Oh happy days! Talked with the doc this morning, I'm immediately allowed to cut down my pred from 60->40mg. Last I visited her in mid-august we discussed that we'd do that after a month - so I asked her about it and it turned out I could have done it at the start of Sept (I started taking pred at the hospital at the end of July). Just turns out no-one told me to cut down the pred . Oh well, glad I asked... My blood was fine, those white cells were down which I understood was a good thing, they weren't down so much that I'd get sick easier but were just lowered to a better level.
I talked with another Weg patient at another support group and she was recommended to take a flu shot (we get it for free since we are at risk) and a shot called Prevenar against pneumonia (note its not against PCP pneumonia). Prevnar should be quite expensive though, 80 euro or something but guess I'll take it if its recommended. My doc said she'd get back to me about those as she'd check with the infectious diseases doc (or whatever its called in English).
Turns out I could go swimming, but once I'm in a better physical shape as I'm still quite weak. That's excellent news, since I wasn't sure how long I'd be forbidden to do any fun stuff. Especially if I get to go to the spa for two weeks next month it would be a bit annoying to not go near the pool. But more about that later, should hear about it in a few days.
The doc also asked if I've heard anything from the shrink, and when I said no she must have done something about it because they called me today. So I have an appointment in a week and a half. I'm feeling much better mentally though, still get agitated easier but I doubt anyone else than my spouse notices since I'm quite easy going anyway. Maybe cutting down the pred will help with that too, at least the mood swings and hyperactive feeling got a lot better last time I cut down the dosage from 80mg. I haven't been sleeping well, usually wake up about three hours after I've gone to bed and then stay awake for a few hours (and eat a big snack). So hopefully somehting might be done about that too. Although I don't really want to take any sleeping pills. I've been taking those melatonin pills earlier, but there were some discussion about that they might not be suitable for rheumies. My doc told me it should be fine to take them as they haven't any side effects listed with the meds I'm taking now. Dunno, guess I'll take them when needed since a good nights sleep is just so important when tired.
Lastly I got a call from my company's insurance company. They had been sceptical about my bills since there were some problems with my papers, i.e. they weren't sent in time or someting. Turns out they were cool and said they will pay the invoices I sent them (about 300-500 euro's in hospital and med charges depending on what they cover) and they also told me that they'd prefer if I'd switch my treatments to our private doctor and they would cover the expenses and meds. I almost fell of my chair - I was completely expecting them to just deny everything and then me having to try to get their decissions overturned and the last thing I'd need right now is an argument with an insurance company since I've been told to avoid stress. Just was so surprised how super nice she was. I mean she told me that if I don't switch treatments to the private clinic, then I should re-new the prescriptions there so I'd get the money through them - and if my doctor absolutely refuses to have me switched over to the private clinic they could likely do an exception for me and cover the meds even though it wasn't prescribed by a doc appointed to me. Lastly they said it should be possible to get a doctor outside our clinic to treat me, if there isn't any suitable doc available - but in that case I need to contact them to work it out beforehand. Amazing... Really didn't expect that kind of service. Already asked around if they know any good doctors specializing in Vasculites and I'll try to get a time for our company doc to see what he thinks and suggests, although I'd rather have the names of a few great docs in advance in case I can pick I really doubt the public hospital would mind if I switched, the staff seem so overworked there.
Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)
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