Is it in my head??

[stikker]

Do you ever start to think your crazy and you're imagining things.

After cytoxan, I've had trouble finding a drug I can stay on long term. (AZA =head aches and fevers Methotrexate= hair falls out in clumps) After about 6 months of jumpng from 1 to another I am finally on Cellcept.
I don't think t's working for me. Now increasing hearing loss, mouth sores(new) and muscle/joint pain returned. It has now been decided that it's a flare. They increased cellcept to 3000 and pred to 40(I'm miserable).

Now I have eye pain. A nagging pain in the back of my eyeball. I ignored it for a couple of days, but it isn't going away. I finally emailed them today. They don't think it's wegs but want me to see an opthamologist. My eye isn't red, vision is fine.

My point is, this is my first flare. I'm starting to feel like I'm being too sensitive to things. I am afraid of letting the disease get a foothold back in, so I'm over-reacting to things. This will only hurt me in the long run. I'll never get off the meds if I keep developing new syptoms every month.
stikker
Anyone else feel like this?? These symptoms are so vague and non specific. It is starting to make me crazy!

[pberggren1]

It is not in your head unless you are having headaches and sinus problems and things like that. All of your symptoms that you list could certainly be Wegs but only your Wegs specialist will know for sure what is going on. You do see a Wegs specialist, right? I forget what part of the country you live in.

[stikker]

I see Dr Merkel. I'm from Massachusetts. I couldn't do this with out a specialist!

[pberggren1]

I see Dr Merkel. I'm from Massachusetts. I couldn't do this with out a specialist!

Merkel is one of the best when it comes to Wegs so you are in good hands.

[elephant]

Just let him know what is going on with you. You know your body more than anyone and if you feel deep down that things are going on they probably are.

[Sangye]

I understand the self-doubt. I'm doing that lately and I've done it before with active Wegs. It helps me to keep a daily log of AM/PM symptoms and my med dosages. That lets me see the symptoms that don't change over long periods of time vs the ones that come out of nowhere.

[ScreaminMeanie]

That's a good idea, Sangye, and something I should probably do. I go back and forth between freaking myself out over nothing, and completely ignoring things that could be truly serious. Neither is a conscious decision, so it would really help to keep a log to track trends. Drug dosages and even what I ate that day would probably be good information to include. Level of activity, stressful events, I can think of all kinds of things that would be good to keep track of.

[Sangye]

Yup, I include all that. I made a Word table and it takes about 2 mins a day to update it. It's been one of the most helpful things I've done for myself.

[NicShaf]

I do a similar daily update in my date book...I'm not as tech savi as I'd like to be. It has been especially helpful for me since I am in the beginning stages of my diagnosis and treatment. I keep track of all the things mentioned above, and when I meet with my doctors, I can go over everything. Great suggestion Sangye.

[ScreaminMeanie]

Sangye, would you mind sharing the "framework" of your table? If you wouldn't, I'd love if you could email me the table structure minus your personal data.........you've got your ducks in a row more than just about anyone I know, and I hate re-inventing the wheel. ;)

[drz]

Do you ever start to think your crazy and you're imagining things.

After cytoxan, I've had trouble finding a drug I can stay on long term. (AZA =head aches and fevers Methotrexate= hair falls out in clumps) After about 6 months of jumpng from 1 to another I am finally on Cellcept.
I don't think t's working for me. Now increasing hearing loss, mouth sores(new) and muscle/joint pain returned. It has now been decided that it's a flare. They increased cellcept to 3000 and pred to 40(I'm miserable).

Now I have eye pain. A nagging pain in the back of my eyeball. I ignored it for a couple of days, but it isn't going away. I finally emailed them today. They don't think it's wegs but want me to see an opthamologist. My eye isn't red, vision is fine.

My point is, this is my first flare. I'm starting to feel like I'm being too sensitive to things. I am afraid of letting the disease get a foothold back in, so I'm over-reacting to things. This will only hurt me in the long run. I'll never get off the meds if I keep developing new syptoms every month.
stikker
Anyone else feel like this?? These symptoms are so vague and non specific. It is starting to make me crazy!

I think most of us except for a few lucky ones have been through a few flares or ebbs and flows of Wegener's. I think it is the nature of the disease, unpredictable and variable. Even when the change over all is progress or improvement, new symptoms or problems can show up. For me the key is to try accept these new challenges and focus on the overall state of how I feel. I have been having the same symptoms recently you mention above, but my lab numbers are generally moving the right direction and I feel a little better and stronger overall and have faith that my present treatment regime will eventually get the disease under control. I remember what my colleague told me who was diagnosed four years before me, "the first year or two were rough, but if you can survive the treatment, things will get better". He has had several periods of remission but that also means he has had several relapses too. You are not expected to be happy about setbacks along the way. It is OK to feel frustrated and disappointed. Just remember the present problems are not permanent and things will change again, hopefully for the better as they find the treatment option that works best for you. Best wishes for better health.

[stikker]

I think that my problem is that this is my first flare. I don't really know what to expect. How subtle will the changes be that I am watching for? I don't want to wait TOO long. I want to nip it quick but not over react. I feel like it's a fine line that I'm walking....
I am also not really sure that the Cellcept is working. I don't really think he's sure either. He keeps saying we still have rituximab. I'm running out of options!!
stikker

[Sangye]

Flares are different for each person and each flare is different for the same person. Some flares come on gradually and you can tell subtle changes far in advance of the flare really taking hold. Others seem to come on quickly, with almost no warning. I think the only thing you can do is be mindful of what your body is doing, keep a daily record of general symptoms and not be overly involved in analyzing it. There's a happy medium.

[ScreaminMeanie]

What Sangye says is so true. I was diagnosed faster my first time with WG (4 months) than I was with my first flare (almost 8 months). This flare was nothing like the original onset of disease (except that I had some form of skin lesions both times, but they were wildly different), and that kept me from pushing to go to a rheumatologist sooner than I did.

Granted, part of it was that since my remission lasted so long (19 years), I was determined that it was NOT going to be WG again! I was basically in denial. I guess the moral of the story is, as Sangye said, try to find that happy medium between being in denial and being hyper-paranoid. I know, easier said than done. :) I'm going to start keeping a log; I think it will really help.

[drz]

I think that my problem is that this is my first flare. I don't really know what to expect. How subtle will the changes be that I am watching for? I don't want to wait TOO long. I want to nip it quick but not over react. I feel like it's a fine line that I'm walking....
I am also not really sure that the Cellcept is working. I don't really think he's sure either. He keeps saying we still have rituximab. I'm running out of options!!
stikker

Our job as the patient is to report all changes we notice and how we feel to our rheumatologist. His or her job is to sort it all out and decide if any change is needed in our treatment. No one knows for sure what treatment will work and just cause it worked last time doesn't mean it will be the same the next time. In time though it will become clear to your treating doctor and you if the treatment is working, or if change is needed. No doctor will guarantee an outcome but they can guarantee that they will keep trying to find a treatment that works for you. It may help you to know that for most people the flares are generally easier to treat than the initial treatment because the diagnosis is generally easier to figure out and since they are monitoring your health most likely it will be caught earlier when treatment is easier and more effective.