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.

Hi Hammy,

Welcome! I concur with the "slow and steady" advice. Believe me, I fought it for a while, but then starting to listen to my body and not worry about keeping up and I feel good!
Lisa Coffeelover

Coffeelover are you in remission yet? Sorry I can't remember.

I wish....but no! I had a very short supposed remission....but flared up rather quickly and I now have stenosis again, but not bad enough to have surgery. Darn Flares!
My goal is to not have a trach put in again...so I am going to behave and succumb to this disease. It may be winning now, but I will win in the long run.

Thanks for asking. How are you doing?

"It may be winning now, but I will win in the long run"

Just how I feel coffeelover. Having tried 'Ha, I'm not really ill and I can carry on as norm' method, I am quickly realising that i have to play along with Wg to hopefully beat it!!

Oh thanks for your welcome, love your aviator... are you really that cute??

I am doing ok, just know that I am boderline to going into remission, but can't quite make it yet. So I see the Wegeners specialist in a few weeks. So I will talk to her soon. Just having sinus stuff like a cold on and off....so wegeners is still active. The good news is no lung nodule and my left eye swelling improved. I found out I have cataracts. Thanks for asking.

Hi
I think I have finally decided to accept the disease too. I pushed it a bit this week to try to be "normal"and ended up with lots of joint pain, head pain and extreme lethagy. Instead of looking at this as a negative Ive decided Im going to be a "spontaneous" person. If I feel okay on the day I will do, if not I wont. Given up making plans and cancelling. Im finally learning to listen to the body. ( I do wish it would stop groaning). Trying to hang in there on the taper to 15mg of Pred.
cheers Col 23

Quote:

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Originally Posted by Hammy8241

"It may be winning now, but I will win in the long run"


love your aviator... are you really that cute??

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Yes, she really is that cute!

Quote:

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Originally Posted by Hammy8241

"It may be winning now, but I will win in the long run"

Just how I feel coffeelover. Having tried 'Ha, I'm not really ill and I can carry on as norm' method, I am quickly realising that i have to play along with Wg to hopefully beat it!!

Oh thanks for your welcome, love your aviator... are you really that cute??

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Honestly, I am not at all cute...but have always had a passion for tweety!
Lisa

Quote:

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Originally Posted by elephant

I am doing ok, just know that I am boderline to going into remission, but can't quite make it yet. So I see the Wegeners specialist in a few weeks. So I will talk to her soon. Just having sinus stuff like a cold on and off....so wegeners is still active. The good news is no lung nodule and my left eye swelling improved. I found out I have cataracts. Thanks for asking.

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Keep moving forward elephant! I am rooting for you!

Thanks Coffeelover!

Update.

Saw Rhummy today. 5 months since diagnosis. It seems bloods are, and have always been fine (except original ANCA) and that they have no markers to measure against except what I can tell them. I do a spreadsheet to give them when I go which summarises my symptoms on each visit and how they have /have not improved. It saves time (& their wrist) and means I don’t miss something out and they can’t say they did not know!

They have ordered another CT scan of the sinuses to see if that helps. We discussed my trip to ENT the other month and agreed it was a waste of time as I saw a locum who put a light up my nose, said it was all clear and even discharged me. Getting new appointment with WG knowledgeable ENT bloke.

Decided that the Methotrexate is not working but they want to try Meth. injections first before going onto the harder drugs, so setting up lessons for me ( I feel sorry for the Orange if they still teach with them).

Added calcium and something else (well I am a man!) to my prescription list as pred now at 30mg.

Agreed that so long as I feel I can manage, jogging on the treadmill is Ok and maybe helping beginner groups with my running club would be fine too. I know that the Pred does increase the risk of injury (Sangye) but it is my mind I have more concerns about. To be able to feel part of something again will help me greatly as I am becoming more and more quiet and withdrawn. Might help with the weight gain .

Clarified lines of communication for help.

Still the only WG patient diagnosed in the Portsmouth area this year.

Just got to worry about my truck driving licence renewal medical next week, and hope that WG does not make a difference. Consultant does not see why there should be but, hey ho, nothing is to be taken for granted with goverment departments.:(

Got to go.

Bought a whole hot cooked chicken . Sitting looking at it drooling (me not the chicken) – pred side effect?:D

Damm it coffeelover how can I be attracted to Tweety - its still sooooooooo cute!!!!!

Quote:

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Originally Posted by Hammy8241

Just got to worry about my truck driving licence renewal medical next week, and hope that WG does not make a difference. Consultant does not see why there should be but, hey ho, nothing is to be taken for granted with goverment departments.

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I asked the DVLC about this when I first had Wegener's and a renal transplant, but they were not interested, but that was for the regular car licence.

Hammy, it sounds like things are moving along. I'm in the same boat as far as no blood markers, and even my Wegs specialist has had to get used to that. They normally give symptoms a lot of weight, but with people like us they have to do it more.

If you have to do mtx shots, the needle is very tiny like an insulin shot. Seriously, you can barely feel it. I had to learn to inject myself into the abdomen with Lovenox-- bigger needle, burning drug-- and really surprised myself at how much I freaked out. In addition to a smaller needle and a painless drug, injecting into the thigh as opposed to the abdomen is much easier-- less anxiety.

As far as exercise, you'll find a happy medium, I'm sure. I understand the psychological need. Exercise was the main way I worked out stress my whole life and being 100% unable to do any of it for several years has been tough. I've learned other ways to cope, but really can't wait to do it again. Have a good time. :)

Well guys and girls, two pieces of news.

1. I finally received back my new driving licence last week (short of staff it seems!) so that’s a relief. Could of done with though last week in Italy as I was going to hire a car for a day or two but it did not matter too much as got lifts (cheaper too)

and secondly, just back from ENT. Nice guy, gave me plenty of time to ask questions and happy to listen to my ramblings. All good news. No sign of WG infection in the nose, throat or sinuses. Hearing is back to acceptable levels (given age!!). Had a pressure test which did show blockage in both ears. but consultant could not identify any reason nor why I kept walking into doors. Maybe its because I was always being told I was 'as thick as a short plank' or perhaps its just the extra width I now carry!

I have really noticed the difference since I started the mtx injections.

Just hope it continues and the WG bug does not read this and doesn’t throw an couple of curved balls my way:angry:

Great news Hammy :thumbsup: DEE x

I'm glad the Wegs dog is behaving, Hammy! I don't think he can read, so you're probably safe. :wink1:

That is wonderful news, Hammy! Keep doing what you're doing. :thumbsup:

Quote:

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Originally Posted by Hammy8241

but consultant could not identify any reason nor why I kept walking into doors.

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Should have gone to SpecSavers!

Congratulations Hammy, it must have been the trip to Italy.... how was the Pope?:thumbup:

Happy news Hammy

Really had to dig this thread out - wow what a lot of new members we have had in the past year!

Anyway update.

Today went to Rhuemy .

All clear from ENT visit last month.

Still had various mild symptoms and had not been able to sustain any significant pred reduction.


Key points/Results:

Increased Mtx injection from 20 to 25mg

Booster armful of steroid IV

Re-test anca blood markers (just for fun as normal bloods don't much)

Recommending me for Rituximab infusions asap (Not approved for WG yet in UK)

Chest x-ray

lung function tests

Also:

Not impressed with the new name and won't be using it.

Not enough change to pay for the car park!

Thats all folks.

Quote:

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Originally Posted by Hammy8241

Also:

Not impressed with the new name and won't be using it.

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LOL Hammy you are a riot.

I'm sorry things aren't moving along as planned on the Wegs front. Hopefully rtx will be the thing that gets it all under control.

Quote:

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Originally Posted by Sangye

I'm sorry things aren't moving along as planned on the Wegs front. Hopefully rtx will be the thing that gets it all under control.

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Cheers Sangye. I've nothing to complain about really - just plodding along waiting for the three fruits to line up on the centre line, trouble is, it can take a lot of spins till they come up.

And you! Five years of stuffing all kinds of substances in your body and all you've got for it are two bunnies - I bet if you were off all the meds there would only be one...then again, they are bunnies! May it be your last year before you get back to work.

Hammy...i liked your last avatar it made my day.

Quote:

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Originally Posted by Hammy8241

Cheers Sangye. I've nothing to complain about really - just plodding along waiting for the three fruits to line up on the centre line, trouble is, it can take a lot of spins till they come up.

And you! Five years of stuffing all kinds of substances in your body and all you've got for it are two bunnies - I bet if you were off all the meds there would only be one...then again, they are bunnies! May it be your last year before you get back to work.

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LOL I love the way you put things. There were originally 3 baby bunnies. Hard to keep them all in line, as you know. :wink1:

Hi Hammy,

NICE approved Rituximab for me, I think they are beginning to recognise it's effectiveness for our condition - just brilliant results so far (3 months) [hopefully, not counting my chickens too soon]. According to the nurses it is being used more widely, in different doses, for other conditions.

My hospital gave me a 'get out of carpark free' ticket each time I left the chemo unit - but I had to ask!

Welcome Hammy, I too was very active and have had to cut back quite considerably. WG presented in my lungs so running was out of the question but in the beginning so was walking and stairs. I can do both those now, although only about fifty yards and then rest. Although I also have COPD I stlll think the WG is partly responsible. Diagnosed August 09 and drug free remission exactly one year ago today. Still do COPD maintenance though.
Dale

Quote:

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Originally Posted by pwc51

Hi Hammy,

NICE approved Rituximab for me, I think they are beginning to recognise it's effectiveness for our condition - just brilliant results so far (3 months) [hopefully, not counting my chickens too soon]. According to the nurses it is being used more widely, in different doses, for other conditions.

My hospital gave me a 'get out of carpark free' ticket each time I left the chemo unit - but I had to ask!

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Hi Peter, Did you have to wait long for the approval?

Quote:

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Originally Posted by renidrag

Welcome Hammy, I too was very active and have had to cut back quite considerably. WG presented in my lungs so running was out of the question but in the beginning so was walking and stairs. I can do both those now, although only about fifty yards and then rest. Although I also have COPD I stlll think the WG is partly responsible. Diagnosed August 09 and drug free remission exactly one year ago today. Still do COPD maintenance though.
Dale

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I know that when they give me an armful of steriod next Wed I'll be able to challange Usain Bolts' world record for a few hours....tempting but I'll behave myself. Just a slow 5k maybe:lol::lol:

Dale, hope the improvment continues.

Quote:

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Originally Posted by delorisdoe

Hammy...i liked your last avatar it made my day.

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Hi Leigh,

I'm on "My favourite food" aviator fad just now -the carrot one was just to show i can be serious......ahemm!!

Quote:

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Originally Posted by Hammy8241

Hi Peter, Did you have to wait long for the approval?

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My consultant asked for rapid approval - I don't think it was longer than a couple of weeks. He was a bit worried that, owing to its cost, they might insist on trying an older treatment first but fortunately they did not.

That is great to be able to celebrate one year of drug free free remission. Happy Anniversary!!!:hug3::thumbup::thumbsup::smile:

Quote:

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Originally Posted by renidrag

Welcome Hammy, I too was very active and have had to cut back quite considerably. WG presented in my lungs so running was out of the question but in the beginning so was walking and stairs. I can do both those now, although only about fifty yards and then rest. Although I also have COPD I stlll think the WG is partly responsible. Diagnosed August 09 and drug free remission exactly one year ago today. Still do COPD maintenance though.
Dale

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Quote:

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Originally Posted by renidrag

Diagnosed August 09 and drug free remission exactly one year ago today.
Dale

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Happy Belated Drug-free Remission Anniversary, Dale! LOL Wishing you many more just like that. :thumbsup:

So after 5.5 years I can finally report that I am off the pred :) It fought me right upto the end and on my final reduction , I thought it was gonna win. But two weeks in, the side effects have gone. I have only been able to achieve this due to the Rtx.

I found that when I was having an armful every 6 months, I could reduce the pred down to 2mg but as the befefits waned, I would have to increase again. Thanks to Geoff and Dr Jayne, I was approved to have Rtx every 4 months instead. This has stopped the dip and allowed me to get my life back to near normal. It has to be mentioned that I have a long way to get back to anywhere near how I was pre WG but am going slowly in the right direction. The next test will be in 16 monthe when my course of Rtx finishes. Will I be in remission or will it come back again? All I know is I am gonna enjoy it while it lasts.

I don't come her now very often. It's not that I don't feel for all of you who are starting the WG journey, because I do, but more because I made some special friends when I was learning all about the illness - some are in remission, some have died, some I am still in contact with - some are just MAD but they are part of me.

I sure you to will create your own group of friends get great advice and in time understand and not be scared of WG. I wish you all well.

So, if luck is with me my next post will be in 18 months after I'm off all drugs - if earlier then you know ...........
Arrrgggg! Its got me..... or is it I got it?

Good luck Hammy.. and congrats for being able to get off the pred. I hope all goes well for you and you are able to get into a drug free remission ... but you don't have to stay away.

Fantastic to hear the news, Hammy. Go enjoy yourself! :hug3:

Can't wait for the good news in eighteen months Hammy. How to make a thread a "best seller?" See "Sangye" in a reply. Hope you are well my friend.
Dale

Quote:

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Originally Posted by renidrag

How to make a thread a "best seller?" See "Sangye" in a reply.

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Nice to know she is still lurking :)

LOL I occasionally take a peek just to make sure you two are behaving. I'm looking at you, Hammy and Dale. :wink1:

Congrats Hammy

Congratulations Paul, I'm sure Mr Choos had something to do with your release from the clutches of Pred!! :flapper:

Hammy,

Congratulations on the total reduction of Preds, I am so glad to hear about your great come back. I am wishing you all the best with the RTX treatments. Keep on Keep'n On!:thumbsup:

Awesome news Hammy.

:hug3::hug3::lol::lol::hug3::hug3::lol::lol: