Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)

so what happened with your diagnosis?

you sure are going through alot! I have a question for as I have alot o crazy symptoms yet to be diagnosed. One symptom Intracranial Hypertension which my neurologist thinks i might have but is scared to do a lumber puncture because it can cause alot of harm I guess. Nothing has turned up on the normal MRI and CT angiogram, so I am wondering how you got diagnosed. Basically I have been in bed for 4 months, I have right temple muscle that swollen (not tmj), if i go and try do anything like go to the store I get nauseous dizzy, and then the light and sound become strange and my body feels light sometimes, get tension headache and all head is sore to touch and lost some vision in right upper eye, my hears get plugged like on a plane. I am just asking because this seems pretty rare, and I am afraid to do anything now, any info would be appreciated and thanks

@dchandler7

Hi, I have not posted since late August of 2018, but wanted to share something that just occurred to me two days ago. I went to Northeastern WI on Sunday and the weather was a good ten degrees colder than here in Milwaukee to attend a musical production. I had not been experiencing any Temporal discomfort since April/May of last year and as we were walking to the parking lot outdoors after the production, the left side of my head (temple and behind my left eye slightly) began to hurt. It came on very gradually without any warning but not as bad as in the past...after getting back to Milwaukee later that evening I could still feel it so I thought about it and wondered if it was attributed to the cold drop in the weather and with that said, cold weather causes constriction....so, why wouldn't warmth cause the arteries to expand. I took a clean face wash cloth and ran extremely hot water over it and went to bed and placed this very warm face cloth on the left temporal and further up to my forehead and upper head. I fell asleep and in the morning when I woke up, the pain was gone, which I was very relieved. Then I decided to take two Ecedrin Migraine tablets for good measure and so far I have not had any more discomfort. Now, I am just offering this as something that I came to my own conclusion to try....no medical professional or any other person ever suggested it to me, but it did offer relief for me. I can't say this will work for everyone, but you may want to give it a try.

@charann2000 - I was surprised to see you back on this site. Have you had any vaccines recently? My neurologist at Mayo said to be very careful with vaccines. I had the flu vaccine after I got off of Prednisone and had some problems and thought my GCA was back. They took Sed Rates and a CRP and they all came back okay. Still have a little discomfort.

Hi Tinkerbell, About two months ago I had the first Shingrix Vaccination....it left my arm (left arm administered into for the vaccination) terribly sore for about two months down to my fingers feeling a bit stiff or numb. I think that perhaps the Pharmacist who administered the Shingrix did not shake the vaccine as much as needed and that is why I got sore. Aside from that, nothing of more recent than that. My senior flu shot did not affect me at all and that was in mid-September. Also, I never went on Prednisone or anything except a RX nasal spray once a day. It could be that we are getting older and even routine vaccinations hit harder. I know that when I get a cut it takes way longer to heal especially in the legs due to slower circulation in the legs associated with aging. Glad to hear that you are off of Prednisone....the less drugs in your system the better you are off in the long run.

@charann2000 - I have decided not to get the new vaccine for Shingles. I figured it would probably set off the GCA again. Glad you are doing okay. Take care of yourself.

Thanks, Tinkerbell, you also!

At my last appointment at Mayo in Rochester, I asked my rheumatologist doctor if I could have the shingles vaccine. I have both GCA and PMR. He urged me to have the shot. I also take methotrexate and prednisone. Had both shots and other than a slight headache I got along fine. FWIW. Just to help others to make a decision.

This is my first post so I apologize if I am in completely the wrong place or if my question has been answered a million times before. I searched for a Giant Cell Arteritis group and I searched each of the 14 pages in this thread for "sleep" but did not find much discussion relative to my concern. So here goes. Thanks for your patience.

In April after the second biopsy I was diagnosed with GCA. I have was on 60mg Prednisone from early April until a week ago when they dropped it to 50mg.
My biggest problem is insomnia. It may be slightly better at 50mg than it was at 60mg but I'm still really struggling to sleep.

I go to bed dead tired and fall right asleep. I then sleep one or two hours and I wake up. Usually I can go back to sleep at that point and sleep another hour maybe two before I wake up again. The third time I wake up (now about 2:30am) I get up and take a chewable melatonin. Back to bed and after a little tossing and turning I can usually zonk out for another hour. The 3:30 wake up is the worst. I may take another melatonin and try to get back to sleep but I rarely fall back to sleep at this point.

I never had any trouble sleeping before the GCA and Prednisone. I could sleep 7 or 8 hours straight and wake up feeling fine. Now 4 or 5 hours sleep in a night with only two interruptions is a good night sleep. I'm trying to finish my last three months of work before retirement and I feel like I'm just dragging myself through the day and trying not to fall asleep at my desk. I had a productive and enjoyable career and I really hate the feeling that I'm limping too the finish line.

Can anyone point me to discussions about dealing with Prednisone induced insomnia? I'm not finding much on the web about it. The only advice I have been given is "take it in the morning". Thanks.