Hi from Norway!

[From Bergen]

Hi everyone :biggrin1:

I'm glad I found this forum!

I'm a 38 year old woman from Norway, situated in Bergen - the next biggest town in Norway. I am married and have 3 children.

I was diagnosed with Wegener's in june 2012, after being sick for half a year with extreme nose and ear problems. I guess I in a way was lucky that the disease was so agressive in this area, because I understood very quick that something was wrong.

Because of the ear-problems (they were afraid that they should be damaged) I was treated with Sendoxan (7 cures, 3,5 months) and high doses with Cortisone. In late autumn 2012 I finished those cures, and has since then been treated with Methotrexate and low doses of cortisone.

This is all quite new to me, and I've had some problems in finding peace again.. It feels like a bit lonely diagnose to have, there are 400 people in Norway having Wegener's..

I guess the Wegener's is under control now, but I have some worries due to my medication..

I've read your very good summary from the Symposium Rebekah!
Can I ask if they spoke anything about increased cancer-risk with this disease/those mediscines? Or maybe some of you know anything about this? I've found a study done in Sweden about this, but this was not Wegener's pasients, it was pasients with Lupus and RA.

Is there maybe anyone in here that has some experience with long-term-use with Methotrexate?

I have one more question; do you know if it's okay to use pain/fever-killing medicines when using Methotrexate? I generally use very little of it, just wondering if I should need it for a day or two..

I hope though that time will work for me, one year is - after all - not that much..

I send you all my best thoughts!!:thumbsup:

[mishb]

Hi Bergen and welcome to the most knowledgeable WG forum around.

My symptoms are basically the same as yours and then throw RA and Lupus (so they say) on top.

I was diagnosed in August 2010 and have been on 20mg methotrexate since April 2011 as well as prednisolone (now at 3mg) and plaquenil (200mg)
I have been told that I will not come off methotrexate and will on it for maintenance purposes......the same with pred.

You can take pain killers whilst on MTX but not ones with an anti inflammatory in them like ibuprofen types.......only a paracetamol.

400 people in Norway with WG - that's crazy. Have these numbers been published somewhere?
Norway is so tiny compared to Australia and I just googled it - you have 4.5 million people and we, in Australia, have 23 million and are still trying to figure out how many people have WG.

Read as many posts as you can on here, put methotrexate, MTX, cancer or any other word in the search engine and find posts that way as well.

Take care

[Alysia]

Hi,
I will leave the answers to the more experienced here.
I only want to welcome you the forum. It is the best place to be in if you are having WG.
I wonder if there are more weggies in the more "cold" countries....

[annekat]

Welcome to the forum! You should feel a lot less alone now that you are here. I don't know what I would have done without it in the 2.5 years or so since I was diagnosed. I started reading it a little before that, so I was more ready once I knew I had WG. I have now met two Weggies in person. I hope you can connect with someone in your area who has it, but if not, you will have plenty of people to talk to here.

My symptoms were a lot like yours, with the addition of lung involvement and some joint pain. Everyone's case is a little different, but there are usually similarities. I was on Cytoxan because of the lung involvement, but am now on methotrexate. I'm sure Michelle is right about which pain killers to avoid; however, I have taken some of the anti-inflammatory ones occasionally without incident. Better, though, to follow medical advice and known precautions. I know the brand names are different in different parts of the world, but I believe that Tylenol, or acetaminophen, is the one here in the US that is not considered to be an anti-inflammatory.

I'm glad you are doing well, and keep sharing your experiences and questions here.

[Wegetarian]

Oh cool, a viking! Welcome FB!



You can take pain killers whilst on MTX but not ones with an anti inflammatory in them like ibuprofen types.......only a paracetamol.


Really? This was news to me. Ibuprofen has always been my weapon of choice for pain. They prescribed me a hundred tabs when I got out of the hospital, but that was before I had any meds besides cortinsone. Just took one ibuprofen this morning and will start MTX today. Oh well.. Very small doses anyway but I'll certainly check with my doc as paracetamol does nothing to me (and I've heard its not great for the liver anyway)

[drz]

Sweden published a study which was similar in incidence of Wegs and I suspect Wegs doesn't stop at the long border. Now we know two of your 400 weggies.

[mishb]

They say that you can't take anti inflammatory pain killers whilst you are taking pred, because this is already an anti inflammatory.
- it doesn't have anything to do with the MTX or RTX, cyclo etc

[whatthewhat]

Welcome, FB! All I will add is that when our daughter began Mtx I was relieved to find out that a family friend of ours has been on the drug (for RA) for over 20 years with no ill effects.

[annekat]

Welcome, FB! All I will add is that when our daughter began Mtx I was relieved to find out that a family friend of ours has been on the drug (for RA) for over 20 years with no ill effects. My neighbor was on MTX 12-15 years for RA, with no problems, but then negative liver stuff started showing up in his blood tests, so he has stopped and is now on something else, I don't know what. So, yes, people can go for a long time on it as long as they get the tests periodically.