I was diagnosed a little over two years ago with GCA (Giant Cell Arteritis) and polymyalgia. Down to 1 mg of Prednisone/day, started at 60 mg. Anyone else have this combination?
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I was diagnosed with PMR in 2007. I was on moderately high doses of prednisone for 12 years.
Actemra was called my "best chance" of ever getting off prednisone. Actemra was something of a last resort for me. My rheumatologist didn't want me to take prednisone for the rest of my life.
I was able to taper off prednisone in less than a year after Actemra was started. I don't seem to have any serious side effects from Actemra. I have discontinued five other medications used to treat prednisone side effects. I haven't had any ill effects from being on Actemra but side effects are possible.
I have not been able to stop Actemra because my symptoms return when I do. I have been treated with Actemra for nearly 5 years. My rheumatologist thinks Actemra is a better treatment option for me compared to being on prednisone for the rest of my life.
Treatment with a biologic may not be the best option for everyone but it was a blessing for me. I don't ever wish to take prednisone again unless I need it on a "short term" basis. Prednisone was good in the beginning but I had many medical complications over the long term.
I don't have any experience with Kevzara but it is another biologic similar to Actemra. They are both classified as IL-6 receptor inhibitors.
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1 ReactionHad the bilateral temporal arterial biopsy and was surprised at the size of the incision, however, it looked a lot worse than it felt. The pain was not extreme. Just made everything sore from my top jaw to the top of my head. Only took 2 Tylenol after the procedure and now I feel okay. Will have results for Giant Cell Arteritis within 3 to 5 business days.
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3 ReactionsHello all, pleased to e-meet you. I was diagnosed with PMR and GCA almost exactly 1 year ago, after more than a year of trying to figure out my PRM symptoms and alleviate them with physical therapy (I thought perhaps I had sports injuries). Docs noticed my CRP off the charts, but figured it was pneumonia (?) and I went through rounds of antibiotics to no avail. Chest x-ray revealed aortic involvement and within 24 hrs I was being seen at the hospital (scary). Started on 40 mg prednisolone and have been tapering for a year now; at 6.5 mg presently. Have had to go up and down since I hit 10 mg back in March, that is, having a hard time getting down to, and staying at, 5.
Why am I here? Looking for others who relate, and to get advice and support from, and give it as I am able. My main issues are depression: as you can see from my user name I am way too young for this B.S. according to the general demographics of PMR/GCA. Will I be fighting this off and on for the rest of my life? The thought makes me want to cry. I watched my dad seize up from RA for thirty years, fighting it with every medical tool available (through Mayo, to be honest), until he was basically a frozen man in a wheelchair at 90. Is something like that my future?
I also have symptoms that I can't understand. The worst is the fatigue. Every morning after I wake up, I have to sit with my eyes closed, sometimes for hours, before I can do anything at all. It's different than being sleepy, it's being not able to move. It's not normal, and some days it can be hours. Sometimes I am so exhausted that I walk with my eyes shut, opening them every so often to see if I'm still on the sidewalk. Going to work is torture. My doc wrote it off as a side effect of the prednisolone, but I can't make her understand how debilitating it is. And also if it is a side effect, why did it kick in only when I went to lower doses.
OK, that's me, and I hope to hear from you. I know I am lucky that I haven't had any vision loss, and that they finally caught it, but I feel very discouraged right now. I'd like to end on a high point, so I'll say that I am wishing everyone a good day today.
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4 ReactionsWelcome @gcaunder50, So sorry to hear that you have developed PMR and GCA on the younger side of life. It's bad enough when you are older. I've never been diagnosed with GCA but my docs were always asking if I had any pain around the temples or scalp when my PMR was active. Mine has been in remission for about 5 or so years now for the second time and I'm hoping it stays gone.
@oztrax mentions the fatigue with GCA in another discussion here and may have some thoughts to share with you. Also @tsc and others might also have some suggestions or thoughts on fatigue to share:
--- Giant Cell Arteritis Diagnosis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-diagnosis-1/.
It is understandable to feel discouraged but it is really good news that you haven't had any vision loss. Have you tried making any lifestyle changes to see if that might help?
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4 ReactionsI'm sorry you have an autoimmune condition.
I was diagnosed with PMR at the age of 52.
At the age of 32, I was diagnosed with some other autoimmune conditions called reactive arthritis and uveitis. You can have more than one. Also, you are never too young to have an autoimmune condition. Sadly ... some babies are born with an autoimmune condition.
Overwhelming fatigue at lower doses of prednisolone might be caused by a low cortisol level. It is a side effect of long term steroid use because your adrenal glands stop producing cortisol. It is the reason why we are told to taper off slowly. You should never stop prednisolone abruptly. This allows some time for your adrenal glands to recover but it can take a long time ... sometimes a month or two, sometimes a year or more, and sometimes never.
The following link is hard to understand but the problem is complicated. There is no easy fix except for trying to taper off prednisone slowly.
https://www.ncbi.nlm.nih.gov/books/NBK279047/#:~:text=Adrenal%20suppression%2C%20a%20form%20of,after%20correction%20of%20endogenous%20hypercortisolism.
The symptoms of adrenal insufficiency are wide ranging but feeling "wiped out" summarizes it well.
"Signs and symptoms of adrenal insufficiency often come on gradually and progressively worsen over months. Diagnosis sometimes is delayed because early symptoms can easily be mistaken for something else. The most common signs and symptoms include muscle weakness and fatigue; muscle, joint or abdominal pains; and decreased appetite and weight loss.
In addition, signs and symptoms can include lightheadedness, feeling wiped out by an ordinary illness, depression, nausea, vomiting or diarrhea. Cravings for salt and darkening of skin, especially on the face and hands, or on moles, scars or skin folds, are seen only with primary adrenal insufficiency."
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-understanding-adrenal-insufficiency/
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2 ReactionsHi, So sorry to hear about your early onset of these autoimmune diseases. I know, life can throw a lot at you all at once, and it's very overwhelming (I suffered from severe anxiety since I was 13). One week ago I was diagnosed with PMR and just went yesterday for my GCA biopsy, and now I'm waiting for those results. I beat cancer in 2008, and at that time, I had two younger children 8 & 12, both with disabilities (one very severe); I was absolutely beside myself. She also suffers from severe anxiety, depression, and OCD with major complications to date (not your everyday OCD impulses; something very extreme).
This is what worked for me and my daughter, and I sincerely hope this helps/works for you too:
o I learned over the years to take one day at a time (anything more is too over-whelming).
o Do NOT project into the future (worrying is a waste of time). Visually see and embrace the life you want for yourself.
o Be proactive. If something is not working or working for you, change it. You feel your doctor isn't quite following the path that he/she should be, go for a second opinion. ( I went to 16 doctors/specialists and finally received a diagnosis last week). You know your body better than anyone.
o If you need words of encouragement, people are here for you; you are never alone.
o AND focus on doing something nice for yourself that you enjoy everyday (you owe it to yourself), even if it is just one thing; it makes a difference.
I wanted to share a photo of something I just gave my daughter for her birthday (she just turned 27). She already hung it up in room over her bed. Love the quote.
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7 ReactionsHi @gcaunder50, terrible fatigue is one of the symptoms of PMR/GCA. It can be caused by anemia, the anemia of chronic inflammation. Did 40 mg of prednisone (prednisolone- U.K.?) alleviate your fatigue? Do you get your blood checked regularly? My rheumatologist ordered a monthly CRP. Once it was elevated and I had to increase the prednisone for a couple of weeks before resuming the taper.
Did you speak to your doctor about increasing the prednisone to see if your fatigue lessens? You just may need a higher dosage for a while. Also, the rheumatologist told me to take low dose aspirin everyday as those with GCA can be prone to aortic complications, like aneurysms.
I'm 72, had symptoms for a year before being diagnosed with GCA/PMR. It was debilitating. I was thankful to be retired because working would have been so difficult. It's very depressing, the memory of pain stayed with me, left an imprint, and made me hesitant to do much. I thought I would never get out of the black hole I was in, but I have. Now I just have normal aches and pains. I have a brighter outlook but for a long time, it was very dark and morbid.
Is there someone you can talk to? Do you have support from family and friends? It's a hidden disability - pain on a scale of 10 out of 10, the whole body sore and stiff, no appetite or energy. We don't look disabled so those not in the know may think we're malingering. Did you ask your employer for any accommodations? We have to be our own advocates and the doctors don't understand everything about these diseases. We don't all follow the textbook symptoms.
It may help you to keep a journal.
I was able to get off prednisone after a year and a half, and it will be one year off in October.
PMR and GCA are viewed as self-limiting diseases that eventually resolve, sooner for some than others. Feel free to post when things really suck!
I wish you the best.
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5 Reactions50 is pretty young, I was 54 and struggled along as a oil refinery lab tech for a couple of years till I decided to retire at 56, could have gone out on disability but was to hard headed to do so. I’m now 62 and don’t believe I will ever not have PMR
I haven’t posted in a while because I’ve been waiting for something new to report. I finally got an appointment last week with a rheumatologist after calling a couple of times to check on cancellations (wait list). If you’re waiting to see a rheumatologist for the first time, this is VERY important and helpful. I was tactful and polite, but I was persistent. I made sure to confirm with the office staff that I wasn’t being a nuisance. Just being on the wait list often isn’t enough. As the appointment employee told me, “The early bird gets the worm.” I’ve been waiting since June, so this wasn’t too bad. My original new patient appointment was for January 2, 2024.
Results: I now have a diagnosis of PMR and moderate suspicion of GCA. I am on 60 mg. of prednisone preventively until the GCA biopsy is scheduled (very soon, they told me). I feel much better PMR-wise since starting the higher dose of prednisone. My PCP had given me short bursts of 20 mg. but then tapered too quickly, maybe, to 15 mg. and 10 mg., which did little to help. An unexpected benefit: my very arthritic wrists and thumb joints feel much better too. Overall pain level of PMR has gone from 8-10 to 3-4 on a 0-10 scale.
To those discussing fatigue, I had that kind of debilitating fatigue, especially early in the day, with untreated PMR. Once I got to 20 mg. prednisone, it was significantly better. I still hit a wall in late afternoons sometimes, but I’m also already much more active again. I pace myself and try to remember to rest. Not feeling nearly as tired on the temporary 60 mg. dose.
I’m very hopeful again. I’ll let you all know how the biopsy comes out. So far I’m lucky with prednisone, no terrible side effects, sleeping well most nights, feeling able to function again as long as I pair that with enough breaks/rest. I was able to walk moderately briskly 3/10 of a mile last night. A real breakthrough. Before all this, 2 miles a day was nothing. (I’m 69.)Good luck to everyone posting here. I know it’s overwhelming and have been discouraged and overwhelmed for about six months— until now. I found a wonderful, smart, knowledgeable rheumatologist who listens well. Key point. Thank you all— your support and sharing is lifesaving.
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2 ReactionsHi! I am in the black hole. How did it resolve itself? Just giving it time? I hate to up the 20mg because treatment with prednisolone is what is causing the problem. I have been treated since April and I seem to be going in the wrong direction. No matter what I try I am incapacitated and feel like another creature. Just interested in how you resolved it all. I have blood checked routinely but dr has not suggested upping dose. He says to stay at 17.5 but have increased to 20 mg
I am really alone in all this. Just trying to figure it all out.