Is this the norm or a flare?

[pwc51]

RTX round 1 today - went without a hitch, just took time. RTX round 2 in 2 weeks. Let's hope it is as smooth.

Pred now 20mg step down to 15mg in 2 weeks and the 10mg 2 weeks after that but I think my MTX may go up to 20mg injected - oh the joys......

[pberggren1]

I hope you are in remission soon.

[pwc51]

Thank you Phil - if it works like last time I will be in the medication maintained remission fairly quickly. My concern is how, if ever, I can get to a stable nil medication state or, and I guess this is more likely, find the right medication level that maintains the remission and stops this flare / remission cycle.

Peter

[pberggren1]

I never worry about getting med free now. I just take one day at a time.

[drz]

I never worry about getting med free now. I just take one day at a time.

My doctors have reassured me that many people who had organ transplants take drugs like pred and azathioprine for the rest of their lives at similar dosages and suggest that I will probably do so too. The hope is like Al said that some new research break through will discover some workable cure that may change this for all of us. Until then maintenance meds and hope flares are few and mild and easily treated. But like the transplant recipients we are much more likely to die from an infection than a serious flare of GPA.

[annekat]

My doctors have reassured me that many people who had organ transplants take drugs like pred and azathioprine for the rest of their lives at similar dosages and suggest that I will probably do so too. The hope is like Al said that some new research break through will discover some workable cure that may change this for all of us. Until then maintenance meds and hope flares are few and mild and easily treated. But like the transplant recipients we are much more likely to die from an infection than a serious flare of GPA.

My doc is very much into having me on as little drugs as possible. I think I flared this winter because I was on too low a dose of MTX. He doesn't talk about infections so much as potential liver damage or whatever the risks are for a particular drug. I'm sure his goal is to get me off the meds, but I'd rather stay on them at some minimal level if it keeps me functioning and to avoid flares.

[Alysia]

RTX round 1 today - went without a hitch, just took time. RTX round 2 in 2 weeks. Let's hope it is as smooth.

Pred now 20mg step down to 15mg in 2 weeks and the 10mg 2 weeks after that but I think my MTX may go up to 20mg injected - oh the joys......

Hi,
your treatment is very similar to mine. Im a month after the second RTX, for my first time of it. I started feelling better only last week, and it is hapenning very slowly. Im almost "measuring" the amounts of nose's "stuff", the numbers of coughs, the hour of the day when Im totally finished, and I can see, little by little, some improvement. not enough yet...
I hope it will work soon for you. remmision is waiting to come.

[drz]

My doc is very much into having me on as little drugs as possible. I think I flared this winter because I was on too low a dose of MTX. He doesn't talk about infections so much as potential liver damage or whatever the risks are for a particular drug. I'm sure his goal is to get me off the meds, but I'd rather stay on them at some minimal level if it keeps me functioning and to avoid flares.

Damage from GPA to organs from the drugs we take is a valid concern as I have taken many of those drugs already for my diabetes and already have significant kidney damage from both Wegs and diabetes. My monthly labs monitor both kidney and liver function and so far they seem stable at present levels. Another Weg attack in the kidneys would be a disaster for me so taking the maintenance drugs of 175 mg azathioprine and pred at 5 mg seems a much lower risk for me according to my doctors. They are uncertain if this will prevent flares or just hopefully make any flares milder so they are easier to control before they do any significant damage since the research on this has NOT yet reached any consensus. I suspect any results of such research will also vary a great deal according to individuals health history and age and also some other yet unknown factors

[annekat]

drz, I agree that we should be concerned about the damage these drugs can do, and not take them lightly. But my doc has consistently had me on lower doses that are recommended for my body weight, according to what I've seen on sites for the various WG specialty centers. I feel he may have prolonged my treatment by doing this, made me be on CTX longer than I would have if at the normal dose, etc. I don't know. I realize that I don't understand these drugs as well as doctors do. Somehow or other, he got away with it, as I'm now doing pretty well, feeling the best I've felt since dx. But I'm still on the meds, and I'm afraid, for example, that if he makes me go from 15mg./wk. of MTX back to 10mg., I'll have another flare. Both of those seem like pretty low doses, but the 15mg. seems to be working really well.