Hello Everyone - Newly Diagnosed!

[EmmaC]

I thought I'd introduce myself and explain 'my story', very nice to find this forum and to know I'm not alone. Nobody else I know has even heard of this illness.
I guess my physical problems began in Feb 2010, I had terrible chest pains and aches all down my shoulders and arms. When I saw my doctor, she didn't do much at all apart from a few blood tests (very high inflammation levels), suspected pleurisy and told me to just take paracetamol! I did ask her how I could have pleurisy in my shoulders, and her response was a stern 'It's dry pleurisy!'. Slowly over the year I deteriorated, but it was so slowly I didn't think much of it and thought I just needed a health boost of some kind. It was small things I noticed, like after driving for longer than 15 mins my legs would ache for a few days! In Oct 2010 I moved home, and the pain the next day was crippling. Things went downhill quite fast from then on.
I developed the flu, along with tonsillitis, mouth ulcers, chest pains, and a strange tooth infection. I could barely walk, and by my 29th birthday in December my family were visiting to do my housework, and help with my son (9 years old). The pain in my legs and arms was totally unbearable, I've never known anything like it! It would take me a good hour to brace myself to stand in the morning just to visit the toilet and help my son get ready for school, and I'd shake and pass out from pain. I was eventually managing my day by overdosing on Ibuprofen, but at least at the time it got me through each moment!
Just before New Year, I went to visit a friend, and I noticed my eye was a little bloodshot. Had a great evening with her, then the next day I went to stand and fell back down in agony. My eyes were streaming and I was nauseous, my dad ended up taking me to eye casualty where I was diagnosed with Iritis. By this time my whole eyes were so red I looked like a demon in a horror movie!
I'd seriously had enough, and went to see a new doctor, who was fantastic. He referred me as an emergency to a rheumatologist (never remember how to spell that!), and after a week I was examined and taken seriously. That very evening she (the rheumatologist) called me back up and said I needed to be booked into hospital straight away. After a week of every test going, and a positive ANCA, they first diagnosed me with Churg-Strauss Syndrome as I have asthma. It was just 2 weeks ago when they decided it was Wegener's, as my kidneys are leaking blood and protein, and I have terrible ENT problems? I was put on 60mg Prednisolone, Omeprazole for my stomach, Tramadol for the pains and last week I had my first round of Cyclophosphamide. I couldn't say the dosage of that, I just wanted to go home! I am finally able to walk about slowly, but I get so unbelievably tired! I'm very shaky, and the tiniest of things wear me out. I wonder if I'll ever feel healthy or normal again. But I am so grateful the torturous pain has ended for now. I get achy in my hands and have pins and needles, but the relief of feeling vaguely alive is immense!
Anyway sorry for rambling on for such a long post, thank you all for taking the time to read it!
Emma x

[Brooke]

Welcome to the group! Sorry you had to go through all of that prior to diagnosis! I hope you continue to get better and better!

[pberggren1]

Welcome to the Forum Emma. You sure have had a bad experience. But at least you are on the right track now. I assume from your post that you are on IV Cyclophosphamide? I am just wondering why your doc did this because my doc, a Wegs Specialist, says oral is much more effective and easier to control the side effects. But I am not a doctor so don't take this as gospel.

[DEE]

Welcome Emma hope things start to get better for you DEE x

[delorisdoe]

Hi Emma. I have no medical advice to give as my initial treatment was 10 years ago and things have changed since then so this is all pretty much new to me. I was the same age as you when I was diagnosed. My daughter was 2 at the time, and I knew I was seriously ill when I had to call my mother in law over to help me pick her up out of her crib. She found me sitting on the floor beside the crib crying because I could not lift my screeming daughter out.

leigh.

[EmmaC]

Thank you for your welcomes :w00t:
I am on IV infusion Cyclophosphomide, I was given the side-effects information beforehand and was told most of them are reversible? With regards infertility, I'd decided years ago I didn't want any more children so I wasn't too fussed about that. It sounds very vain, but I'm quite worried about losing my hair! I have a supportive friend though who said we'd turn it into some kind of adventure to go wig shopping and be a different colour each day! I have no idea to what degree hair loss occurs though. I found myself checking out the hair of the other people in hospital having chemo thinking it didn't look bad at all, but then, everyone's different. To counter the risk to the bladder, they gave me some type of steroid IV alongside the chemo. I've been referred to a kidney specialist for a biopsy, waiting to be booked in for that. I forgot to add I had weird weepy skin nodules on my elbows, and night sweats most nights, which have now improved.
To Leigh, that sounds awful! I am lucky in the fact that my son is older, he was a huge help around the house. Although it did get a bit frightening for him to find me lying on the bathroom floor a few times after passing out on the toilet! His school have been supportive, and have an emotional therapist on-site if he needs to talk about it all at any time.
Emma x

[delorisdoe]

well, with oral cytoxan it thins more than anything. A friend of mine had chemo and radiation for pancreatic cancer and her hair only thinned out as well. I never wanted more children either so in that respect infertility was not a problem either BUT if you would like for me to send you a private message telling you how having your ovaries shut down at such a young age affects you negatively I can.

leigh

[Jack]

Hi Emma,

Sounds like things are being brought under control and if it continues to go well you can expect an improvement over the next few weeks, but as with all things Wegener's related, there is no way of predicting which way things will turn. Most people are able to get back to work and live a reasonably normal life once things are in hand so the prospects are good.

Most people don't loose much hair at the sort of ctx dose you will be on, but bladder problems are one side effect that never goes away so you must make sure that you drink plenty and go to the bathroom whenever you can. A side effect that causes more issues is the weight gain caused by Steroids and this is not the only nasty trick it can play!

The red eyes are something I have experienced myself. They may look scary, but the redness soon goes away. Skin eruptions of various kinds are also quite common, there is a whole book full of stuff that Wegener's can cause!

Please post with any questions you may have and I'm sure someone on here will have first hand experience they can share. It is also a good place to come if you are feeling a bit down and want a moan. This is normal and we have all been there, you are under a lot of strain and the drugs can make it difficult to deal with.

[EmmaC]

Well I already have the 'moon' face from the steroids, and my appetite is through the roof! I lost about 4 stone in as many months just before treatment started, but I can safely say being underweight isn't a problem now! Aside from worrying about dying, all I think about is what I'm going to eat next. Even when I'm not hungry, I find I'm staring into the kitchen cupboards for something to eat. I'm craving sugary food more than anything. I need to put a lid on it somehow but I don't know where to start? I'm thinking maybe having something like watermelon or celery (watery stuff) to have on hand to eat but that doesn't hold the calories. I try to move as much as possible without tiring myself out too much but it's very limited. I will get there one day!
I agree Jack about the red eyes clearing up, my eye doctor says my vision is completely back to normal now. I noticed a difference in my eyes only hours after my first Prednisolone tablets. What a relief that was!
Thank you all for such lovely welcomes, I don't feel quite so isolated now!
Emma x

[Chris G]

Welcome Emma - It was certainly a long year for you! I hope that your symptoms improve quickly, and you're pain free in no time!

I had the creepy red eye thing going on a couple of years ago! It's aweful! But at least it's one symptom that gets the attention of docs who would look at us and say "but, you don't look sick!"

[Sangye]

Hi Emma, welcome to the group. I'm so sorry for what you've gone through. Mine began with the joint pain as well and progressed like yours. Unbelievable how bad it can be, isn't it? The prednisone and cytoxan (ctx) will soon take care of that.

The others are correct that the ctx will only thin your hair, though the degree can vary widely.

The best advice I can give you is to find a Wegs specialist asap, even if you have to travel to one. They may not change your treatment plan but they will make sure it's the best for you, monitor you for any changes (Wegs can be full of surprises) and give you lots of good information. It's very common for non-Wegs specialists to overtreat or undertreat. Wegs is very unique.

As far as weight gain from the pred, I suggest you do anything you can to avoid putting on the weight. I didn't know pred caused it and thought I just needed the extra food because of the chemo. It is often much harder to take off that weight than usual since pred changes the metabolism.

[NicShaf]

Emma,
Welcome to the group! I'm glad to hear that your Rheumy got you all figured out and you're on your way to recovery.

I totally get the hair thing, but as I understand it, it is only about a 50/50 chance that you'll lose your hair. That is great that you have such a supportive friend.
Something that put my mind at ease was that my mother-in-law has worn wigs forever, and I was with my husband for probably about 5 years before I ever knew, and the only reason I found out was because she didn't know I was there and walked out of the bathroom without her hair on…she probably could have fooled me for longer than that…my point is, nowadays, they make awesome wigs that look great, so for a temporary fix, no one would even know it was a wig.

Best of luck to you, I hope things continue to improve.

[ArlaMo]

Hi Emma! Welcome and sorry you had to meet us all this way.
I totally know the eat-everything-in-site feeling. Been on pred for just over a year and hoping to taper in about three weeks!
I did lose quite a bit of hair with the ctx, but I think I'm pretty unusual that way. Mine has started growing back - about 1/2-1 inch long now. My husband keeps trying to get me to dye it platinum blonde or pink!

[Red]

Hi Emma, everthing wii get better i am on IV ctx and pred 5th treatment felt a lot better think positive ,be strong, i am trying its hard side affects of chemo not bad yet, nausa , no hair loss .

Your health will improve .



Brad

[vdub]

Wow, you have had a bad go! Over the next few months you will experience all sorts of different things and often times you won't know if what you are feeling is a side-effect of the many drugs or just another part of WG. Although everyone's experience is very different, you can usually ask and get a good idea of what is going on. Sooooo, keep in touch and let's hope everything gets better real fast.....

[Psyborg]

I will add in that I didn't actually lose significant hair with the CTX. It thinned slightly, but most of it has come back in the months since I came back off. Accept where I was already thin in the first place...Oh the joys of being middle aged :)