PDA

View Full Version : side effects & questions



michael99
01-02-2010, 11:06 AM
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, 11:21 AM
I had a lung infection in June and Sinusitis in October. Where are you from?

Sangye
01-02-2010, 11:59 AM
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, 12:36 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, 12:52 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, 11:06 AM
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, 01:30 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, 09:42 PM
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. ;)

elephant
01-03-2010, 09:52 PM
Jack, same here. I have a question for you. Were you only on cyclosporine and prednisone for the kidney transplant and wegeners disease?

Jack
01-03-2010, 10:04 PM
Yes. As luck would have it, both conditions need similar medication.

elephant
01-03-2010, 10:12 PM
So how many years were you on cyclosporine before you flared? How long have you been on Cellcept and were you always on 1500mg a day of cellcept?

Jack
01-03-2010, 11:46 PM
I don't keep a record, but roughly speaking, I was on cyclosporin for around eight years and had flares to some extent throughout that time. I probably had to return to using cyclophosphamide on about three occasions and was back to taking azathioprine or increased steroids on several more. This was all nearly 25 years ago so treatment of Wegener's was in its early days.

I suppose I started to use Cellcept around 1995, but can't remember the dose. The version of the drug I now take is called Myfortic and I take 720 mg/day which is quite a low dose, but I still don't flare. I can't get below 10mg of pred without trouble though. :(

michael99
01-04-2010, 01:12 AM
jack - has the disease always been "around" (not in full remission) for your entire adult life?? have you heard of Imuran? i believe that is what they want to put me on next after the cytoxan.

pberggren1
01-04-2010, 01:14 AM
I believe that Imuran and Azathioprine are the same thing.

Sangye
01-04-2010, 01:50 AM
Okay, let me clear up what I meant by the lung/kidney comment.

Kidney involvement is obviously a major problem, for all the reasons you listed, Jack. Obviously it can be life-threatening, and rapidly so.

Lung involvement is of 2 types : granulomas (nodules) or alveolar hemorrhage (bleeding). If the lung involvement is alveolar hemorrhage, there's no possibility of a lung transplant. That situation is acute, critical and often unstoppable. I've never heard of a Weggie having a lung transplant for any reason. I don't think they're even that common in the general population.

My Wegs doc said, "if you lose the lungs to Wegs you lose the patient." When he said that, my lungs were hemorrhaging-- not just nodules. If they continue to hemorrhage, you can give all the oxygen in the world or put the patient on a ventilator, etc.. and that person will die.

Jack
01-04-2010, 02:29 AM
Yes Sangye, I take your point. :)

It was early in the day for me when I read your earlier post and my mind interpreted it as "loosing your kidneys is no big deal!" I know you would never suggest a thing like that.

I was 30 when first affected by Wegener's. Before that I hardly had a day's illness, not even flu (perhaps my immune system was too good?). I then went through a rough time, first with the disease being misdiagnosed and then the flare ups during the early years. After my transplant, and when I was not flaring, I felt very well, but recently the drug side effects have started to catch up with me. I still have no symptoms I could associate with Wegener's although there is always the suspicion at the back of my mind.

elephant
01-04-2010, 03:13 AM
Jack that is very encouraging for my situation. I am hoping in 16 months getting rid of the cyclosporine and staying on cellcept for life. So I really need to talk with my Weg spec about getting a kidney doctor who specializes in weg/transplant and I am guessing there has to be one at the Cleveland Clinic in Ohio. I have a feeling that I won't get off prednisone either especially with the lung and sinus involvement ( that was also the Weg spec, ENT and pulm thoughts too). Thanks again Jack for answering my questions.

Sangye
01-04-2010, 07:42 AM
I could have explained it better! I've been pretty foggy lately-- moreso than usual. :)

elephant
01-04-2010, 08:57 AM
Sangye you do great explaining things, you always mean well. Hope the fog clears out real soon for your sake. Are you feeling ok?

Sangye
01-04-2010, 02:24 PM
That's so sweet-- thank you. The fog is a usual thing for me, just worse some days than others. I'm having a hard time with this new forum appearance-- it's way bright and hurts my eyes. The font is also hard to read at times. So it uses up more energy than normal to read it.

pberggren1
01-04-2010, 05:59 PM
I hear you Sangye. I am having a hard time adjusting to the new appearance as well. I too find it much brighter and the font hard to read.

I'm not sure if my lungs had just granulomas or were hemorrhaging as well at first onset when I was diagnosed in April of 2003. I was definitely coughing up blood and bloody mucus. The x-rays of my chest looked quite cloudy and looked cloudy again on the relapses I have had since. Any insight on this would be appreciated.

I know what you mean about the fog as well. I find that somedays it takes me 4 to 6 hours after I get up to be totally coherent.

elephant
01-05-2010, 12:52 AM
Some days I feel spacey ( foggy). Like I can stare at the TV and space out and have no idea what was said on tv. I have done this many times ( it is quite relaxing) staring at the tv and I ask my husband a thousand questions. " What did that guy say?" My hubby looks at me and says aren't we watching the same thing???

Sangye
01-05-2010, 02:01 AM
Elephant-- very funny! The other day I was on the phone asking about how to apply for a program. The woman told me, "Go to the website, print out the application and then mail it in." I listened and made appropriate sounds indicating I understood. I said, "Okay, so do I submit the application online or do I have to print it out and mail it?" I KNEW she had just told me clearly what to do, but it was totally gone from my memory. LOL-- what must she have thought....

Sangye
01-05-2010, 02:07 AM
I'm not sure if my lungs had just granulomas or were hemorrhaging as well at first onset when I was diagnosed in April of 2003. I was definitely coughing up blood and bloody mucus. The x-rays of my chest looked quite cloudy and looked cloudy again on the relapses I have had since. Any insight on this would be appreciated.

The CT report will say "infiltrates" or "ground glass opacities" if it's hemorrhage. If it's nodules, it will indicate "nodules" with a measurement and location for each one.

pberggren1
01-05-2010, 02:08 AM
Thanks Sangye

Sangye
01-05-2010, 02:13 AM
Michael,
YES on the insomnia thing. I've always been a good sleeper--out when my head hit the pillow, slept soundly and barely moved all night. When the first symptoms began (severe, intermittent joint pain), I also got terrible insomnia. I'd be tired as usual, but my body just wouldn't go "off." I also had an intense need to keep changing position, move, kind of like writhing. I literally would lay on one side and not be able to count to 3 before I HAD to flip to the other side. This continued even when the joint pain would go away temporarily.

It's a 100% indicator for me of active Wegs. I can tell when treatment is working by how easily and solidly I sleep.

pberggren1
01-05-2010, 04:45 AM
I know what you mean Sangye. I would go through periods where I would toss and turn all night and my body would not turn off.