Hi all! Some actual changes to report! It’s been a busy week for a few different things. For starters on Tuesday I had my normal hospital appointment and IGG infusion. While getting ready to leave I aggravated my right hip again slightly, nothing to bad but irritating. The appointment all went mostly ok, was longer than normal as I had to wait to see the doctor first and then get the infusion rather than getting the infusion while waiting to see the doctor, which I don’t mind really.
With the aches in the legs getting worse the doctor wanted to reduce the steroids by 1mg from 10mg, which doesn’t sound much but when you’ve been on them for so long at a stable dose it’s a big thing. I’ve been on them for 25+ years and only managed to get off them for a couple of weeks that whole time and that was at the end of 2019. The outcome of coming off them then was ending up with pericarditis which wasn’t pleasant.
I told her about the problems I’ve had trying to come off them since but I forgot about how it affected the heart the last few times and it’s not until today that I’ve realised why we stopped trying to get bellow the 10mg since the pericarditis. I had said about the general side effects like fatigue and general withdrawal symptoms, but I’ll get on to the other issues a bit later as other factors were involved too.
I got a call from my osteoporosis doctor about my annual infusion of Alendronic Acid to help prevent the bones from getting worse and I was advised to stop my betablockers until the infusion the next day. The rest of the appointment on the Tuesday went well and got some meds that I had to pick up too which saved another trip another day. Wednesday I got to Musgrave and all that went pretty smoothly but the blood pressure was a bit low as usual and was told to stay off the betablockers until the following evening.
At this stage I was still feeling ok which was good as I’d a busy day the on Thursday but on Wednesday evening after my sister had left I came down with flu like symptoms which I generally get after the Alendronic Acid and I went to bed early, probably would have anyway with the busy next day to get extra rest and prepare myself for it.
The next morning I got up and held off on some of my tablets until later so they would kick in while I was out busying, which seemed to work well as I was able to manage a lot better than I was expecting. That evening I got home, had a bite to eat and went to bed early again as I was so shattered from the long day, although the next day I was up stupidly early as I’d slept more than I normally would and was feeling it.
On the Friday I had a pounding headache, I thought it was just because I didn’t have enough fluids, the awkward sleep pattern, the general busy previous day and with being off the betablockers and going back on them again. The whole day my head was sore and didn’t improve much at all, the only time I got a bit of relief was when I lay down. I was hoping that after another night’s sleep it might have settled and although it did on Saturday morning I still felt very off and feel like something isn’t right, initially that morning I thought it was still just all of the above.
It wasn’t until the afternoon that I remembered the feeling and it was from the last few times we tried to reduce the steroids. It’s hard to explain, it’s like the effects of a really bad hangover but not quite as sore a head. I’ve checked the blood pressure and it’s all my usual normal and heart rate too but it feels like my head is drained but neck is gushing with blood and the heart is beating stronger but not faster, the chest feels a little uncomfortable and the neck a bit sore although I think it was normally the left but this is more on the right and the face feels flush and bloated.
Again if I lie down it does seem to ease a bit, this was the same with the pericarditis when I had it and it was definitely sore on the left of my neck for that. It hasn’t been getting any worse since yesterday but if it gets worse or doesn’t improve by Monday, I’ll have to phone the hospital to see what they say, it would be good to get answers as to exactly what it is and if there is anything I can do without increasing the steroids that might help it until my body gets used to the lower dose and settles itself.
On another note, I’ve been watching a few more films again and just about to watch film 500 from the start of 2021, I have some popcorn so might make it a proper Insplex film.