Giant Cell Arteritis

Posted by dappy @dappy, Sep 20 5:58pm

I was diagnosed with GCA end of July. Am on a tapering of Prednisone. I also am on Prolia for osteoporosis. I will get my next Prolia Nov. 30. I understand Prolia also suppresses your immune system. I was on a year of Evenity before being on Prolia now 2 years. I will start on Actemra whenever my insurance approves it for GCA.
My question is: I wonder what is the best osteoporosis drug to take if you are on Actemra for GCA. This is all new and overwhelming to me. Thanks!

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Actemra shouldn’t interfere with your osteoporosis
medication. It may have positive effects on inhibiting
bone resorption since it inhibits IL-6. It is not likely to interfere with other antibodies.

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Profile picture for seniormed @seniormed

Actemra shouldn’t interfere with your osteoporosis
medication. It may have positive effects on inhibiting
bone resorption since it inhibits IL-6. It is not likely to interfere with other antibodies.

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@seniormed, do you know if Prolia, though, will further suppress my immune system?

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I have Seronegative RA and "presumed" PMR. I am currently on 10mg Lefluonomide and 5 mg prednisone. I'm also on Prolia - thanks to prednisone. Neither my Enochronologist or Rheumy ever mentioned that the Prolia would suppress my immune system. Starting tomorrow I have to increase my prednisone to 60mg because I am showing symptoms of GCA. (great...)
It will be October 2nd before I can get in to have a consultation with the general surgeon to do a biopsy. I'm SO upset about having to take this much prednisone. It's going to kill me. It put me into HFpEF, a "heart failure" that makes my diastolic pressure work harder, osteoperosis, and pulmonary hypertension. I really don't want to take it but promised my doctor I would until we got the biopsy.
Please let us know what you find out about the immune suppression. I wish you good luck on your taper as I know how difficult it can be.
Terri

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Profile picture for rocksology @rocksology

I have Seronegative RA and "presumed" PMR. I am currently on 10mg Lefluonomide and 5 mg prednisone. I'm also on Prolia - thanks to prednisone. Neither my Enochronologist or Rheumy ever mentioned that the Prolia would suppress my immune system. Starting tomorrow I have to increase my prednisone to 60mg because I am showing symptoms of GCA. (great...)
It will be October 2nd before I can get in to have a consultation with the general surgeon to do a biopsy. I'm SO upset about having to take this much prednisone. It's going to kill me. It put me into HFpEF, a "heart failure" that makes my diastolic pressure work harder, osteoperosis, and pulmonary hypertension. I really don't want to take it but promised my doctor I would until we got the biopsy.
Please let us know what you find out about the immune suppression. I wish you good luck on your taper as I know how difficult it can be.
Terri

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@rocksology
That’s a large dose for sure.
I called my Rheumatologist office to tell them I’m having some slight symptoms of giant cell arteritis, the nurse called me and said go to the ER.
Not what I wanted to hear from my doctor.

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Profile picture for ga29 @ga29

@rocksology
That’s a large dose for sure.
I called my Rheumatologist office to tell them I’m having some slight symptoms of giant cell arteritis, the nurse called me and said go to the ER.
Not what I wanted to hear from my doctor.

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@ga29 When I was diagnosed with PMR and suspected to have GCA, my rheumatologist put me on 60 mg. of Prednisone daily. I hadn't had a temporal biopsy yet, but out of an abundance of caution he prescribed it. I had all the classic symptoms of GCA. The potential for blindness was enough for me to accept the dosage. I was on 60 mg. for 6 weeks and then began my taper. After a year and a half I tapered off of Prednisone. The last 10 months of my taper were assisted by Actemra infusions. I've been taking the infusions for 19 months now. I wish you the best.

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Profile picture for ropnrose @ropnrose

@ga29 When I was diagnosed with PMR and suspected to have GCA, my rheumatologist put me on 60 mg. of Prednisone daily. I hadn't had a temporal biopsy yet, but out of an abundance of caution he prescribed it. I had all the classic symptoms of GCA. The potential for blindness was enough for me to accept the dosage. I was on 60 mg. for 6 weeks and then began my taper. After a year and a half I tapered off of Prednisone. The last 10 months of my taper were assisted by Actemra infusions. I've been taking the infusions for 19 months now. I wish you the best.

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@ropnrose thank you for your response! I’ve read about others whose doctor did the same. My doctor has disappointed me with his lack of care.
I’ve read up yesterday, on specific side effects of prednisolone. Some of which can explain the symptoms I’m having, vision problems, headaches, among many others. So I’m not as worried as I was? I’m not having blinding headaches, just achy eyes, some dryness and blurry vision when trying to read.
I’ve called another rheumatologist in another city nearby, I’m going to try for a consultation with her. We don’t have any in my city.

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I’m also on Prolia. I wasn’t able to take evinity due to my blood thinning medication.
I think Prolia is the next drug for osteoporosis.

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Profile picture for ga29 @ga29

@rocksology
That’s a large dose for sure.
I called my Rheumatologist office to tell them I’m having some slight symptoms of giant cell arteritis, the nurse called me and said go to the ER.
Not what I wanted to hear from my doctor.

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@ga29 Suspected GCA is an emergency and your doctor's office is not prepared to manage medical emergencies. You belong in an ER and you need to make sure the ER doctor is trained in how to Dx and treat GCA. My ophthalmologist has told me I should call them when I head to the ER so they can intervene as need to make sure I receive proper GCA treatment.

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Within 48 hours on the 60 mg prednisone my 2-week headache and scalp pain were completely gone.
Is that a good thing (yes the pains gone) or a bad thing (probably means it’s GCA)?

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Profile picture for rocksology @rocksology

Within 48 hours on the 60 mg prednisone my 2-week headache and scalp pain were completely gone.
Is that a good thing (yes the pains gone) or a bad thing (probably means it’s GCA)?

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@rocksology Not necessarily. How long did you have those symptoms? Did you have visual disturbances or jaw claudication? If not they either caught it in time or it's something else.

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