Talked to the doc today. Got some good news The blood tests from yesterday were all great, so I'll continue upping the MTX today to 15mg. She also said I can quit the antibiotics this week. Was a bit surprised by it actually, at the hospital they said I might be on them for life and last I talked to the doc I thought she said we'd try to cut them off after two months (which would still be over a month in the future). I even have three boxes in my cupboard since I thought I was going to be on them for still over a month. Well anyway, its my seventh consecutive antibiotics box (counting the IV at the hospital too) so I'm thrilled to stop eating them. Being cheap I was also annoyed at the probiotics my other doc recommended to me, as they would cost about 70 euros / month if I took them according to the prescription. Was going to switch to some cheaper brand, but hopefully I won't need any next week.
Was surprised that the doctor didn't get my message about almost fainting last friday night. The nurse I talked with said she'd forward the message to her, but I guess it got lost. She was a bit worried about it but since it was an isolated incident we let it pass.
Generally I'm feeling real fine too - we cut down the pred to 60mg the last time I saw the doc and I don't get the coughs as often. I think the squeezing pain in my chest doesn't occur too often either. Today I had some, but I kind of expected it since I only got about 4 hours sleep and I always feel worse when I haven't rested enough. Luckily I had nothing scheduled for today, so could just chill for the most of the day. The kids can drive me nuts pretty quick. I think its due to the stress when they are yelling and fighting, it seems to affect me more now than before and can tire me quite quickly.
I ordered the Neilmed squeeze bottle and battery operated thingy, didn't see any available locally and it was quite cheap to order them online from England so why not... Should have them early next week I suppose. Heh, in the morning I was using my neti can and was really short on time. I knew I had something in my nose and it was a bit painful to the touch, but as in a real hurry so knew I wouldn't have time to refill. Just poured everything in one nostril, but nothing would come out even when I blew my nose. So I tried one last time to blow my nose and out it came. Hallelujah! What a feeling. Well, maybe the squeezy thingy will be more efficient. It just feels that one fill of the neti can is never enough these days.
Also, my doc said its OK to just use regular tap water. Our water should be really clean, and I'm quite relieved I won't need to be hunting for some purified water or spending over 50 euros a month on bottled water at the pharmacy. I know I'll get flak from Phil, but I'll just have to live with that If a parasite does eat my brain you can tell me that you told me so. My doc is a specialist in nose/ear/throat issues so she should know.
Decided to join this support group that meets once a month, its not for Wegs but for people with rare Rheumy cases, was told there are always a few Wegs there so might be interesting. The organizer I talked with was very friendly, and recommended me this kind of retreat for people who suffer from vasculites. It sounded extrememly interesting, theere will be rheumy docs, dietary specialists and other experts and we'll get individual plans too. The only thing is that it lasts for 12 days! Its after my sick leave so not only will I have to ask for almost two weeks of time off I'll even need to be away from my family as its too far to drive back and forth daily. Dunno... My spouse said I should apply and she'll manage. My company is really cool about everything and have been extremely surprised so I'd be shocked if they said no. The last day for applying was three weeks ago though, so that might certainly be an issue. I'll call them tomorrow and see if its still possible. I mean the doc who treats me is real great and listens to me, but Wegs isn't in any way her speciality but she does consult the specialists. So if I go there I'd get to see a bunch of experts on vasculites. The person who recommended me the course also said she learned a ton there. So it should be an extremely informative trip. If I go I guess I should write a trip report to you guys too.
Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)
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