Rock and hard place

Speaking for myself, I'd do just about anything to avoid going near a health care facility right now.

I hear you! In fact, I just had a "virtual office visit" with my GP. It worked well! It was like a video meeting on skype, but they used "Microsoft Teams." I had to set it up ahead of time and download the software, but like I said, it worked. The doc said it was his first time using it, too. I basically filled him in on what's been happening and got a refill on prednisone (along with my other meds). Of course, I had to make my co-pay, which made it like a real office visit! :^/

Karen, thanks for yours and all replies! I had adhered to the directions of a rheumatologist in my taper. It had worked well until I got down to a couple mg, when the symptoms started "peeking over the edge," so to speak. As suggested, I'm going to have to bite the bullet with respect to Covid19, since these emerging Giant Cell symptoms are here now, and that can be pretty dangerous! So back to the prednisone. I've been staying inside, regardless.

Boone, learn to listen to our body, you know your condition better than your Rheumey. 🙂

I started at 7.5 mgs.2 5 years ago & it took 18 months to taper down to 5mgs.which I have been on for a long time. At 5mgs my immune system is terrible compromised. In Oct. I got the flu & it was the scariest flu of my life since I came close to dying of pneumonia. Shortly after in the 1st week of January(before Covid19 got to the U.S.) I got another flu & once again got pneumonia which I have never had in my life, just bronchitis. This past August I got a horrible illness that lasted 33 day & it was giving my horrific electrical shock pains going about 6" into several nerves in my chest, back,& then up into my head & the shocks were many times every 5 seconds & my fiance could feel the muscles jolting from the shocks. The emergency room doctor had heard of others with identical symptoms but they don't know what it is. Anyway my rheumatologist said you are loosing your immune system from the 5mgs.of Prednisone & he told me to go down slowly on my dose. I was at 4.75mgs & 4.5 but I got symptoms of GCA really bad & after 2 or 3 months of that I had to go back to 5mgs.. My point it that even at a long term,low dose of 5mgs. it still has a profound affect on my immune system.

I'm just wondering, from your symptoms, if you perhaps actually had Covid and recovered- despite pred. Have you actually been tested for that? Also did you ever get the 2 pneumonia vaccines that protect from most bacterial pneumonias (as well as sepsis& meningitis)? In the US they are recommended for over age 60 or younger with pulmonary issues). The names and Pneumovax and Prevnar- given a year apart.

I was at 4.75mgs & 4.5 but I got symptoms of GCA really bad & after 2 or 3 months of that I had to go back to 5mgs.

Sorry to hear you're having such a hard time. My GCA symptoms were fairly mild, not severe, not all that persistent, but definitely some occasional feeling of pressure in the temples. 5mg prednisone didn't quite alleviate it, so I went up to 7.5mg, which almost did the trick....

I finally got in to see a new GP earlier this week. He was surprised that neither my prior GP nor rheumatologist had suggested to stop taking atorvastatin for two weeks, then to come in for a blood test to check the inflammation markers and the cholesterol numbers. If the cholesterol is high, he'll put me on (generic) Crestor, not atorvastatin. He said to stay on 7.5mg for now. GCA symptoms pretty well gone. I'm feeling pretty good so far....

I had the 1st flu in late Oct. & the 2nd started in the 1 st week of January when I was still getting over the 1st flu. We had no Covid 19 in the U.S. the 1st week in Jan. but they think it may have been here in Feb. now. Thanks for reminding me about the pneumonia vaccines. I got the 1st one about 3 years ago & nothing after that so I will have to talk to my primary about that. Thank you ! I wonder if I have to start all over with the 1st shot & get the 2nd shot a year later ???

I forgot to add that I did get tested for Covid 19 & it was negative .

There is evidence that Covid-19 was already present in the USA much sooner than thought

https://www.latimes.com/california/story/2020-04-11/bay-area-coronavirus-deaths-signs-of-earlier-spread-california

It isn't an impossible suggestion.

For live virus or antibodies?

Yes, Two cases they went back to check for February of 2 people that died. Mine was the 1st week in January. I have terrible lungs from living & working with chain smokers who did major damage to my lungs for the 1st 39 years of my life. I never smoked myself but think I am getting COPD since I can't breath in deeply without coughing & I have chronic wheezing deep in my lungs now so had I gotten the Corona virus with my bad lungs & very bad immune system with 5 auto immune diseases I would not have survived it I think.

Thanks for the link though !

EileenH, I think Washington state has a fairly good idea of what happened as far as what happened there, but the rest of the country has NO clue. Some states are working diligently other state just want to get things open and get back to business.

The UK hasn't a clue either - and suddenly today they have said that the way out is tracking and testing, testing, testing ... And there was no requirement to put Covid-19 as a cause of death on the death certificate. They have no idea - but there is criticism of China - who had no real warning...

Well, so far we have managed to make it through this and that is a lot to be thankful for! Politicians, who do not believe in science have done almost done us in!

I was negative for the live virus & it was negative. I got tested because I have been sick for 2 weeks.

There have been problems with earlier testing giving false negative results.

They are two different shots, the second doesn't rely on the first. Each protects against a range of different pneumonia bugs. The second one is usually given to people at more risk and it certainly sounds like you qualify.