My Situation

[FallGirl]

I've been really stressed out lately and I want to write up my situation and see if you guys can help me out with some advice.
Right now I'm taking 4 5mg Prednisone pills a day and twice a day I take a 50mg Imuran pill. I started with 9 of the 5mg Prednisone and had to decrease by one pill every 2 weeks. I started with 1 50mg imuran and after 2 weeks I went up to taking the 50mg pill twice daily. Every 2 weeks I get a blood test done and the results are sent to my GP and the Rheumatologist. I had an appointment to see the Rheumatologist at the beginning of July but it was just days after I moved to a new house so the appointment was rescheduled for September 1st. Meanwhile I was supposed to be lowering the Prednisone every 2 weeks and by September 1st it would be lowered to nothing if I was lowering it 5mg or 1 pill at a time. Still I haven't heard anything from the Rheumatologist about what I'm supposed to do so right now I've stuck to taking 4 pills (20mg) of Prednisone and the 2 pills (100mg) of Imuran.
I went to see my GP today and he told me that me blood test results have been fine. Nothing out of the ordinary except for a bit of a high white blood cell count which he says has to do with my taking the Prednisone so it's normal.
My Rheumatologist, who I've only seen once since I've been diagnosed with Wegeners, is trying to get me off the Prednisone in 6 months he told me. This appointment I was supposed to have in July we were going to talk about where to go with the medication the dosages I had every were to last up until that appointment and then we'd see.
So I don't really understand the difference between Imuran and Prednisone. I don't understand if I can be off the Prednisone and just taking Imuran. It's been a few months since I started on medication for the Wegeners, I feel like this is being rushed.

I have this major frustration with my Father because he won't listen to me when I tell him things that I've read on here from you guys. It's like he tells me you guys don't know my situation and everyones is different and I understand that. And I want to believe the Rheumatologist knows what he's talking about but the fact that I haven't heard from him. And I tell my Father that I want to talk to this guy before September 1st. But now I'm just going to stay on the dosage I've been taking for almost 3 weeks and wait to talk to the Rheumatologist on the day of my appointment. And I can't call him myself, I have social anxiety, it's very hard for me to pick up a phone and talk to people, it's this whole big issue so he talks to doctors for me and makes appointments and whatever I need.

I'm having alot of trouble articulating what I'm trying to say right now so I'm going to post this for now and I'll have to post again.

[Jack]

Fallgirl,
That was a great post, you expressed yourself very well and I can understand your frustration and confusion over the medication. Perhaps a more understanding doctor would have explained things better and put your mind at rest.

It sounds like your condition is progressing just fine at the moment, but things need to progress slowly because this disease has a habbit of turning round on you. The best indicator is how you feel rather than blood test results. Keep in touch with your body!

In simple terms, Wegener's causes your immune system to attack your body and cause inflamation in the same way that an infection does. For this reason the treatment attacks it on two fronts - the Imuran suppresses part of your immune system, while the Prednisolone is mainly there to stop the inflamation and subsequent damage. Both of these drugs have long term side effects which is why the docs want to get you off them as soon as you are able to cope without.
The usual regime is to switch you from Imuran to a less toxic alternative as your treatment progresses and at the same time to lower your steroid dose. If you reach full remision, which sounds possible in your case, you may end up dropping most of your medication altogether.

I think you should be seeing your specialist a bit more frequently. I moved from weekly visits to the three month visits that I am now on and I was diagnosed nearly 25 years ago!

[GeorgiaInOhio]

I see my PCP once a month, and go in anytime I feel strange or even have questions. I see my specialists at least once a month between all of them, and my cardiologist even calls to check up on me. I feel lucky having such great doctors and when I read peoples posts where there doctors just seem to blow them off, it really upsets me. I even feel guilty that I had the luck I did in finding the people that I did to help with WG. But Im greatful.

my advice to you is trust your gut instincts. Just like jack said, you have to know your body and go by that. Same goes with your thoughts. If you believe you need to see the doctor sooner, you need to do it. I have a friend with social anxiety and she has been working on it for a long time. she has improved dramatically by finding a way to face her fears and just do what she has to do. i know that is easier said than done, but (and your going to think im crazy when i say this) one thing that helped her ease the stress of talking to people, was when the fears started coming to her, telling her that she couldnt do it, didnt want to deal with having to talk to someone, she started hearing those in a donald duck voice. yes, i told you youd think I was crazy. but i used to have anxiety attacks, and I tried it, and let me tell you, i have only had one anxiety attack in 6 months and I instantly new how to put it to rest. It actually happened when i was in the hospital finding out about my WG. Lets just say when you tell yourself in your head, in a donald duck voice, "oh my god, your going to die. how can you do this? everything is falling apart, your gonna lose it!" it shuts off that since to freak out like you wouldnt believe!

I am not saying this works for everyone, and i know it sounds like the dumbest thing ever, but it works, and it gets rid of anxiety like i have never had anything work before. people with anxiety im sure know what i mean when i say "voice". im not nuts, not a sychitso (sp?), but you know what i mean. Im only saying all this because i think it would help you start being more in control of your situation and be able to take on more responsibility so your father wouldnt have too. I now this is a huge change for my family and its stressful for everyone, and even tho they mean well, you are the one who knows whats best for you. Its also very impowering to know you are the one who took control of the situation and got it taken care of! That helps with mental healing too! all over well being is the key! It cant hurt to try. and if it doesnt work, well then youve at least tried something new. lol. I just know you need to listen to yourself. trust your instinct, and if you feel like you need to do something, do it.

its great you posted, and could get your thoughts out. thats a huge step right there. everyone suggested when i joined the group to start a journal, and that really helps too. just getting your thoughts out on paper- youd be amazed how that helps with anxiety on a personal level. try that and see if it settles your mind a bit too. you dont need depression. every little bit of venting helps, so keep posting as well! everyone here is so nice and has made me feel very welcomed.

sorry i dont have more advice, and only crazy donald duck talk. LOL. I hope it helps though. I know it did for me and my friend.

Take care

[Sangye]

Hi Ami,
I admire your courage in reaching out like you have. I hope you'll give yourself credit for having done it. You articulated everything just fine!

I wonder if any of your docs have explained how pred exacerbates anxiety. I hope you are seeking help for treating it. You deserve to have all the help you need.

Are you seeing a Wegs specialist? (Not just a rheumy, but someone who sees Wegs all the time) If so, then you can trust the rate that they're lowering the drugs. If not, I encourage you to find one and at least be able to rest your mind about that.

It's important to listen to your body the way you are. If you feel you need an appointment sooner, please know that it is perfectly alright to request one. Wegs can surprise even the most skilled doctor, because it seems to have a mind of its own. A good doctor will address your concerns.

I imagine interacting with the doctor at appointments might be very stressful for you. One thing you can do to help is to write down your questions and concerns ahead of time. If it's overly stressful to ask them out loud, hand them to your doc and ask him/her to address each one. You can bring a tape recorder and record the answers, too. That way, you know your questions and his/her answers are taken care of, and you don't have to be "on." Take good care of yourself, Ami.

[coffeelover]

I am so happy, and I am sure I speak for all of us here that you found us Fall Girl! Your post was very well articulated and I hope you use all of these very informative people on this site to help you understand this WG and to help you move forward with your recovery.
As Far as Anxiety, it does get difficult and I found, annoying, to continue to explain yourself to the docs you end up seeing. I eventually got to the point where I do not even wait for the doc to talk to me, I talk to him/her. I figure I am the one with this chronic disease and I would not wish this on my enemy, so I and I alone know what I need and want. It is OK for the Doc to suggest alternatives, but they DO need to be able to keep you involved in your decision making and they must understand that you are not visiting them on a whim!
My rheumy put me on the trazadone to help me with my sleeping, but also with my anxiety. Also my BP meds have helped, I believe. So it takes times and drugs to get things under control. I really hope you overcome your anxiety and are able to take charge of your life. Please do not be afraid to ask for help.
Lisa coffeelover

[Doug]

I am so happy, and I am sure I speak for all of us here that you found us Fall Girl! Your post was very well articulated and I hope you use all of these very informative people on this site to help you understand this WG and to help you move forward with your recovery.
As Far as Anxiety, it does get difficult and I found, annoying, to continue to explain yourself to the docs you end up seeing. I eventually got to the point where I do not even wait for the doc to talk to me, I talk to him/her. I figure I am the one with this chronic disease and I would not wish this on my enemy, so I and I alone know what I need and want. It is OK for the Doc to suggest alternatives, but they DO need to be able to keep you involved in your decision making and they must understand that you are not visiting them on a whim!
My rheumy put me on the trazadone to help me with my sleeping, but also with my anxiety. Also my BP meds have helped, I believe. So it takes times and drugs to get things under control. I really hope you overcome your anxiety and are able to take charge of your life. Please do not be afraid to ask for help.
Lisa coffeelover

Exactly! We preach and preach and preach about preparing for your doctor's visits by research, by maintaining a journal of symptoms and reactions to drugs (and questions for the doctor!). The best doctors are good listeners who answer your questions fully, with all the information you need to know. One advantage of research is that you become familiar with medical terms, so you are speaking in language that is specific and meaningful to your doctor. It also speeds up your doctor visit.

[jola57]

Well put Doug

[Jack]

But unfortunately, many people are not in a position to take up the good advice for a variety of reasons.

[coffeelover]

for me that reason is denial......

[jola57]

I wouldn't say that of you Lisa at all, here you are discussing all your and our symptoms so I don't think its denial maybe lack of trust in the caregivers to do something about your hurts when you let them know.