side effects & questions

**michael99** · 01-02-2010, 12:06 PM

Hello Board - i am 3.5 months into my pred/cytoxan treatment and i am starting to really feel the side effects of these drugs (some headaches, weight gain, excessive sweating with light physical activity, sleeping problems, increased blood pressure, etc..) the good news is the meds are working great in arresting this disease. i ma now on 15mg of pred, when does the weight gain stop?? i was fortunate to have been diagnosed early so the disease has not done significant damage to my body (but enough to make me go to the emergency room to be diagnosed -very luck i had the right doctors). i have been reading the messages on this site for 4 months and realize now you guys have more answers about this disease than most.

have any of you gooten sick (common cold) why on the meds?? did you take anything for the cold?

do any of you have an idea of why or how you got this disease??

**pberggren1** · 01-02-2010, 12:21 PM

I had a lung infection in June and Sinusitis in October. Where are you from?

**Sangye** · 01-02-2010, 12:59 PM

Hi Michael,
Welcome to the group! I'm sorry to hear you had to do the ctx and pred, but glad it seems to be working for you so quickly. (I'm sure 3.5 months doesn't feel like "quickly" but it is. Some people have spent a year on ctx!)

The weight gain with pred is inevitable. What dose did you start at? That seems to make a big difference in how much you gain, and how long you continue to gain even once the dosage is lowered.

I've had pneumonia while on meds and had to be hospitalized for IV antibiotics. I'm pretty obsessive about hand sanitizers and avoiding crowds, so I don't really get colds.

**Terri** · 01-02-2010, 01:36 PM

Hi Michael and welcome,
I went back to work 8 months after being diagnosed ;at an elementary school of all places and I have only had a slight cold in a year but I am on Bactrim 3x a week. I don't know if that helps or not.
My hands are so cracked and dry because I constantly wash them and when the kids come around me coughing or sneezing, I politely ask them to cover their mouths.
You just have to be careful.
I'm glad to hear the meds are working for you.

**elephant** · 01-02-2010, 01:52 PM

Hi Micheal, you have to be careful with cold medicine because it can interact with the other medicines. With your high blood pressure, taking over counter medicines increases your blood pressure more. Always ask your doctor what you can take. The best thing to do is rest, drink fluids, and if your symptoms get worse ( short of breath, coughing more than usual, high fever) call your physician. Glad you are feeling better. I myself have been on high dose of prednisone and had the same side effects except I didn't gain too much weight. I have three family members who also were on long term prednisone starting with high doses and didn't gain much weight. It must be our metabolism or something.

**michael99** · 01-03-2010, 12:06 PM

Sangye - i started out at 60mg of pred and now down to 15mg per day and will be at 10mg very soon. the lab work (blood and urine) are showing very good results to date but not yet full remission. the doctor believes that since we caught the disease very early, the meds appear to be doing there thing. my wegs is in my hip and kidneys. being DX with this disease and being told if you do not have treatment, you literally have months to live is an eye opener. the kidneys are such a vital organ and nothing to mess with. on one hand, i fell lucky the disease attacked a vital organ first so as not to cause too much damage to my body, but on the other hand, i have to deal with the fact that it attacked a vital organ and the stakes are high from the get go. the doctors tell you about the 50% of the people who are treated and the disease stays in remission for a very long time. what is this boards experience with effective remission and the %?? i have a little one that needs me around for a long time!!!

**Sangye** · 01-03-2010, 02:30 PM

My Wegs doc recently surprised me by saying that serious lung involvement is much worse than kidney. The reason is that even with kidney failure you can go on dialysis and get a transplant. Terrible, but survivable. There's nothing to be done with extensive lung damage. He used this info to convince me of the necessity to go back on pred for this current flare.

As far as the percentages for remission, the JHU website says, "Using the combination of cyclophosphamide and prednisone, more than 90% of patients with severe disease respond to treatment, and 75% are able to achieve disease remissions. Unfortunately, Wegener’s is a disease in which relapses frequently occur. Approximately half of all patients who achieve disease remissions eventually suffer recurrences ("flares")."

I don't know if that 90% is still accurate. I do know that the treatment options have improved dramatically just in the past year. Your quick response to treatment bodes well for you. Get a Wegs specialist, follow his/her recommendations, and you'll be giving yourself the best chance possible to live a very long time.

**Jack** · 01-03-2010, 10:42 PM

Originally Posted by Sangye

The reason is that even with kidney failure you can go on dialysis and get a transplant. Terrible, but survivable. There's nothing to be done with extensive lung damage.

Just to clear up any possible misapprehensions -

I survived 18 months of dialysis, but I was unwell for much of the time and getting worse. I'm not sure how much longer I could have survived.

Transplants are hard to come by, especially if you are in certain ethnic groups. Hundreds die before they get the chance of a transplant and they don't always work.

Patients with lung involvement can use oxygen to some extent and then there is always the possibility of a lung transplant.

I've got no axe to grind here as I have both kidney and lung involvement.