New member seeking help ref my GPs belief that I may have Vasculitis (WG).

[chsskg]

Hi, I am a 54 year old male that has been a long term sufferer of Rhinitis (14 months). At the end of September 2014 I had a sudden onset of muscle and joint aches in hips, knees, shoulders, upper arms, elbow tendons, and wrists. I have also recently experienced eye problems (scloritis). Following C-ANCA tests which showed high levels I was recently told by my GP that he suspects I have WG. I have been on 30mg of steroids per day for 12 days now and this has helped. I am awaiting an appointment with my Rheumatologist next week and, no doubt, further tests etc that should lead to a more definite diagnosis. Scary times. Any help, advice and support would be gratefully received and, in time, I hope I can reciprocate by sharing my experiences and helping others.

[Greenkit]

Hi, i would just wait till you have been to see the specialist before worrying too much as stress is not helpful with "weg's" .

I too have all the aches and pains but i have learnt to just sit down and not worry about housework especially when the tiredness sets in.

I work full time but have been given (after a 5 month fight) set shifts so that helps with a proper routine.

The weather doesnt help we need warm weather to feel our best, the winter months i think we hibernate LOL

Good luck with your appointment the steroids will work wonders but if you are them long term you will have to be weaned off them and dont worry about the weight gain. Better a bit of extra weight that to be ill.

[chsskg in reply to Greenkit]

Thank you Greenkit. I have been doing a lot of reading so I am well prepared to understand what the consultant will be asking me and why, as well as create a list of questions I want to ask the consultant in return. I am also keeping a diary as I would never be able to remember all the constantly changing aches and pains ive had.

I'm remaining positive because, as you say, its very helpful and important to be that way. For now, the steroids have turned the pains to the mildest of aches and currently only the pain above and behind my right eye is really uncomfortable and tends to ease off an hour or so after I have taken my steroids and co-codomol in the morning. My kidneys are currently ok and I am awaiting the results of a chest x-ray. Im having blood tests weekly so my GP appears to be doing everything he can. Last week's bloods showed calcium levels back to normal and inflammation markers down from previous week. This shows the steroids are working but I realise that its only masking the real issue for now.

I was lucky enough to retire early from work a few months ago so work is no longer an issue. I was employed in a stressful job and it seems to me quite common that people retire from stressful roles and then fall ill! - its as if we dont allow time for ourselves to be sick whilst at work. It appears you have an understanding employer which must help a lot. Oh, and I certainly intend to try and keep warm. Have you been diagnosed with WG?. Take care.

[Greenkit in reply to chsskg]

Hi chsskg, i was diagnosed with "Weg's" in 2004 after 5 months of been really ill but nobody knowing what as wrong with me. It was only when i was admitted to hospital and going through an awful lot of tests i happened to mention i had had another nose bleed, with that i was taken to ENT a camera up my nose revealed a blockage my other nostril was able to take the camera.

After that a Dr came to visit me to tell me i had "Weg's" i had lost 2 and 1/2 stone in 5 weeks so was really pleased just to know i wasnt making it up.

I had with it a really nasty cough nurses thought i was a smoker my GP thought i had lung cancer so weg's is a better outcome LOL.

After medication over a couple of years i went into remission for a 2 years then it returned but as i knew what to look for i was able to get the correct tablets almost immediately.

I have been in remission for about 4 years now the only problem i get is if i get a cold i can be laid up for weeks as the "cough" and breathing difficulties kick in.

I found out last night through a Webinair that i should have the flu jab so i am going to make sure i get that.

I have had the eye problem and with all the steroid's i took (tablets and drops) i ended up with a cataract but it turned out good as after the operation i dont have to wear glasses, which i had to wear from the age of 3 so every cloud

Another side effect of steroids i have arthritis and have had a hip replaced and having the other one done in January after that i will be The Bionic Woman.

My employer of now 17 years hasnt been as good as they should as i know my Weg's was caused by working in a department with 20 years of dust but proving it will be impossible as they still cant work out what causes our illness.

I have had to fight all the way even when i had a lot of hospital appointments they had me in for meetings to discuss my absence.

I even told them that stress doesnt help so why are they stressing me.

After getting my set hours 8-3.30 5 days a week i think there are no more battles to go through, but, if they do come up with something else i know i will not stress i will just go on long term sick HA HA

Let us know how you get on Good Luck

[chsskg in reply to Greenkit]

Hi Greenkit. Glad to hear that you are in remission and have been for quite some time. Fingers crossed for you. I also worked in a dusty office for many years. Ive not had a problem yet with any nasty cough and my GP has told me today that my chest x-ray came back all clear. Aside from my first appointment next week at the rheumatology department, I also have an ENT appointment in mid November and I guess its an opportunity for them to take a biopsy from that area if they so wish. Thanks again for your interest and best wishes to you.

[Nadine99]

Well you sound like my husband's twin brother!! My husband has had very similar symptoms to yourself but his started in Oct 2010. It sounds as though you're on the right path to get the necessary help and treatment you need and from the Vasculitis website you will find lots of information. Don't be afraid to ask all the questions you need of your doctors. It can be quite a long road, my husband has still not got his WG into remission but it will happen I'm sure when they find the right medication for him. So it will be for you. My husband finds it difficult in that he can't do what he used to do - I now keep telling him to do the things he can, I'll do some of the things he used to do and at least I get the ironing done!!!!

You will need the support of your family, get them to read about the illness because you will probably look fine and everyone wonders what you're on about!!

Come to this site for any info you may need, there's always someone to answer your queries.

Healthly wishes

[chsskg in reply to Nadine99]

Nadine99, thank you. Im sorry to hear your husband has not yet found the right medication to get the WG into remission. I guess everyone is different and we all require different balances in the treatments and medicines currently available. I'm also so lucky in that I have a strong and supportive network of family and friends. It makes such a difference. I'm not sure how I would cope if I was going through all this alone, but forums like this show that there is a community out there and people that care. Thanks again and best wishes to you and your husband.

[DevonLottie]

All very sensible advice. I'd just add that if you are diagnosed with vasculitis find out how much experience your consultant has with treating the disease as this can vary considerably.

[chsskg in reply to DevonLottie]

DevonLottie, thanks. Its one of the questions on my list to ask the Rheumatologist!.