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Posts (127)

Thu, Feb 20 7:47pm · Giant cell arteritis in Polymyalgia Rheumatica (PMR)

This is Tinkerbell. I had Giant Cell Arteritis and was diagnosed in the Emergency Room at Mayo Clinic in Jacksonville, Florida. I was started on 60 mg. Of prednisone the day I was seen in the Emergency Room. I came down 10 mg. Every 2 weeks. When I got to 20 mg. The problems began. I went down to 17 1/2 mg. And had problems right at the beginning. I had to go back to 20 and then start down at 1 mg. Every 2 weeks. I was on the prednisone for 1 1/2 years. If you have any questions I will try to answer them.

May 21, 2019 · Medications for Temporal Arteritis/Giant Cell Arteritis (GCA) in Autoimmune Diseases

@jhinia – Right now the important thing is to get to 20 mg. You should be able to sleep once you get there at least that is what happened to me. The one recommendation I read early on was to never go down more than 10% at a time after 20. Maybe I should have gone to 18 and it would have worked. I was so upset about the problems at 20 mg to 17.5 that I was scared to do anything else but the 1 mg. It worked and I eventually got off without any problems. Always remember slow is good.

May 20, 2019 · Medications for Temporal Arteritis/Giant Cell Arteritis (GCA) in Autoimmune Diseases

@jhinia – I agree with Charann about not having another biopsy. I have permanent numbness from the cut to the cheekbone. Also, I was told to take my Prednisone every morning and not to split the dosage up. Be very careful on your taper. I had a problem going from 20 mg. It was suggested that I go to 17 1/2 and I had problems and had to back up to 20 mg. After that I went down 1 mg every 2 weeks. This really slowed the taper down but in the end I did get off of it in October 2018.

May 18, 2019 · Medications for Temporal Arteritis/Giant Cell Arteritis (GCA) in Autoimmune Diseases

@jhinia – Hi from Tinkerbell. I finished my taper for GCA last October. I had a terrible problem sleeping from 60 mg. To 20 mg. I was told to try lavender oil on my feet. My feet smelled good but it did not help with the insomnia. I went down 10 mg every 2 weeks so you just need to hang in there. Also, I had never had problems sleeping until I got on the Prednisone. It seems to be a common problem. If you have any other questions I will be happy to try to answer your questions. I was on Prednisone 1 1/2 years.

Mar 14, 2019 · CRP LEVELS @ 23.4! Should I be worried? Does anyone know about high CR in Autoimmune Diseases

@bglisson – I would find a new doctor that would listen to me and evaluate your lab work. What are you symptoms.

Mar 13, 2019 · Adjusting to life with temporal arteritis in Polymyalgia Rheumatica (PMR)

@amptrooper – I tapered off of my Prednisone in October and around Thanksgiving I started having jaw pain. I got in touch with my Neurologist thinking my GCA was back. They did the testing and my tests (Sed Rate and CRP) came back normal. They told me to see my Internist. After seeing her, I asked for a referral to an ENT because of the jaw pain. The ENT decided I had TMJ and told me not to chew on the side that hurt. My pain is now discomfort that I can live with but I read online to use ice and heat and message in front of the ear. You might want to see an ENT for the jaw pain. The ENT said they could refer me to a Maxillofacial surgeon. I said I did not want surgery but they said the doctor does more than surgery and would just diagnosis and help with the pain. Mine is getting a little better with the ice packs and heat and massage in front of the ear. Mine is just on the right side. I also went to my eye doctor because of pain in right eye. She said everything looked fine. I don’t know if you have seen an ENT.

Mar 13, 2019 · Adjusting to life with temporal arteritis in Polymyalgia Rheumatica (PMR)

@amptrooper – I understand what you are going through. I kept going to doctors in Orlando and no one knew what was wrong with me. Finally my husband took me to the emergency room at Mayo Clinic in Jacksonville, FL. They diagnosed me in 1 and 1/2 hours and the biopsy was scheduled the next day. Do not give up. Remember that this can cause blindness. Have you had the Sed Rate and CRP. My Sed Rate was only 38 and they believed that I had a really bad problem. Do you have a really bad headache. It is interesting that you had an ultrasound. The Neurologist that was taking care of me said that an Ultrasound would not show anything. Where do you live?

Mar 10, 2019 · So many questions. Seeing Rheumatology and GI at Mayo JAX in Autoimmune Diseases

@sadie168 – I think the best way is for you to call me or I can call you. It is too much information to to type.