GCA questions

[Plains]

I know I must be starting to sound like a nut job. I have asked many questions about some of the same things.

Here is where I have been with the possibility of GCA. The complete story. 

I was on 3 1/2 Mg of prednisone from 7/5-715. Around 7/12 I started to have some head pain.  I had no body aches anywhere else. I had slight pain, more like pressure feeling around my right ear and temple area. It did not get any worse but on the 7/16 I called the doctor and he said it could be GCA and told me to start on 50 mg of prednisone.

He told me to take  20 am and 20 pm. On the 18th I experienced more pressure and pain and went up to 50 mg. The next day I went to 60 for two days since I could not reach the doctor and was worried about GCA. I finally got a call back from him telling him of my scalp soreness ( slight) and right temple soreness. 

 On 7/21 He told me to go back to 40 mg a day. 20 am, 20 pm. On 7/25 I left him a message that I feel very dizzy at times. He told me to just take 20 mg in the morning and not to take the pm 20 mg dose to see if it goes away and to call him. It didn’t go away so he said to go back to 40 mg a day split dose. 

On 7/29, I noticed my vision seemed a little blurry. Called him several times, no response. He was out of the office and no one was covering for him. He had given me his cell and that is how I tried to reach him directly. I was very scared. I finally had to call my GP who instructed me to go to the emergency room. I went, explained the situation along with some history.

They did a CAT scan, which was fine. While in the emergency room my doctor called me. I told him what was going on and he said it was good that I went to the ER. He said he was available if they wanted to speak to him. The decision was made to give me an IV drip of 500 mg of prednisone. My doctor did speak to the ER doctor. 

On 7/30 my doctor told me to take 60 mg a day, 30 am 30 pm. On 8/1 he reduced me to 50 mg a day, 30am, 20 pm.

On 8/2 he had me take 20 am, 20pm. In 8/4 he told me to take 30 mg a day, am only for two days.

On 8/6 reduce to 25 mg am.  He told me to go to 20 mg am only from 8/7 -8/15. On 8/26 go to 15 mg, am only for 14 days.

 Today 9/2, I started having some head pressure, very slight pain on the right side, again near my ear and right temple. I don’t see him until Tuesday 9/6 and I don’t know if I should just increase the prednisone or ride it out. As I said it is more like pressure than pain, just does not fell right and not going away. 

One other odd thing. When I am outside, even on a cool day doing a little yard work, my face gets very red and my head sweets. So much it runs down my cheeks. In the past I have never really sweated much , even working on a hot day. Is this a symptom that was ever reported with PMR or GCA. I could not find any information on it. 

Sorry this is so long but I really don’t know what to think or do at this point. It’s been an up and down with prednisone. I was so excited that I was at 3 1/2 mg in July with no real body aches. My blurry vision did go away and I suspect it was due to very dry eyes. I know I could still have GCA without eye involvement. Much better with eye drops a few times a day and my glasses adjusted. They are trifocals.

Thank you as always for your help!

[DorsetLady PMRGCAuk volunteer]

Hi

No wonder you feel confused and your body doesn’t know what’s hit it, your dose has gone up and down more times than a fiddler’s elbow…. Made me dizzy reading it!

Certainly sounds as if at the moment you need more than 15mg, probably near 25mg and take it all in one dose, not split….

…and finally find a specialist who knows how to treat GCA ….in my opinion the one you’ve got now is making the whole situation worse.

.

[Plains in reply to DorsetLady]

Thank you. I agree but finding another doctor is not easy. I am going to look, even if it takes me months to get an appointment. I have been to a neurologist, endocrinologist and a vascular surgeon who told me they could not do a biopsy since I was on prednisone and it would not show anything. Told me to work with my Rhumy. Neurologist did not see any issues with a MRI that my GP ordered.

Based upon what my symptoms are, do you think I most likely have GCA?

Thank you again, much appreciated!

[DorsetLady PMRGCAuk volunteer in reply to Plains]

To be honest, it’s difficult to tell, some of the issues sound very GCA like, but with so much chopping and changing of doses and the inevitable effect that is having on your body it’s very confusing.

Plus with so many different specialists all having an input not sure that’s helpful even if it does seems normal practice in certain circles.

Think you need to stabilise as suggested by Nextoneplease and then get reviewed.

[Nextoneplease]

Hi Plains 😊

You certainly don’t sound like a nut job - in fact i think you’re doing very well to cope as well as you are with these constant changes of dose!

I agree with DorsetLady - around 25mg sounds right for now, and let your body stabilise for at least a few weeks at that dose. Meanwhile, if possible, look for a new rheumatologist who doesn’t keep chopping and changing the plan….

Re the red face and sweating, I found those were definite features of taking relatively high doses of pred (although I never got above 40mg). Hopefully you’ll find an improvement as you stabilise and then in time, reduce the dose 🤞

Do keep in touch 😊Sending you all the best xx

[Plains in reply to Nextoneplease]

Thank you so much for your response. Very much appreciated!

[Rockborne1920]

Hi, I have GCA and started on 40mg of prednisolone a year ago. I have reduced as per Dr.’s orders and am now down to 4mg. So far so good! I am stuck on 4mg awaiting call from Dr. who said she would call me back, that was 3 weeks ago and I am still waiting. However, the reason I have replied to you is about “sweating” . I sweat like a tap has been turned on!! with the slightest exertion, I have sweat running down my face, my clothes are soaking and so is my hair., so you are not alone! I also take the steroid in one dose early in the morning with my breakfast. When I started taking it, it was after lunch and I had terrible panic attacks and dizzy spells but the Dr. told me to take it with breakfast then the steroid has all day to be absorbed by your body. Since doing that I have had no trouble at all. Hope you get your dosage sorted out.

[Plains in reply to Rockborne1920]

Thank you so much for your response. I thought it was most likely the steroids causing the sweating. I upped my prednisone just a little yesterday and the pains in my head went away so I know it must be inflammation. Today I am back down to my regular dose.

[PMRpro Ambassador]

I think the thing you need above all is a sensible doctor!!! And DL and NOP have said everything I would. Like DL, I felt dizzy just reading what they have been doing with you.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Absolute bonkers!

[Plains in reply to PMRpro]

I totally agree and believe me he is going to hear it on Tuesday!!!