Hello, I was diagnosed with GCA this past April in the emergency room. I was experiencing lightening jolts of pain on the right side of my head and had very high inflammation markers. I am trying to taper my prednisone and am currently on 27.5 mg and 15 mg methotrexate weekly.
My concern is that my legs and arms are very heavy and weak and have been since GCA diagnosis. Is this part of GCA or some other type of vasculitis? Is it reasonable to ask my rheumatologist for a scan to see the extent of inflammation? Should I be concerned about an embolism or aneurysm?
I also have had a cough, sometimes productive, since my diagnosis. I have chest heaviness and a fluttering feeling in my bronchi. In December of 2023, I had a CT scan showing “scarring at lung apices and mild scattered nonspecific ground glass densities. There are linear foci of atelectasis of scarring”. I see a pulmonologist in November. I’m hoping for some answers. Any suggestions regarding the pulmonologist visit would be helpful.
I appreciate hearing your thoughts and experiences. Thank you!
Written by
Moaningxcat
To view profiles and participate in discussions please or .
Thank you, DorsetLady Lady. This disease is confounding…. I don’t want to be unreasonable, but I would like to get a full picture of what I’m dealing with.
I am so glad you are here. This forum educated and supported me when I started my GCA journey. It made me a better patient and advocate for myself. You are asking just the right questions.
I'm in the States, and Methotrexate was never part of my treatment, Prednisone and Actemra. It simply is a confounding disease, as you said. From others, I learned to expect the unexpected, and there seems to be nothing we can do, nap, or walk?...that directly affects the course; it has a strong mind of its own....but know it gets better.
I experienced the heaviness you speak of and sometimes still do but my circulation was fine when checked. Most of my body changes I attributed to Prednisone as my dosage would roller coaster. It is a tough med but what if we didn't have it? One other thing, do you take any blood pressure meds? It is quite common for that to cause a cough. Your lung scarring may be from previous viruses. You are doing the right thing to have ALL checked out; you need to be reassured.
Write all your questions down for the rheumy, every single one, he/she will take a seat.💞
You are so sweet, Grammy 80!! Thank you so much for sharing. I’m in the States too. My rheumatologist prescribed methotrexate as a prednisone sparing drug. She wanted me to taper quickly, but I am following Dorset Lady’s taper schedule and being tuned in to my symptoms regarding further tapering. I appreciate your support regarding the questions I have for my rheumatologist. I want to advocate but do not want to be reasonable.
I’m not on any blood pressure drugs and, hopefully, the lung scarring is from a previous virus. It is difficult to tell sometimes whether symptoms are from prednisone or GCA. I agree that prednisone is nasty, but what else do we have to combat the inflammation…
You are very wise to follow DL's taper...very. When I began my journey the rheumatologist helf off prescribing Actemra because I had a history of diverticulitis and two stomach bleeds. But, I was taking 125mg per day, after pulse therapy, and my numbers just wouldn't go down. A lady friend who was a nurse practitioner, retired, was taking me to the hospital and Dr. appointments. On the 'third' infusion, my friend found the doctor had made an error and gave me only 100mg on my first two trips..and only on the third trip to the hospital did I receive the 1000mg I was supposed to have been getting each day.
With my friend present, I was kind of a mess with no family around. Doctor explained Actemra, all the risks etc. but my GCA was like a raging bull...it wouldn't chill out. It took a few weeks on Actemra and I really can't remember how and when I tapered. I had no side effects and it helped.... I know that doesn't mean it is for everyone, but might be worth adding to the list of questions.
I'm prednisone whindy, gabby. Be well, and you will be💞
I truly did!! Actemra is not a magic bullet for everyone, but it worked for me. In the beginning (much of which is a daze), after the 125, it was 80 per day; finally, I got to 40mg and could think straight. We are fortunate in the States because all these great Brits can only get it for a year with GCA. I believe that sometimes, it is reviewed and extended. It just so happened that my rheumatologist is not a fan of Methotrexate. We are all unique, and I think it is worth trying. My insurance pays for it 100% after I make one co-pay of $45 per year. 💞
I agree with Oztrax - I see I missed replying to your post earlier - been travelling so didn't get on the forum. But I had I done so I also would have queried the GCA diagnosis since you have chest problems and it is something to put to the pulmonologist. In that case, Actemra would not be the first line approach - rituximab and conventional immunosuppressants are used and only if they fail or you react to the rituximab might Actemra be tried and that is quite rare.
Thank you, PMRpro. I plan on suggesting further tests to see what is going on. I do think I have GCA as I had the head splitting pain on the right side of my head , still have some scalp sensitivity and aches. However, I think something else is going on too.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Alternative name for high dose Prednisone = Chemotherapy
Vasculitis and PMR
Raynauds and Vasculitis 
Insights into ANCA vasculitis Tx, etc
Could this be vasculitis?
