1. < Polymyalgia Rheumatica (PMR)
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Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

Posted by charann2000 @charann2000, Apr 25, 2018

Anyone out there who has been diagnosed with Temperol Arteritis (Giant Cell Arteritis). I am undergoing testing and most likely have it. Would like to know how anyone is doing with it and what type of medications they use and any side effects, etc.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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sassysaveur | @sassysaveur | May 31 6:45am
In reply to @johnbishop "Hello @charann2000 There is currently another active discussion on giant cell arteritis here that you may..." + (show)
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Hello @charann2000

There is currently another active discussion on giant cell arteritis here that you may want to read through:

I’m tagging a few other members who have talked about giant cell arteritis to see if they can join in the discussion – @kari51, @marylynn, @crhp194 and @morninglory do you have any information that you can share with @charann2000 on giant cell arteritis?

I'd like to invite @crhp194 @morninglory @anya @sallygosse to join this discussion, as well; they may be able to provide some more insights. We have another conversation on GCA, (also known as temporal arteritis), which you might wish to view:
– Adjusting to life with temporal arteritis https://connect.mayoclinic.org/discussion/would-like-to-hear-from-people-that-have-gone-thru-or-going/
I hope @donnalc @lindy @prednisone4gca @MLeeB also return to share their experiences.

@charann2000 — do you have any questions about giant cell arteritis?

John

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@johnbishop tag me too. I can’t seem to join or follow the GCA group which is what I desperately need. Thank you.

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Mentor
John, Volunteer Mentor | @johnbishop | May 31 7:11am
In reply to @sassysaveur "@johnbishop i’ve been following the PMR group because I cannot find the GCA group in the..." + (show)
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@johnbishop i’ve been following the PMR group because I cannot find the GCA group in the listing. Are you able to connect me so that I can follow and contribute to the GCA group? A link that I can then hit follow. I definitely need support around the GCA. Thank you
All right, let

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@sassysaveur, Currently Giant Cell Arteritis (GCA) does not have it's own support group, it is included in the PMR group. The good news is that there are many member discussions on GCA. Here's a search of Connect that lists the many discussions and member comments - https://connect.mayoclinic.org/search/discussions/.

If you don't see what you are looking for, you might consider starting a new discussion to connect with members who may have some experience or information to share with you. Also, the search function on Connect is really great at finding others with similar symptoms or questions they are trying to get answered.

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ptz71 | @ptz71 | May 31 5:17pm
In reply to @ptz71 "@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks..." + (show)
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@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks of 70/60 mg prednisone, and delay in getting biopsy. Im seen at a university teaching hospital where my rheumatology appointment was finally brought forward. Treated now with oral prednisone in addition to Actemra , one infusion so far.
I have had some improvement, but also carry other autoimmune disease diagnoses (Primary Selective IgA deficiency, Warm autoimmune Hemolytic Anemia, celiac disease, malabsorption syndrome, falling IgG levels, autoimmune ovarian failure at age 32, etc, etc, and multiple other diagnoses.
All of this to say I continue!!!! I adapt to these changes on an hour by hour basis after many years of struggling against them. Im unable to use opioids due to severe reactions. However, my support system carries me through, and am learning so many ways of coping. Couldn't and wouldn't do this without my husband of 41 years, meditation and prayer, a small but constant group of caring friends and strong medical support. Although I am DNR and my life has been saved from septic shock recently, I feel blessed to be alive in a broken body and experience whatever life sends.
May YOUR experience improve, and hope is my byword....there is something good in every hour of every day.

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Thx for the hug! This site has provided wonderful support and I appreciate
you!

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ptz71 | @ptz71 | May 31 5:18pm
In reply to @ptz71 "@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks..." + (show)
Profile picture for ptz71 @ptz71

@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks of 70/60 mg prednisone, and delay in getting biopsy. Im seen at a university teaching hospital where my rheumatology appointment was finally brought forward. Treated now with oral prednisone in addition to Actemra , one infusion so far.
I have had some improvement, but also carry other autoimmune disease diagnoses (Primary Selective IgA deficiency, Warm autoimmune Hemolytic Anemia, celiac disease, malabsorption syndrome, falling IgG levels, autoimmune ovarian failure at age 32, etc, etc, and multiple other diagnoses.
All of this to say I continue!!!! I adapt to these changes on an hour by hour basis after many years of struggling against them. Im unable to use opioids due to severe reactions. However, my support system carries me through, and am learning so many ways of coping. Couldn't and wouldn't do this without my husband of 41 years, meditation and prayer, a small but constant group of caring friends and strong medical support. Although I am DNR and my life has been saved from septic shock recently, I feel blessed to be alive in a broken body and experience whatever life sends.
May YOUR experience improve, and hope is my byword....there is something good in every hour of every day.

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Thx, hugs are always great, and I appreciate your support!

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clendenin | @clendenin | Jun 1 9:31am
In reply to @ptz71 "@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks..." + (show)
Profile picture for ptz71 @ptz71

@dianedenise Im dealing with GCA as well. Temporal artery biopsy was negative due to 3 weeks of 70/60 mg prednisone, and delay in getting biopsy. Im seen at a university teaching hospital where my rheumatology appointment was finally brought forward. Treated now with oral prednisone in addition to Actemra , one infusion so far.
I have had some improvement, but also carry other autoimmune disease diagnoses (Primary Selective IgA deficiency, Warm autoimmune Hemolytic Anemia, celiac disease, malabsorption syndrome, falling IgG levels, autoimmune ovarian failure at age 32, etc, etc, and multiple other diagnoses.
All of this to say I continue!!!! I adapt to these changes on an hour by hour basis after many years of struggling against them. Im unable to use opioids due to severe reactions. However, my support system carries me through, and am learning so many ways of coping. Couldn't and wouldn't do this without my husband of 41 years, meditation and prayer, a small but constant group of caring friends and strong medical support. Although I am DNR and my life has been saved from septic shock recently, I feel blessed to be alive in a broken body and experience whatever life sends.
May YOUR experience improve, and hope is my byword....there is something good in every hour of every day.

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@ptz71 thanks for this post. I needed it. It insidious these diseases. I too have GCA but severe polymyalgia rheumatica which focus on my shoulders and sometimes pelvic girdle, now it’s moved to my face, teeth and tongue. I was fantasizing about getting the pliers out of tool box when I read another article about GCA masquerades as TMJ or pinched nerves and is often misdiagnosed. My temporal biopsy was negative too, but that’s the call. I started steroids then tapered along with Actemrya weekly shots. Then about a month ago we tapered off the ACT and jaw pain started up. After some blood work, nothing too elevated so I’m not sure how we plan to deal with the facial issues, but it important if this fires up to calm it down. Our hearts especially need a friend, and something to hope for…

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clendenin | @clendenin | Jun 1 9:39am

Hello, and thanks for posting. I just posted in another space about how after tapering the biologic post- two years of weekly injection when I started feeling TMJ like pain on my left side-same side as last outbreak two years ago. Tooth pain, burning tongue and painful jaw. We started steroids again at 40, now I’m down to 30 mg with some called Lyrica. It’s helping the jaw pain but you sure can’t drive with it.
The pharmaceutical buffet here is not desired. But any help navigating this is helpful. I use FECO for pain, with a full extract cannabis oil that can go directly on your skin, salivary glands or eat it. Ingesting cannabis takes schooling though, because it undergoes another transformation in the liver causing it to magnify the high potentially. So edibles are not as simple as a dab on the cheek. I smoke it too so I can eat, the muscle wasting is for real. Community with friends, dogs, hot baths, anything to cling to for hope…

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cathie1 | @cathie1 | Jun 2 11:04am

I just joined this Mayo Clinic Group and am most thankful for the opportunity for information and resources.I was initially diagnosed with PMR but actually then diagnosed with Giant Cell Arteritis and treated with Actemra infusions with a good response.i have just recently suffered another episode and am ring treated with Prednisone which is being tapered .Also receiving monthly infusions of Actemra and Prednisone is being reduced.Is there a separate chat group here for patients with Giant Cell Arteritis Cathie1

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clendenin | @clendenin | Jun 2 11:16am

Predinisone at high doses, and a weekly biologic called Actmyra. Side effects are minimal for the biologic, but the steroids are another story. If you want my journey let me know because not everyone goes bananas. But I do, so it’s bigger bear to manage initially but the benefit is felt so you just have to flow with it. Someone used the term burn it out, if you also develop PMR.
I find medical marijuana, Rick Simpson oil in particular, to be helpful. It can be taken in tiny doses via the salivary glands, eaten as an edible or used directly on skin. That’s all for meds for now, but the pain is there nd that discussion is next with my Rh. Take care of yourself, lots of grace and space.

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sassysaveur | @sassysaveur | Jun 3 6:10am
In reply to @cathie1 "I just joined this Mayo Clinic Group and am most thankful for the opportunity for information..." + (show)
Profile picture for cathie1 @cathie1

I just joined this Mayo Clinic Group and am most thankful for the opportunity for information and resources.I was initially diagnosed with PMR but actually then diagnosed with Giant Cell Arteritis and treated with Actemra infusions with a good response.i have just recently suffered another episode and am ring treated with Prednisone which is being tapered .Also receiving monthly infusions of Actemra and Prednisone is being reduced.Is there a separate chat group here for patients with Giant Cell Arteritis Cathie1

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@cathie1 I asked this question as u too had PmR and now being treated for GCA. Theee is not a separate support group it is included in the PMR group. You can search within PMR group to find GCA info

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gailcha | @gailcha | Jun 3 3:50pm

GCA diagnosis in March. Rh titrated me down to 7.5 mg prednisone and stopped methotrexate last week. Had 2 monthly Actrema infusions and on Rinvoq. Jaw and temple pain started again today. Called office but on vacation for week. Seems like maybe meds are being lowered too quickly. Thoughts?

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