Maintenance Meds

[HopeinTN]

I have been on Cytoxan since October and they say I should plan on 1 year, and so far I only have lung involvement (both lungs- but I do think the kidneys are not far behind). I will have my first post Cytoxan CT scan at the end of March. Not sure what my next drug of choice will be but are most of the maintenance drugs taken orally, or infusion?

Thanks ,
Katrina

[Al]

Orally, HK. Here are we are talking about prednisone, methotrexate, azathioprine (Imuran) and mycopheolate (CellCept). However, the other Big Gun, rituxan, is by infusion, should you need it.

Al

[HopeinTN]

Ok. I think it will all depend on how the Cytoxan is working. Methotrexate if all is good and maybe Rituxan if otherwise. I recall hearing both of these, but again, I think it all depends on the CT scan and how I'm doing at the end of March. Sound right?

I'm just very curious.

Thanks!

[Al]

Ok. I think it will all depend on how the Cytoxan is working. Methotrexate if all is good and maybe Rituxan if otherwise. I recall hearing both of these, but again, I think it all depends on the CT scan and how I'm doing at the end of March. Sound right?

This is about all we can say from here, Katrina. My guess is they will wait on RTX until there is another flare. As for the others, pred is normal; MTX is common for maintenance except where there is kidney involvement, in which case AZA is preferred. If AZA can't be tolerated, then the'll go for the mycophenolate.

Al

[HopeinTN]

All good info. I really want to believe that the Cytoxan is working but I have this gut feeling that it's not, still hoping I'm wrong. I can't explain it other than I continue having pain in my lungs that are the same as before the lobectomy. They keep saying it's healing from the surgery but I'm not completely sold.

[Al]

CTX loses its efficiency, Katrina. After a while, it doesn't do the trick so well. Besides, there is sort of a lifetime limit with it: After a while, the risks outweigh the benefits. If you need another heavy hitter, RTX is what is left.

The pains may indeed be from the surgery, but that does not mean that you do not have to still deal with the disease--or the aches and pains. Let us know what happens!

Al

[HopeinTN]

Makes sense. Right after the surgery which was on 5/23/11 I had pain and healing pain for several months, but then pretty good for several more months. Now again for the last couple months I have the same pain I had initially which led to finding the spots. I think because of the location some are near the pluera and this accounts for some of the pains. Oh well, I will continue to be patient and a good one and hang on for a bit longer.

[HopeinTN]

Oh, and Al, I forgot to mention that most of the pain is in the lung that was not operated on, but does have granulomas.

[Al]

Oh, and Al, I forgot to mention that most of the pain is in the lung that was not operated on, but does have granulomas.
Ah. That's different. And not so fun. How big are these nodules?

Al

[HopeinTN]

I'll have to reference the scans but I think more than the sign it's the location that makes it more painful.

[Dryhill]

I have only had one infusion of RTX so far, but things do seem to be getting better (less pain in the joints, not quite so short of breath and sleeping better). I saw my consultant today and he told me he hopes to get me totally off Pred but may well leave me on MTX for a long time, especially as it does not seem to cause me any problems.

Hopefully your doctor will use whatever maintenance meds he/she thinks best for you and that might well be a little bit of an experiment as we all react in different ways to medicines.

Jim

[HopeinTN]

JIM- I'm up for anything and very excited about the outcome. Ha, everything seems like an experiment with this disease. My joints pains have mostly gone away and were really bad only when we went done on pred by 10 mg. Hopefully you are on the right track.

Al- the odd thing about these pains are that if they were a little lower on my back (I think too high to be kidneys) I'd swear it was another kidney stone. That feeling is all too familiar. They say I don't have kidney involvement and I'm happily surprised since for years I've had blood in my urine and well as urinary tract/bladder issues and stones. I know they aren't related to the disease, but odd similarities I guess.

[pberggren1]

You should be getting of off ctx now Katrina. One should not be on ctx for more that 3 months unless you have a really severe case with major complications. Your doc should be trying something else, like rtx, if you are not responding to ctx.

[HopeinTN]

I agree Phil but my next appointment is 3/27/12 and at that appoitment they will run a CT scan to see if I'm really not responding. They have said the pain in my left lung could be associated with the surgery in my right lung (I'm not sold on that but I hear it can happen). I'm tollerating the Cytoxan and all labs look pretty good so I guess they want to give it a longer try (10/27/11 - 3/27/12). I would say it's not the worst case, but both lungs have granulomas, so it's not great, and they removed the middle lobe and part of the top lobe of my right lung. I've heard of others having to be on Cytoxan longer as well.

[pberggren1]

I was on ctx for about 2 and a half years and I'm still here so I guess overall it can't be that bad.

[HopeinTN]

Well there you go. You are still here with us and bathed. I just realized you are from Saskatchewan, Canada. I had a good friend that was from Regina.

[pberggren1]

No bath so far this week though. Better take a smell before I go out.......lol.

[Dryhill]

Not to worry Phil, I have not had a bath in years ......... oh yes I do shower from time to time. :flapper:

Jim

[pberggren1]

I had a shower today. Was getting a bit smelly.....lol.

[Edie]

i was taking 150 mg Cytoxin orally for 8 month along with prednisone, glipizide and Bactrim. have been in remission for almost 2 years. Mine is limited to kidneys only at this time and hoping to keep it there.

[Al]

i was taking 150 mg Cytoxin orally for 8 month along with prednisone, glipizide and Bactrim. have been in remission for almost 2 years. Mine is limited to kidneys only at this time and hoping to keep it there.Welcome, Edie. Too bad about the kidneys, but lucky for the rest of you; we would love to hear the rest of your story!

Al

[KathyB]

Welcome to the kidney club, Edie! That's has been my primary involvement with the lung involvement happening which led to diagnosis. I had pneumonia in late October, but it was from immune suppression from Pred and 4 weeks of Rtx. I went from a creatinine rate as high as 4.67 during my diagnosis phase and have leveled off to around 1.8. No dialysis either! I understand the kidney piece is the deadliest, so watching diet is critical to reduces strain on kidneys. How much are your's working? (My left is wrecked due to polycystic issues and my right works at about 50%. WG destroyed the other half.)

[Edie]

went to my primary because my feet swelled like crazy. So she told me that i had congestive heartfailure(according to EKG), i didn't believe her, next morning she called me and told me she was wrong, it was indeed my kidneys (m i argued the fact that it wasn't my heart but my kidneys) and to please got to ER.
Spend all afternoon in the ER with 8 docs working on meand by 5 pm i was admitted. Everything I was tested for came back negative.
They ruled out cancer and Lupus, but they just couldn't figure out what was going on. In the meantime they started me on megadoses of Prednosone (intravenous),started me on dialysis (twice in ten days i was there)
My creatinine was 8.7 and I wasn't expected tp live.( actually had my doctor sit by my bed to tell me that there was nothing they could do for me, and it's in Gods hands. (proved them all wrong). day nine finally strong enough for needle biopsy which confirmed what i had already suspected .
at this point i have 80% function. i did 150 mg Cytoxin, Prednosone, Glipizide(Prednosone gave me forced diabetes) and procardia to keep my bloodpressure down.
Been doing very well. Creatnine is down to 1.2 as of my last bloodwork. just hoping it's gonna stay there.
Diet is a struggle on daily basis. between no salt, sugar and animal proteins what's left to eat. lol
I did buy an Ionizer which makes Alkaline water (removes all the acidic parts). i really think this has made a big difference as well.

[HopeinTN]

Edie- it sounds like you've had a long and hard road so far. I wish you the best and hope you continue doing well!

[Edie]

didn't think it was all that bad...maybe because i never felt sick,except swollen feet. and during treatment i kept busy with research, work and family. am in remission and hope to stay there for a long time.

[drz]

What a miraculous recovery! Wow! Very impressive to bounce back like that and so quickly. Somethings must have been on your side and "The Force" must have been with you. Sure glad you made it and are able to join us here. Your story will help many people find hope when dealing with this horrible disease.

[pberggren1]

Just be careful not to fall to the dark side......lol.

May the force be with you.......

[Al]

Edie, it is amazing to recover that well! With your creatinine level, I think most nephrologists would have predicted a lifetime of dialysis. But watching the diet does help take the pressure off the kidneys. Keeping salt low, I've learned how to cook differently, and use a variety of spices that I had not known much about. I've not heard other docs or nutritionists recommend "no animal protein", though I minimize it on other grounds. Most dairy, for instance, is high in phosphorus, with can be hard on kidneys. I have heard recommendations of very low protein diets (substitution raw amino acids) to keep dialysis at bay, but this does not seem to be mainstream. But it does all point up the juggling inherent in menu design: You do need a certain intake of the essential electrolytes, for instance. Great inspirational message!

Al

[Edie]

i was told by 2 nephrologists that animal proteins will aggravate Wegeners, and so will stress.

[pberggren1]

Animal proteins? Seriously? I have never heard that before.

[Edie]

yes, i try to eat only fish, chicken and turkey, no beef or pork. eat more beans and tofu for the protein. being diabetic doesn't help either, very little fruit and even so many vegetabels that you can't have makes it even harder yet.

[Sangye]

Welcome to the group, Edie. I'm also surprised and pleased that your kidneys bounced back so well. Are you off pred and still diabetic? Most of the time steroid-induced diabetes resolves when you decrease the pred.

[HopeinTN]

Speaking of creatine, why would a creatine number drop below the normal range? I would think the lower the better?

[Edie]

At this point I am borderline diabetic and I am off prednasone. I saw my nephrologist last Monday and hopefully wont see him again till next march.
Cratnin down to 1.16 and the only thing I can attribute it to is diet and alkaline water. Even doc is starting to take notice.when I became ill in june2009 my creatnine level was 8.7. I was doing dialysis. During my 10 day hospital stay.never needed to back after that.
I just feel very fortunate right now.....just hoping it'll continue

[pberggren1]

Good to hear your Creatinine is down to a good level now Edie. I'm curious as to what your diet is now? And how do you get alkaline water?

[Al]

Yes, Edie, please let us in on your dietary secrets! (I don't know about animal proteins riling the Wegs dog, but low protein diets do seem to be less challenging to the kidneys, which have to process most proteins. Some people insist that ultra-low protein diets delay the need for dialysis.)

Al