Giant cell arteritis:I’m afraid and would appreciate any advice

Posted by anya @anya, May 5, 2017

In April of 2015 I was diagnosed with polymyalgia and giant cell arteritis and was put on 60m of prednisone daily.<br />After a month my rheumatologist began a slow taper of the prednisone and added methotrexate to help with the withdrawal but had to discontinue the methotrexate because of side effects. In April of 2016 I was put on monthly infusions of Actemera and tapered to 1m of prednisone daily and was doing well.

However, in Nov I developed stiffness in my neck and shoulders. Prednisone was increased to10m daily. In Jan prednisone was lowered to 9m but has not been lowered since even though doctor says my labs all look perfect.

At this point I'm losing faith in my doctor and not sure how to proceed with treatment. Because I have no family or support system in this country I have no one to discuss this with so I'm hoping someone out there can give me some insight.

I've recently been diagnosed with Sjorgens syndrome and was told treatment was the same as PR and GCA. so nothing further need be done. I'm now dealing with facial pain, fatigue, chronic constipation, swelling in my legs and hands and insomnia.
My recent lab tests show high bilirubin scores, high total neutrophils, plus low eosinophils absolute, low monocytes, and low monocytes absolute. I don't know what all that means but when I question my rheumatologist about it she does nothing to alleviate my fears and just says "your labs all look perfect" and maybe you should see a therapist.

I'm very afraid of what is happening to me and would really appreciate advice from anyone out there with knowledge and information about my health problems.
Thank you
Anya

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

geniecm | @geniecm | Feb 20, 2020

Input on tapering Prednisone.

Ethan McConkey, Moderator | @ethanmcconkey | Feb 20, 2020

Hi @geniecm you may have noticed I moved your post to this existing discussion on Giant Cell Arteritis so that you can connect with others who have similar experiences.

I'd like to thank @johnbishop and @tinkerbell for sharing their thoughts on this topic. How long have you been on prednisone? What suggestions has your doctor been giving you?

geniecm | @geniecm | Feb 21, 2020

In reply to @ethanmcconkey "Hi @geniecm you may have noticed I moved your post to this existing discussion on Giant..." + (show)

I am on Prednisone since 8/19. .. down to 15 mg. from 50. Just yesterday I saw a doctor at Hospital for Special Surgery in NYC. She has prescribed Actemra and I've been approved. I will now change Rheumatologists.

geniecm | @geniecm | Mar 6, 2020

In reply to @ethanmcconkey "Hi @geniecm you may have noticed I moved your post to this existing discussion on Giant..." + (show)

My new rheumatologist at HSS in NY prescribed Actemra. Went for training lesson today and gave myself my first shot.

jfarreast | @jfarreast | Jun 1, 2020

Greetings. Two weeks ago I woke up one morning having lost sight in my right eye. 79 years old female, western European ancestry. This has led to a diagnosis of Giant Cell Arteritis, NonArteritic Ischemic optic nephropathy and probably PMR. Seems they go together. I have had the pain for years and was on a low dose of prednisone for 3 years so have not had too much sever pain. I am having migraines and auras. I was immediately put on 60mg prednisone as my left eye was at risk. I'll taper down to 10mg for life they say. I am exceedingly grateful for prednisone and do not see it as the devils medicine. I already have osteoporosis so will continue to support my bones as much as possible, as well as low dose med to keep blood sugar stable. I am not diabetic. I have long history of AFIB and beginning to have some vasculitis in LAD and beginning in my legs. So it all ties together.
I'm here to learn from you who have more experience but all in all, I can do this. My main goal to to remain as pain free as possible and to keep my sight as long as possible.

John, Volunteer Mentor | @johnbishop | Jun 1, 2020

Hello @jfarreast, Welcome to Mayo Clinic Connect. I have been tested for Giant Cell Arteritis (GCA) during both times my PMR was active but fortunately didn't have it. I was thankful for prednisone also but was happy that I was able to taper off both times.

You may also be interested in the following discussion where @mlbondurant @pslabels @marcog and other members have shared information about Non Arteritic Ischemic optic nephropathy: https://connect.mayoclinic.org/discussion/non-arteritic-ischemic-optic-neuropathy/

I found an article on the Glaucoma Today website that you may find helpful - NAION: What to Do and When: https://glaucomatoday.com/articles/2019-jan-feb/naion-what-to-do-and-when

Have you made any lifestyle type changes to help yourself?

123suew | @123suew | Aug 7, 2021

I have polymaligia and had systems of giant cell before starting prednisone . I am noe off predison. I have a bad itching under my arms with no rash or swollen limpnods.

123suew | @123suew | Aug 7, 2021

Does anyone else with giant cell have this? Sorry email broke up!

Teri | @tsc | Aug 8, 2021

In reply to @123suew "Does anyone else with giant cell have this? Sorry email broke up!" + (show)

Hi @123suew, I had about 3 -4 weeks of itching on my torso and scalp a month or so before I was diagnosed with GCA. It hasn't returned since I've been on prednisone. Itching is not one of the symptoms I've seen associated with GCA in articles I've read, but itching is a sign of inflammation and both PMR and GCA are inflammatory disorders.

In the past, whenever I used a deodorant that had aluminum chloride (I think that's what it is) I had severe itching under my arms. Have you changed any of your hygiene products lately?

I hope that helps.