Hello from Europe 2 :)

[Wegetarian]

I don't know of any for Wegs in USA but think it is a great idea.

It sure is. I mean I've frowned a bit upon this courses in the past. They must be silly-expensive to organise. I mean the thought was that my sick leave would be over so the health care system would pay me for the two weeks spent here and in addition give some kind of payments for the trip. Obviously two weeks room and board and the lectures and exercise classes that are tailored to our needs can't be cheap either. I do wonder how long these will be held as the government tries to save money everywhere it can...

For me this is great though. I was in such a bad physical condition when I arrived, but the daily excercises are great. Its also so nice that its very easy to do something extra. Like on the first day I went to the spa after classes for a swim and yesterday I borrowed the bike to ride into town. Haven't been feeling too good though, otherwise I'd had gone to the spa yesterday evening too. The gym is small but nice, I think I'll use it more next week. I booked a couple of sessions with a swim instructor who helps me improve my swimming techniques, so I have my second session tomorrow and would love to go practice today but I'll most probably skip it again since I have a nasty cough and don't want it to get any worse.

[Wegetarian]

Just had a chat with my doc. My ANCA levels had gone down to 6 (were 25 at the beginning). My chest X-ray was fine, already heard last week that the eye MRI was also good. All other levels were fine too, so most likely I won't need to have blood tests every two weeks anymore. She said that as I'm still on high doses of cortisone I should take the 1000mg of calcium and the biphosphonates. Dunno, might ask around what the consensus is over here.

Lecture by the Authorized nutritionist

The lecture was for all the attendants, not just for us vasculites. I guess everyone there had some sort of rheumatic condition but he knows there were also a group of vasculites attending.

We shouldn't eat too much calcium. It put us at risk for heart and blood vessel diseases (and death). The calcium we get from food isn't going to cause this, but taking too much in supplements could put us at risk. (The exact numbers weren't in the papers, but if I remember correctly over 1400mg would be bad, and even with lower amounts it might not be used for our bones if we don't take enough D-vitamin in which case it ends up in our blood stream)

He also said Rheumy infections increase our risks for heart issues (tough to translate the details)

He mentioned that we who suffer from an auto-immunity disease are 5x more likely to get another auto-immunity disease than a healthy person.

He was very keen on recommending us to take Omega 3 fatty acids. He also recommended nuts as they contain a lot of good fats, like walnuts.

He warmly recommended us to choose full grain products over white wheat, and that the fiber also helps in keeping our cholesterol levels down.

After reading the papers I felt a bit disappointed that a lot of the material presented wasn't in the hand outs. They mainly discussed the fatty acids.

[Wegetarian]

Had a couple of lectures today too. One was general information about vasculitis by a rheumy, it was quite interesting but I have to see how much there is to write about it as I doubt its useful that I write about other vasculites and some of the stuff is difficult to translate. The other lecture was about painkillers and cortisone by a nurse, but it was aimed at rheumy patients in general so not too much info for us - and a lot of the information was regarding different medicines and I suppose they have different brands in other countries so again not much point in me writing about them.

The nurse did say that according to the newest information it would be best to take cortisone between 02-06 at night as it would cause less issues for our sleep cycle and I guess mimic the body's natural production better. Dunno, I can't imagine taking it at that time since I want to take my stomach med the first thing in the morning and I really don't want to wonder in the morning did I take the pred while I was half asleep or not... She also said there is a new cortisone called Lodotra which is slow release, so you take it at 10pm and its released into the body at 2am. She said its an interesting alternative for people who are really stiff in the mornings before taking their cortisone. I guess its not widely used here, and there isn't long term data available but could be an interesting drug for some. She also said cortisone has a big difference in making it easier for us to get infections, and she had seen some studies about it (unfortunately I have no more info about them) and reminded us of good hand hygiene as it could help prevent infections.

[Alysia]

The nurse did say that according to the newest information it would be best to take cortisone between 02-06 at night as it would cause less issues for our sleep cycle and I guess mimic the body's natural production better.

thanks for the generous sharing of all the info
taking pred in the middle of the night to help sleeping better sound strange to me (maybe I didn't understanad it ?) I am taking my pred first thing in the morning, with some food.

[Wegetarian]

I think she meant that you'd be able to sleep better next night, i.e it wouldn't disrupt your patterns. But I certainly agree that it would be incredibly inconvenient to wake up to get pred at say 4 am.

[Wegetarian]

My toenail turned white about a month ago, the doc suggested I should go to the lab to get a sample taken. I also asked if we could check my D-vitamin levels since the nutritionist thought it would be important, and asked if they could check the liver values so I'll get those too. Better safe than sorry Actually I'm kind of surprised they haven't checked the D-levels since based on what I heard it could be fairly dangerous to take lots of calcium if those are way too low.

I also took the flu shot. Have fairly mixed feelings about that, but since all my docs have recommended it so figured I'd take it this year. They would also give me the PNP pneumonia shot, but for some reason my doc didn't recommend me that. I know a lot of local Wegs have been recommended to take it even if it costs like 80 euros if they need to pay for it (I can get it for free from our company doc). Guess I'll ask my doc again when I talk with her. Not too keen on taking vaccines, but I understand the pneumonia can be pretty rough for us.

[SpaceflightAddict]

My toenail turned white about a month ago, the doc suggested I should go to the lab to get a sample taken. I also asked if we could check my D-vitamin levels since the nutritionist thought it would be important, and asked if they could check the liver values so I'll get those too. Better safe than sorry Actually I'm kind of surprised they haven't checked the D-levels since based on what I heard it could be fairly dangerous to take lots of calcium if those are way too low.

I also took the flu shot. Have fairly mixed feelings about that, but since all my docs have recommended it so figured I'd take it this year. They would also give me the PNP pneumonia shot, but for some reason my doc didn't recommend me that. I know a lot of local Wegs have been recommended to take it even if it costs like 80 euros if they need to pay for it (I can get it for free from our company doc). Guess I'll ask my doc again when I talk with her. Not too keen on taking vaccines, but I understand the pneumonia can be pretty rough for us.

My vitamin D levels were extremely low when I was first diagnosed, but my doctors still suggested I take a calcium supplement with D3 in it, as well as a weekly 50,000 IU pill of D2. My D 25-Hydroxy level was at 2.3 ng/mL when I was hospitalized, and has risen to 29.3 ng/mL as of two weeks ago.

My wegs doc highly recommended the flu shot and pneumococcal vaccine, but said to make very sure that it was the dead virus form of the vaccine. I had both of those two months ago, and I have had no ill effects from them.

Hope everything is going well for you!
-SpaceflightAddict

[Alysia]

Hi Wedgi,
welcome back from the spa
checking liver functions should be on a regular basis. it is included in my blood tests every month.
what's wrong with your toenail ? only one ?
now that you had the flu shot you can tell us how it is, and I hope you will have nothing to tell.

[Wegetarian]

Thanks, I feel real good. Best I've felt in three months I guess I miss going to work though, hopefully I can return next month as planned.

I take 20uG which is included in the calcium supplements, and in addition I've taken 25uG (not prescribed but figured the amount I had was real low). I have to check how much its in IU, I think its 40x so it would be 1800IU in total but could double check from the pill box. I live in a very dark and northern country though, so the requirements for us should be higher than for people who see the sun.

Thanks Alysia Was nearly planning an escape from the spa during the weekend, but all in all it was a nice trip and I got a ton of exercise which I really needed. Didn't get as much new info as I had expected, but I think thats in a large part due to me reading everything I could find so there wasn't that much new to offer.Yeah, its only one toe and I don't have any symptoms except it turning white... So haven't been worried but still figured its good to check WTF is happening...

[pberggren1]

Sounds like the flu shot is eating away at you Wegetarian. I can certainly understand that. Back in 2004 I got it as well. I let my doc talk me into it. She was very adamant that I get it. I had an immediate reaction of a rash that went away in a few days and I also fainted and threw up because I was very cold and weak right away. Then I had to get the flu shot in 2011 with my cochlear implant surgery along with Menactra and Pnuemmococcal 23. I had immediate reactions to those. My mouth has been very dry ever since.