Baseline Symptoms?

[Lauren]

So for the past several labs, everything has been coming back normal. Each time, I have felt like this is a mistake because I still experience symptoms. My ears seem to always have pain in them. I will get the random and occasional spot on my foot which will fade fairly quickly. My knees have sharp pain. I start getting toothaches every once in a while. Anyways, they are switching me to Imuran soon, probably next week. I so badly want to be off of the Cytoxan! I started IV ctx in September, each month until the end of December. I have been on oral ctx ever since. I know ctx is a terrible drug... But I am afraid that I may not be ready for the Imuran. They said we will test it out, and if I start to flare we will probably go with Rituxan. However, they said I may always experience baseline symptoms even if everything is coming back normal on my labs. Does this make sense?

[delorisdoe]

yes...:sad:

[Lauren]

ughhhh... encouraging. lol. At least I can be sure it's not all just in my head and I'm not going crazy!

[Chris G]

You're not crazy! If I'd been thru what you went through, I'd be scared to step down too. But it sounds like your docs have a good backup plan, with the rtx in their back pocket, should anything crop up. All you can do is be vigilant, and let them know about any new or worsening symptoms.

[drz]

I am on same plan. Now on Imuran and Rituxan is backup plan if I have a real serious flare. I too was very happy to get off the Cytoxan but it was necessary to knockdown the GPA to a level where Imuran could manage it.

My rheumatologist told me that even when you are considered to be in a drug induced remission you can still have residual symptoms of GPA but it doesn't mean you are having a flare or need more aggressive treatment. Such symptoms also tend to show up when you are tapering your prednisone and again it doesn't necessary mean you are having a flare. Symptoms from prednisone taper tend to disappear in a few days usually.

Telling the difference is a matter of experience I guess so that is why everyone tells you to have a doctor that has enough experience to understand your symptoms and knows what treatment is appropriate.

Good luck and welcome again.

[elephant]

Yes, I too have borderling symtoms but that is partly from damage done from GPA. I was hoping for a symtom free remission. Oh darn!

[Jack]

Even though I had many years of remission I was never symptom free, but the problems were all on a level that I could cope with. There are few of us that ever get back to being 100% fit and problem free.

[renidrag]

I agree with all. I am not 100% nor do I expect to be. It is just a matter of accepting what I can do. My feet still hurt, my knees still bother me from time to time, and I also have COPD, but it beats the alternative.
Dale

[JanW]

Yes it is possible to have baseline symptoms and still be healthy with this disease. I was able to achieve remission rather quickly and while my problems will end up being mostly surgical in nature -- I have stenosis and a saddle nose which will both require surgical repair -- I can honestly say that I am almost back to where I was before diagnosis. I have problems in one ankle that bother me, but I had those problems for more than a year during/after diagnosis, and docs seem to agree that it's more likely because of damage already done vs. symptoms of the disease (by that I mean that the viscosity of fluid around your joints can change somewhat, and permanently, with AI diseases, so even in complete remission I have that, and ergo, don't have as much mobility in the ankle as I once had).

I do accept that everyone here preaches about the 'new normal' - goodness knows that I do that as well, because your outlook does change when you have a chronic disease -- however, for many, the new normal can look and feel pretty much like the old one.

[Sangye]

Lauren, they use ctx or rituximab (rtx) to induce remission, then they switch you to a maintenance drug like imuran. It can be very tricky to differentiate active disease from lingering but harmless symptoms. Of all your symptoms the knee pain concerns me the most, as it is often a sign of active disease. However, you've been on ctx a long time. So if it hasn't already gotten you into remission then it probably won't. It is probably a good idea to switch you to imuran and see what happens.

With Wegs it isn't just a question of symptoms vs no symptoms, it's a question of what kinds of symptoms. The BVAS (http://rarediseasesnetwork.epi.usf.edu/vcrc/documents/BVAS%20Assessment%20Training%20Manual.pdf) is the method that's used to determine if one is in remission or not, and to measure the severity of disease activity. Do the questionnaire and see what you find. It might give you some peace of mind about switching.

[Mitch]

Well stated info, Jack. I can never see Mitch going back to his former state. This was in the back of my mind, but enlightening to actually hear someone voice it. D.