Newly Diagnosed - In Pain - Western Australia

[Chloey]

Hi There

My names Chloey from Bunbury, Im 25 and live in Western Australia. I was diagnosed with WG and Stills Arthritis about 3 months ago. After changing GP's, he noticed a pattern of me getting sick/antibiotics/time off work etc consistently, for a 2 year period or so every 4-6 weeks! From here I was referred to a Rhuematologist Specialist in Perth as my blood tests came back positive for Antibodies and my levels where through the roof. From there I started on Prednisalone the steroid and Methotrexate the chemotherapy medication. Since then I have ceased full time work and have started cleaning for friends, family, others as it is flexable and i can do it when i have good days. I am only capable of doing a maximum of 2-3 hrs work otherwise the pain I endure is debilitating and I feel asthough my body has been injured or I have fallen over or fallen off my bike or something and its the following day "which always hurts the most", it's such an odd feeling to describe and it's hard to reach out and explain to loved ones when they ask or want to help.

My specialist has prescribed me painkillers but they just make me feel all in the clouds in my head, they don't target the pain or provide any relief.

Feeling quiet alienated !!

[Debbie C]

Hi Chloey,welcome to our group and sorry you had to join. This disease is definatley not an easy one but things do get better. You need to get a dr. that knows what he is doing. How much prednisone are you on,they may need to increase it if you are in alot of pain. Where is your involvement at? Lungs,sinusues,kidney ??? There are several, people on here from the land of oz, The Big Kahuna, who started this forum is from there ( if he's not out traveling around the world-haven't heard from him lately-probably jet-lag !!!! ) but I'm sure they will chime in and give you some good advise. In the meantime just do what you can and take care of yourself.

[jeniban]

Welcome Chloey, There is possable 2 more people on this site from perth. I'm from Newcastle NSW.
The trouble with having auto immune Diseases is the fatugue post exertion. I myself are unable to work at all. If I try and have a "normal" day, the next day or 3 i am wrecked. Do not feel bad if you do not work. Your health is more important

[mishb]

Hi Chloey,

I'm sorry you had the unfortunate need to find this group, but I'm so glad you did.

The Aussie contingency is growing, which, in itself is a little scary.

If you are on facebook - we have started a Group on there called Wegeners Granulomatosis Australia. Come and join us - we have a lady on there from Albany.
Jeniban - you should drop by as well.

Apart from that, Chloey, this is the best Group of people for you to obtain information and also to give advice.

Take care and ......

[Chloey]

Hi there Debra - THANKYOU for messaging me

How do you get better in a sence ??
i was referred to my specialist via my GP, how do pull roots and enquire with another rheumatologist, do you mean a specialist in private practice maybe, or ? I find that my specialist is quiet dumbfounded when he reads blood results and when trying to compile a plan of action, this doesn't allow much faith and scarey not knowing if I'm in the right hands.

im on 5mg of Prednisalone, coming down slowly from 25mg. It isn't in my lungs although when I have bad days it feels asthough someone is tearing at my lungs and rub cage through my back, it's not in my nose but I get blood noses daily and if my body is under pressure will just start dripping, not in the kidneys either "so confusing" ?!?!?

[Chloey]

Really !! Wow, how do I find them amongst such a huge forum ?? I feel like I'm the only one on this side of Australia/World at the moment as everyone I talk to has never heard of WG.

Where is WG in your body ?? Do you find it frustrating regarding the post fatigue and being limited to what you can do daily ?? It's difficult, as you have to think ahead all the time weather your daily activities are going to effect you in the next day or so, ya get caught out sometimes. I get very fustrated and push through, although then I suffer immensely, learning slowly

what have you done for pain relief and have you seeked any alternate or other therapies to assist ?

THANKYOU soooooo much for getting in touch !!

[andrew]

Hi Chloe
I'm an Aussie too Apart from this forum there's also a page for Aussie Weggies on Facebook here: https://www.facebook.com/groups/516643745050360/

It's run by one of the Aussie members of this forum and we have quite a close-knit group.

Glad you found the forum. It's all very confusing and frightening at first but the more knowledge you pick up, the more 'in control' you'll feel and the WG ride will stop spinning so much

[mishb]

Thanks Andrew

Chloey, it's really strange that you don't have any sinus or lung or kidney issues.
Has your rheumy put you through a barrage of tests yet? and a biopsy of an effected area is also required.

Daily blood noses was one of the main symptoms for me and also chronic sinusitis that did not clear with antibiotics. Then it went to the ears and eyes.

You really need to get referred to a rheumatologist who knows what he/she is dealing with, and not one that is a worry even reading blood results.
See if your GP can refer you to the main hospital there - hopefully they have a rheumatology clinic connected to the hospital that can help.
They should organise all of the correct tests, xrays, lung scans etc.

Try not to stress, as this will cause more pains etc, and just know that you are not alone. It certainly starts off as a rollercoaster but will get easier.

[annekat]

Welcome, Chloey! You may find this forum indispensable in getting a handle on what you have, the different meds, the different scenarios for different people. After 3 months, it seems early for you to be all the way down to 5mg. pred, and 25mg. seems like a very low dose to start you on. Unless I'm misunderstanding. Also, if they are saying that your Wegs is not in your lungs, sinuses, or kidneys, yet you are feeling symptoms in some of those areas, I don't understand where in your body they think it is! It can be in just one place or in several, according to specific cases. I wonder, too, about the competency of your docs, or their experience with Wegs, and recommend you follow Michelle's advice above. You might also check the Vasculitis Foundation website where they have a list of docs considered specialists who can either be seen in person or consulted with by your docs. Good luck, and keep us posted!

[marylz]

Hi Chloey,

Welcome to the forum. I'm sorry you had to. I was also diagnosed earlier this year and it is very confusing and the fatigue alone is difficult to deal with. I have found that this forum has been invaluable to me with the wealth of information and support. Hopefully, you will find a competent doctor who will put you on the right meds and make you feel confident in his/her abilities.

Mary