Prednisone Taper Stories

@pah17 Please be careful regarding possible GCA. I came close to losing some vision. so it makes me feel uneasy when I think about someone having untreated GCA. I didn't get my PMR and GCA diagnosed for several months because I made various excuses for my symptoms, like they were because of aging. sinus infection, etc.

I have read that headaches from GCA can occur anywhere on the head. I didn't have any headaches, but I did have mild scalp tenderness. I had several other symptoms too, like fever, pain in the cheekbones, night sweats, and jaw claudication.

It's good you are getting checked by an ophthalmologist. It was very reassuring to me when the ophthalmologist told me that I didn't have any permanent damage from the GCA.

I had mild afib when I was on high doses of prednisone (> 40 mg). It faded away as I tapered.

@jeff97 that is so helpful. It makes me feel less of a hypochondriac in reporting such subtle discomfort. I think I'll be on 40 mg of Prednisone for a while yet which if I understand correctly gives me a measure of protection. The other thing is that my PMR was somewhat atypical in that I never had any upper body pain. My pain was hips and thighs with prolonged morning stiffness and difficulty maneuvering up and down like getting out of a car.
How were you treated for GCA? Prednisone only?

@pah17
Because I had an emergency where I was losing the vision in my left eye for a few seconds at a time, I was hospitalized and received an IV of high dose methylprednisolone each day for 3 days. After that I was on 60 mg prednisone per day for 6 weeks. I also started taking weekly injections of Actemra 6 weeks after I was diagnosed. It took a year for me to taper off of prednisone, but I'm still taking the Actemra injections.

40 mg of prednisone is a common starting dose for someone with GCA who doesn't have vision problems or other serious symptoms. You need to stay at the starting dose for a while to let your body recover. If you do start taking Actemra, it can take up to 3 months for the Actemra to take full effect. The prednisone protects you during that time. Then your doctor can prescribe a taper based on your situation.

I had stiffness like you describe before having GCA symptoms. I also had stiffness in my shoulders and neck. My shoulders would get very tired when I was out walking, and I had trouble driving because of the neck stiffness. I couldn't physically sneeze for a couple of weeks because the muscles between my shoulders were too stiff.

@jeff97 again hearing your story helps me a lot. Thank you. My doctor did ask if I would consider Actemra. I need to see if my Medicare Advantage plan covers it.

@pah17 You've probably seen the posts about Actemra, but there are different ways to get it covered, depending on the insurance. Infusions of Actemra are covered under Part B of Medicare by some plans, and injections under Part D. Tyenne is a biosimilar to Actemra, and is covered by some plans.

I'd like to update to my original post. I went for a follow through with my Rheumo after the first attempt to taper down from 15 mg. My repeat labs had shown an increase in the sed rate (30/85) and a decrease in the CRP (67/34). When he asked about headaches and scalp tenderness, I answered that I often get afternoon headaches and my scalp is sometimes tender. I couldn't really answer how long this has been going on. This heightened his concern about GCA and my dose was increased to 60 mg. Mind you, my headaches are a dull ache on the crown of my head, not the temples and far from acutely painful. But because of my inflammatory markers, my response couldn't be ignored. I've had another follow up and my markers are going in the right direction. Sed rate: 20 and CRP: 3, however, he is still concerned about GCA. Since I'm doing well, he's reduced my 60 mg. to 40 mg daily, but he did strongly recommend the biopsy which I declined. The plan of care now is to repeat labs in 10-12 days and follow through in a month. I assume that we will discuss tapering at that time.
He also asked if I would consider Actemra, if my insurance covers it. I said yes, but I'm really not sure. I will see my Optometrist in a few weeks and maybe she will give me a little different perspective. My gut wants to think that my dull scalp discomfort is any number of benign things from BP and Blood Glucose fluctuations, to a constant state of hunger from the Prednisone, to dehydration and just plain old ordinary stress (all things considered). I also have a new diagnosis of atrial fibrillation and the Prednisone and lack of sleep is certainly not helping my irregular heart beats.
By the way I do have idiopathic small fiber neuropathy which has been less of a concern in terms of discomfort, but lately it seems more pronounced since my PMR pain is relieved overall. My complaint is numbness and tingling down my calves and feet which is a far cry from the pain of PMR. I take Gabapentin 300 mg at bedtime.
So, at this point not only am I interested in the taper stories, but GCA experience.
Thanks for hanging with me.

@pah17
Has anyone suggested you get an ultrasound of the temporal arteries? I was diagnosed with GCA after a month or so with symptoms that I attributed to other things. It was when the pain got severe that I was sent to urgent care and the MD there immediately suspected GCA and saw a "halo" on ultrasound. I did later have a biopsy which was negative so was tapered off prednisone. Unfortunately within a week of being off prednisone I lost some vision permanently in one eye. Then it was an emergency and I had infusions of 500 mg prednisone 3 consecutive days. It’s good that you are being followed closely. Best wishes to you and please be safe.

@janb62 the biopsy has been recommended but I declined. I want to see what my optometrist has to say. Thank you very much for your input and concern.

@jeff97 Thanks. How are you doing by the way? Are you out of the woods completely now?

@pah17 I'm still taking weekly Actemra injections. I'll be taking them weekly for 4 more months, and then every other week hopefully for another year. That will be 3 years of treatment. I haven't had any symptoms or flares of the PMR and GCA since I started treatment. It took a few months after stopping prednisone before I felt completely recovered from the prednisone. I'm feeling good in general, just not as much energy as I had hoped. That's something I'm trying to figure out.