Arrrgggg! Its got me..... or is it I got it?

Diagnosed in Feb this year.
Guess I should count myself as very lucky as it has been caught very early and compared to the experiences of many other sufferers, I have nothing to complain about. I actually feel a bit of a cheat. In reality though, I am just beginning to come to terms with WG. I am finding it hard to accept that I can’t do the things I could do just a few months ago. Still, after 3 months I can nearly pronounce it!!!

History.
I was a quite fit male of 54 years, an average runner who knocked out 30 miles a week on a regular basis. Completed marathons in under 3hours 20min and who was training to run Paris & London marathons this year (April). I was picking up the weekly mileage in September 09 and there was a slight thought in my mind that this is tough! (I thought it was just age!). In October my wife and I went on a 5 week vacation.

Second day in, (Singapore) I started to get a stuffy nose. I thought hay fever, as it was spring over there and tried the usual cures. This did not work so started hitting the cold/flu remedies to no avail. Moved through Australia, New Zealand & the States getting advice form pharmacists etc, tried a lot but still no improvement. By this time my nose was running like a tap and I felt personally responsible for global warming via the number of trees required to keep me in tissues!

My hearing in my left ear started to go and by the end of the holiday had gone completely. I also had continual headaches and general un-wellness. Whilst in NZ I had agreed to run a half marathon with a relative which I did. I was lucky that she was a lot slower than me so managed it quite well.

When I arrived back in the UK (December) I left it a week or two to see if things improved. My running was rapidly getting worse and by January I could not run a mile. Tired all the time. I now had a bloody crusty discharge from the nose. Sensitivity around the scalp which meant it was uncomfortable to wear glasses/hats and sore eyes. So off I went to the Doctors. He tried antibiotics and a variety of remedies which naturally failed to improve things.

I drive trucks for a living and work both day and night shifts. I started to struggle with the night shifts. Starting at 6pm, I would have to pull over to sleep by 8pm as I was so tired. My eyes would not focus when the bright headlights were coming towards me. Snoring got very loud and bad – sent to spare room! Went off sick! All in all quite a worrying time for me.

Anyway, my Dr referred me to ENT and was seen in early February.
Here I struck gold. Mr Resouly from Queen Alexandra’s Hospital, Portsmouth, sent me immediately for the right blood tests and hey presto, the diagnosis was there! Passed straight over to Rheumatology where, along with a couple of armfuls of steroids I was started on 20mg Pred & after a gradual increase 25mg Methotrixate. Loads of other tests but luckily all clear. Able to return to work quite quickly after initial treatment.

Was asked to start reducing the pred by 2.5ml a month in March. After the second reduction all my symptoms were returning so have returned to the 20mg dose again. (after advice.) Should my current medication remove all symptoms to enable a potential drug free remission?

Currently symptoms have receded again but not all gone. Again is the advice to contact Rheumatology to see if I need to increase the pred/change medication?

I’m a bit of a workaholic and am always on the go. Find I can work quite hard for half a day but always feel rough the next day. Also been trying to get my running going again as weight gain is a problem.

From the other threads on the forum I see that I am going about things the wrong way and should be reducing exercise. Trouble is running is important to me (weight, stress reliever, social,) that I am very reluctant to give it up. I’m a lot slower now and only going up to 3 miles maybe twice a week. Am I really harming my chances of a speedy remission? Should I be looking longer term and stopping it for a while?

I know this sounds a minor issue in comparison to how other WG people are suffering and I do hesitate before asking.

Your site has indeed given a lot of answers to questions that I have and I thank you for this. Other sites have managed to scare me quite considerably but yours is by far the most friendly and straight talking I have found. A fountain of great knowledge and advice .
thanks.

Welcome Hammy, I love this forum too. I feel your pain....I was a track and cross country star when I was young. I noticed too that my ears and sinuses get worse when I exercise and I am just walking. So I am walking less, and slower. I exercise too for the stress relief and endorphins ( makes me feel like super woman). Be patient....take it slow and heal. The Wegeners disease is something else. Did you eat a healthy diet too?

Welcome Hammy, I have found this site really informative and supportive. I was diagnosed in Dec 2009 and am continuing to learn about this illness so cant answer all your questions. I found that initially the steriods would not let me rest as I was on 80mg to start with. I understand that Methotrexate takes a while to get into your system and rest is important. I listen to my body if I need sleep or rest I do. It can take a long time to get into remission and off Pred. We have some very knowlegable people on this site who Im sure will answer your questions with a bit more depth.
cheers Col 23

"healthy eating"!! Don't make me laugh!

A runner and healthy eating might go together but mix in a trucker and were are back to fry ups, chocotate and cakes.

I ran to keep the weight in check. The more i ate, the further i ran...hence the marathons!!. Oh I do enjoy the freedom, sence of achievement , views and camaraderie too.

I know that will have to stop and I will have start eating more things which don't even have legs or fins with which to escape such as bananas and vegetables...... seems unsporting somehow!!

hi Hammy
i took mxt and preds last year and thoght i could carry on as normal
in therory yes but put into pratice no
used to take mxt on a saturday and was on go slow until about wed and i didnt listen to doc advice about resting and listening to own body
i would push myself then end up with total burn out for days
now a year on im taking another chemo drug but resting and only doing what my body tells me to and yes the naggers on the site have stopped or made me do the right thing on many occasions too
if only i could give up the triple chocolate muffins they look far better than any banana !
The one message i learnt early on is take on day at a time and not to beat myself up about things
opps i thing ELephant and Sangye have started to rub off on me im starting to nag
BUT this is a great site for help and friendship to help us through
DEE x

Hi Hammy, welcome to the group! It's great that they caught your Wegs early on. Don't feel bad that you don't have worse symptoms--Wegs is no breeze for anyone.

So... I hate to say this, but you're just gonna have to adapt your lifestyle, at least for the time being. If you continue overexerting, you can actually turn a mild case of Wegs into a living nightmare. Once that happens, there's no going back. It's a type of denial we have, thinking we can just take the drugs and go on with our lives business as usual. You've already seen that working your usual hectic pace is too much. Running on top of that-- yikes. And running to compensate for a poor diet is a very bad idea. You have got to fix that diet if you're concerned about weight. Another concern is that pred makes it very easy to rupture tendons and ligaments, so running is not safe.

I'm sorry. I'm telling you the hard truth and wish I could say you can keep your life as is and you'll be fine. "Slow and steady wins the race" should be the Wegs anthem. The more you push it, the longer you stay on high doses and/or stronger meds, and the longer it takes to get into remission.

Take advantage of the fact that you have mild disease. The drugs and dosages you're on won't wipe you out or do so much lasting damage that running is never an option again.

Thanks for your input Sangye and for the other welcoming replies.

The pen is mightier than the sword and to see what, if I'm being honest I know, in black & white, hits home a lot harder than a words in a consultation, where one can listen, but often hear only what you want to!

My main consultant did say to stop running but when I went back for a review I saw someone else who said that it would be ok if I kept it reasonable. What is reasonable?

Bottom line is I will stop running and listen to my body. Don't see my consultant for 8 weeks so it will give me time take control and see what happens to my symptoms.

With regards to my diet, my answer was a little 'tongue in cheek' and whilst not perfect as I am always picking, is not too bad either. Always room for improvement though! I do need to make changes and remove the weight I have gained..... just not sure I am ready for this at the mo. But it will have to be addressed.

Not sure that I should show your reply to the wife as I can feel " I told you so" coming on. Lol.

Welcome Hammy, Wow did Sangye hit the nail on the head when she said "Slow and steady wins the race". I never ran a marathon but I worked 12 to 18 hours a day and loved it. I tried really hard to keep my pace and just deal with the meds. Despite Sangyel, elephants and Jack's nagging and even though I believed them...I thought I could manage, thought I had to. I got knocked down hard and am now only doing 1/2 days and spending a LOT of time resting (really a hard thing for a workaholic to come to terms with). I agree with you that is by far the most friendly and straight talking site. Glad to have you join us. You seem to have a great sense of humor, which I believe is essential for a healthy survival.

LOL-- Hammy, you have no obligation to show that post to your wife. :D

Hammy, I have nothing to add but welcome, and I am really enjoying your writing style.