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Shirina
02-23-2009, 01:51 PM
The first week in October 2008 is when it all began. My left nostril was running constantly. Thinking I’d caught a cold I took some cold & flu over the counter
medication. This didn’t work. Nose became blocked, again only on the left side so it was off to the doctor for some relief. Throughout both October and November I visited the Doctor several times asking for medication to help me get rid of whatever it was that I had.
Tried antibiotics and various nasal sprays which did not work, my doctor assumed my symptoms were typical of hay fever given that we were heading into spring.
Then the headaches began, violent is probably the best word to describe them. The pain was so intense, I had never in my entire life felt such pain before, I was in tears and couldn’t sleep, and I couldn’t stand light or watching TV, not even daylight. On the days I was sick at home I’d walk around with an eye mask…I actually thought I was going insane.
Again, I visited the doctor and he mentioned that I probably had cluster headaches which were common in men but not in women. Painkillers – (codeine) were prescribed. He also suggested I go to the hospital for a CT scan just to be sure it wasn’t anything serious, which I did and the scan was normal. Around the same time I lost both my taste and sense of smell.

December 2008
First hospital admittance due to headaches
Emergency doctor consulted ENT Specialists who suggested they try oxygen treatment for Cluster Headaches. 20 minutes was the recommended time however the doctor left my husband & I in the room and 20 minutes turned into 40 minutes. This didn’t work as the pain got worse, much worse, I thought my head was going to explode. I was given some paracetamol but to to no avail. Stronger pain relief was required and I was given two doses of morphine both of which did not work. In the end I was given a cocktail of painkillers & inflammatory pills, Tramadol, Voltaren, Paracetamol, I guess at that stage they were willing to try anything. My left eyelid had also become swollen (this I later found out was due to the lacrimal gland swelling up – another symptom) I spent 3 days in hospital, was given antibiotics with a diagnosis called Sinusitis. A further 4 days later, I was back in hospital again...fatigued, more painful headaches the works…I was back on the prednisone & another antibiotic. I saw an ENT specialist who confirmed the diagnosis was severe sinusitis. He was keen to perform surgery but this would have to wait until January as there were no available days and Christmas was coming up. Spent 12 days in hospital on my second visit and was released 22 December with prednisone & other antibiotics.

January 2009
3 weeks into the New Year and Red spots/rashes appeared on my legs (below the knee only), I’d used an epilator (hair remover) and assumed it was because of this. Then both ankles swelled up which became very painful making walking difficult. The same week the swelling appeared I had an appointment with the ophthalmologist. He look one look at me and mentioned Wegener’s. My husband & I looked at each other, didn’t know what to say, we’d never heard of it before. I can’t even remember asking about it but I’m sure he told us what was involved. Before leaving his office that day he spoke with ENT & our Consulting Doctor who managed my case in hospital and it was agreed that I would go back onto the prednisone to try and settle the inflammation around my ankles. During this week I was also experiencing nausea, stomach pain, loss of appetite and tiredness.
Then on Friday 16 January, after another sleepless night I began coughing up blood and lots of it. Bent over in pain, still feeling nauseous and dry wretching off to the hospital we go…various doctors came & went and all were of the same opinion – that I had Wegener’s so they began treatment using IV Methylprednisolone & Cyclophosphamide. A CT scan & x ray confirmed that both lungs were affected – around ¾ of my lungs which also made breathing difficult, not so great when you also suffer from asthma.
However, I’d responded to the treatment, was released from hospital a week later, (albeit reluctantly from the doctor, he wanted to give me a day pass and then I’d go back at night...I wasn’t having any of that but I did promise that I would take his advice and rest, rest, rest)….when I was released my prednisone was 60mg for 2 weeks then tapered to 40mg. I’m also taking cyclophosphamide, 100mg, Co-Trimoxazole – 960mg, Losec – 40mg, Etidronate – 400mg & calcium pills.
Also taking Health supplements - 4Life – Classic Transfer Factor pills (works with the immune system) & CO-Q10 Omega 3 pills.
I’m so grateful that I came across this site, its fantastic and full of helpful information which can only serve to empower us Weggies and our friends & families, thanks for taking the time to read my story and I look forward to chatting with others.

And finally some information about me and where I’m from. I’ve been married for 12 years to the most wonderful supportive man called Andy. We live on the North Shore in Auckland, New Zealand and have a Golden Labrador called Kane whose 12 years old. Should any of you decide to visit NZ feel free to drop me a line, I'd love to meet up with some fellow Weggies.


Take care everyone,
Shirina

crackers
02-23-2009, 03:56 PM
hi shirina and welcome.thank you for sharing your story with us.i think you did pretty good that it took only four months,albeit four months of hell,to get the right treatment.if you read the other posts here you'll see it took years for other people.it's good that andy is supportive and understands this disease because you can feel so alone when nobody knows what you are going through and how ill you really feel.it's so annoying when people say"you're looking better"but don't see you barely able to climb the stairs or fall asleep after the simplest of physical tasks.i like you am a dog lover.we have a mini shnauzer and a german shepherd.despite the difference in size they are best friends and thanks to this disease i am unable to walk them which is very frustrating.my very understanding wife has to do that.anyway keep in touch you have come to the right place for support and advice.
john

Shirina
02-24-2009, 01:47 PM
hi john and thanks for the warm welcome. i find it incredible that in this medical day & age people have had to wait months if not years to get diagnosed with WG..from reading some of the other posts i can only imagine the sheer frustration and hell these people were going through not only by themselves but their partners as well. i count myself lucky to have been treated as quickly as i was and responding well so far...so things can only get better. Gotta think positive!:)

Sangye
02-25-2009, 01:17 AM
Hi Shirina,
I'm glad (and amazed) you got diagnosed so fast, too. Sometimes a late diagnosis is clearly due to doctor negligence and/or ignorance, or maybe several doctors each viewing only one or two symptoms, and not the big picture. But sometimes Wegs is not obvious. I had severe body pain for a year with no other symptoms. No one would have known to test for Wegs. A lot of people only have an ongoing cold, nothing else. The more I learn about Wegs, the more I'm amazed it ever does get diagnosed!

Jack
02-25-2009, 07:55 AM
Classic Transfer Factor pills (works with the immune system)
Glad to hear you were diagnosed so quickly and are now receiving the right medication. However, I would be very careful with supplements, especially ones like the above. It is intended to boost your immune system which is the exact opposite of what the other drugs are trying to achieve. I would not take anything that is not first approved by your specialist.

Sangye
02-25-2009, 08:50 AM
I agree with Jack about the supplements. This isn't like cancer, where boosting your immune system is a good thing. Before I knew I had Wegs, I was treating my symptoms holistically, including massive immune support. The more I did, the sicker I got. Almost killed me, actually.

andrew
02-27-2009, 07:41 PM
Yuppers...good turnaround on the diagnosis. God love the Kiwi's!!! W00T!!!! I haven't heard of transfer factor pills but I take fish oil/omega 3 daily (8gm). Business might take me to NZ some time this year so I'll be sure and say hi if things turn out that way. Welcome to the forum!!

Shirina
02-27-2009, 10:26 PM
Before I started taking them I checked with my rheumy first as I wasn't sure if they would be suitable considering the medication I'm on and if they would affect my system in any way. He gave me the okay and said they would be fine, from research my husband has done (he takes another version of the same pills) they work to stabilise the immune system as opposed to boosting. They seem to work for me, I haven't had any unusual side effects aside from the WG ones which drive me around the bend and all over the place somedays.

Shirina
02-27-2009, 10:38 PM
Thanks for the welcome Andrew. Let me know when you're in the "Land of the Long White Cloud" it would be awesome to meet with you.
I met my first Weggie last week who I contacted via this site...we had a really good chat about everything..it was definitely what I needed especially when you can talk face to face, sharing your story and any concerns or worries you might have.
We'll be meeting regularly and eventually will start up a support group in Auckland.

andrew
02-28-2009, 08:22 AM
I met my first Weggie last week who I contacted via this site...we had a really good chat about everything..it was definitely what I needed especially when you can talk face to face, sharing your story and any concerns or worries you might have.

That's great news!! I've yet to met my first Weggie but I'm sure it'll be a long conversation when I do!! Let us know when you set up the support group and it can be advertised on this site. Also let me know if you need a website for it. I can get that done for you if you want.

Carol
03-05-2009, 01:52 PM
The local health food shop lady warned me about boosting the immune system. I thought I would try Olive leaf extract but she said no. She did however recommend Herb Geranium tea. Quite pleasant to drink - very like ordinary tea. google it and see what you think. I have drunk it regularly - opnce a day for the last 6 months. My rheumatologist told me at my last visit that of the 70 or so cases he has treated that I am the best and quickest recovery from where I was at, that he has ever had. That was a boost but then I still have ordinary days or part of days - I tried rock hopping at the beach last weekend and just couldn't do it. I had to hold rocks to steady myself as my legs were so shakey.
regards Carol

Sangye
03-05-2009, 02:42 PM
I ordinary shudder when I hear someone getting nutritional advice from a health food store person. BUT thank goodness that one told you OLE is wrong for you. It's great stuff, just not for Wegs.

Not being well-versed in herbs, I had to look up geranium. It's very relaxing (the herb-- not the looking up part). I didn't see other effects that would benefit Wegs directly, so my guess is that it's the mind-body connection at work. Pretty powerful to tap into THAT!

Like any herbs, don't stay on it indefinitely. Take a week off every few weeks.

Freddie Graham
04-16-2009, 05:42 AM
Hi shirina
I am new to this site but your story reminds me of my own at the start of the disease - i even got a steroid injection to cure the supposed hay fever everyone thought i had ( some hay fever)
I am now in my second relapse and feel terrible but being able to chat to others like myself on this site is really great
Freddie