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GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)
Polymyalgia Rheumatica (PMR) | Last Active: Oct 25 10:20am | Replies (277)Comment receiving replies
Hello 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.
Replies to "Hello all, pleased to e-meet you. I was diagnosed with PMR and GCA almost exactly 1..."
I'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/
Hi, 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.
Hi @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.
50 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
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Welcome @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?