Update on Life, tooth infection, antibiotics and tapering.

[catdance]

Hi All! Sorry it's been a while. Life has been kind of crazy. I haven't been on here much due to working out some grief issues amongst a few things.

My youngest son and his young family having gotten Covid. So more stress, worrying about the littles but they are all well and healthy so, glad that's over. I missed having my 3 yr old grandson and seeing my 6 month old grand-daughter so much. Even though it was only about a month, they grow too fast!

I ended up taking more antibiotics so a total of 4 rounds, 1st one was too low to handle the infection/abscess. So, 3 rounds of the stronger dose and so far, knock on wood, the infection has not come back. I suspect I will eventually have to have the surgery but for now I'm good.

The tapering is going ok although I still feel that I'm going too fast. Kind of achy but still manage to get out for a walk nearly every day, weather permitting. Might have something to do with my back but more about that later. Oh! I've lost 10 pounds. Of course I still fluctuate a pound or two but I figure that it's still a step in the right direction.

I just saw my rheumy last week Tuesday. She told me she wanted me to continue the slow taper but would like me to be at 5mg by the next time I see her, in 4 months. 🤔 Not sure if that will work. I'm just going to do the best I can and see where I'm at then. She keeps saying I'm at a pretty high dose but when I looked it up a high dose is considered 40 mg and up. I'm at 8 1/2 mg so that's considered moderate nearly low. I also thought I was supposed to get to 7 1/2 mg and stay there for a while but since I've taken so long to get there she probably thinks I should just keep going. I think that her goal of reaching 5 mg in 4 months is a bit of a stretch. I might be there in 5 or 6 months if it all goes well but not much she can do if things don't work out as quickly as she'd like.

I also saw my bone specialist. She didn't do a bone density test this time, just a blood test and said my bones are stable. If it showed I was too low then she would do the bone density. So I'm good to go til next year.

With that said, about 2 weeks ago, I walked into my dark bedroom, as I had done many times before. This time I bashed my knee into the bedframe. Luckily I missed my knee cap. At first I saw stars but after a few minutes, I was fine, or so I thought. I had some friends over and I was good up until they left and I went to bed and put my leg up. Thinking raising it would probably be a good thing. As I went out to the kitchen to take my dose of pred, I could barely walk! Any weight on it caused excruciating pain and it did swell up quite noticeably. I was very close to calling my son, who lives about 2 miles away, and have him take me to the ER. I didn't. The next day I expected that I should go get it looked at but to my amazement, I was no longer in pain and all seemed fine. Just a slight amount of swelling, much less than the night before. I got lucky! Maybe a bit stiff but really not as bad as I thought it would be.

Well to top it off, this last Saturday, I went out to my garage and promptly missed the bottom step & half step. My leg gave out from under me, opposite from the knee I just hit, and I landed smack on the flat of my back! I thought, "Oh boy! Just what I need now is to break something!" I mentally did a body check and didn't feel any pain or numbness so I got up very slowly continuing to check for pain or anything that would indicate I should stay put. Nothing. I proceeded to go back into the house, nothing. I didn't even get the wind knocked out of me too much. I found out the next day that I hit my elbow but other than that I was a bit stiff and sore. All things considering, guess my bones are stable! I must have a guardian angel watching over me.

Thank you to those of you who read this all the way through. As I re-read for mistakes, I was kind of giggling, thinking, "What a cluts!"

[HeronNS]

As 8.5 is only a shade above the amount of cortisol we naturally produce your dose is hardly "high"! If you are achy can you slow the taper a little bit? Stay a bit longer on current dose to make sure you aren't going to start feeling worse? The last thing you want to do is cause a flare which will mean you end up taking more pred. Remember: "It isn't slow if it works". It is nice to get to 5, but as you so rightly say, you can only do your best, - and doing your best includes avoiding a flare.

Please don't test your bones any more! I wasn't thinking you were a klutz, I was holding my breath and hoping you hadn't caused any serious injuries!

(P.S. You might want to check your final paragraph - were you interrupted when editing?)

[catdance in reply to HeronNS]

Thank you for your response and support. I totally agree with you. As I said there's not much she can do if I have to take it slower than "the goal" of 5mg in 4months. My goal is to taper at the pace my body is ready for. She has to consider that there has been a lot of stressful events in the recent past, and the inflammation the tooth infection was causing likely used up a good portion of the dose of steroids for quite some time, so it makes more sense to stay where I am at for a bit longer.

I promise to try not to test my bones again but it always seems to happen that the only time I have a fall is right after I see my rheumy. Lol! I guess I forgot to mention that I fell on a fatigue mat, like what they have in a restaurant so, was not as bad as if I fell directly on the cement floor. Still that says something about the fact that my bones are good & sturdy so no need to rush the taper at this point.

As far as the last paragraph, I was typing it up and it disappeared. I tried to undo whatever I did but it didn't come back. It really must have gone to the bottom. From now on I'll double check that may be where it went, if it happens again. 🙄Thanks for the heads up!

[DorsetLady PMRGCAuk volunteer]

Hi

Bit concerned about the ‘kind of achy’ so maybe a bit slower on the tapering [despite what Rheumy thinks, as for 8.5mg being high, bonkers!] and also the number of falls you seem to be having. Is that because you aren’t concentrating on what you are doing due to thinking about something else, don’t have adequate lighting or are you unsteady on your feet generally.

Because I have mono sight due GCA I’m always very careful about steps or any change in ground/floor coverings, inanimate objects etc …just takes a bit more concentration.

[PMRpro Ambassador]

I don't think that 8.5mg is particularly high after less than 3 years (is that right?) and Covid and enthusiastic tapering induced flares. Your rheumy needs to come into the real world because she is going the right way to induce another flare and higher dose.

Like DL, I find uneven ground and steps difficult - even with good sight - and even ruling out the last paragrah as duplication, you maybe need to revise the measures for avoiding falls!!! Top of the list is GOOD LIGHTING!!

[DorsetLady PMRGCAuk volunteer]

Re PMRpro's comments on Good Lighting [totally agree by the way] - cats may have very good sight in the dark, but we humans don't necessarily, despite our avatars.. and you do seem to be testing your nine lives at the moment.😼🐈‍⬛

[catdance]

PMRPro: Yes it's been just under 3 years. Thanks all for the concern on lighting & falling. Walking into the dark bedroom, my choice, thinking my "feelers" were good was perhaps a bit overconfident, didn't take it slow enough for my eyes to adjust but I didn't fall. As far as the garage, lighting is great, I just was in a hurry and missed the bottom step, which I wouldn't have fell but there's another shorter step, that runs the length of the garage and is only 3 1/2 inches tall and.....I guess, it's kind of a hazard but......if I quit thinking I'm still 20, I'd slow down. Just stupidity on my part. It's been that way for 5 yrs. so I should know better. I probably should hire someone to put a railing on it or rebuild it so it makes the short step a part of it. I think it was supposed to be temporary but since my husband died, there's a lot of unfinished projects I've been left with that I don't really know what the plan was. Other than that I haven't taken a fall in more than 2 years. I think the last one was in a parking lot where the heel of my boot got stuck in a crack and nearly pulled my boot off. Didn't see the crack because it was covered with snow. I really didn't think I was falling a lot, unless I forgot some, 2 in 3 years?

[powerwalk]

Oooh I had butterflies reading about that fall!!! Thank goodness you didn't break anything!! Well done your bones. I can relate to the antibiotics, on fourth lot trying to get rid of kidney infection. The bain of my life! Take care.