[bogey]

Hello all -- after doing really well for the past 2 years, on low dose prednisone and plaquinel, now have protein in my urine. Kidney biopsy says its focal proliferative nephritis, and need to begin immunosuppresion therapy.

The treatment will be Cellcept and oral Prednisone. I think the prednisone for the first 4 weeks will be 80mg per day, then slowly tapered afterwards.

I am very concerned about the large prednisone dose.

Can anyone tell me (roughly) when to expect to look like a beached whale with a big moon face after starting the prednisone?? Is there a time frame that I could use to schedule my hectic work schedule without looking like a beached whale and a time frame that I will probably be unrecognizable ? Will it take a couple of weeks before this transformation occurs? And will I be tempermental right away ? Are there any strategies to avoid gaining 50 pounds from the prednisone or is that pretty much unavoidable ? Am I going to want to crawl under a rock from the treatment side effects or will I be able to function full steam ahead???

Thanks for your advice -- Bogey.

 

[sam101360]

Hi! I am on Plaquenil 200mg 2X, CellCept 500mg 2X and Prendisone 5mg. The combination seems to really work right now! I do have occasional breakthroughs of flu-like symptoms, pain and fatigue, but not too often.

I have only mild nauseau from the CellCept, I found that I MUST take the AM dose on an empty stomach and only have tea or hot cocoa within 1/2 hour. The PM dose I have to take at least 1 hour before food. This regime keeps the nauseau under reasonable control.

Everyone is different and you need to find your own routine.

I cannot answer the question about the steroids as the highest dose I was on was 40mg and that was only for 10 days, I dropped by 10mg every 10 days, then down to 5 where I seem to have to stay, as when I came off I went into a major flare that impacted my kidneys...Thanks goodness I was still on the CellCept as the effects were mild and caught very quickly.

I am sure someone will come along with advise on the prendisone issue.

Stephanie

 

[raggedyann1]

Bogey,

I know it is hard to face the idea of the visible side effects from Prednisone. Your doctor wouldn;t be putting you on such a high dose if your nephritis wasn't a major concern. Prednisone is the drug we love and hate. It will literally save your life. Try and focus on the good the medication is doing you. I know that is easy to say but it really helps me to focus my thoughts on the benefits of whatever treatment I am on at the time.

You are likely to get chipmunk cheeks and also some "weight" gain in the abdominal area. The degree of the side effects changes from person to person. I get facial hair growth instantly with Prednisone and yet others don't. It is very hard not to gain weight on Prednisone. However it can be done. The trick is to have low calorie snacks around. If you like celery, carrots and apples those are great low calorie snacks. The other thing is to drink a large glass of water 20 minutes before your meals, that will help you feel full and eat less. Be prepared to be up at midnight cleaning your house. If you have major problems sleeping call your doctor and ask for something to help you sleep.

I have to be honest this disease has taken my looks. I gave up on make-up right out of the gate because it wasn't worth the pain in my hands to put it on. I could easily apply make-up now but I am used to not wearing it. I am on the sicker end of the disease process.

Let us know how you get on.

Take care,
Karen

 

[Clare.T]

Hello Bogey

I am sorry things have so suddenly taken this dramatic turn for the worse and I hope they will soon get the kidney disease under control.
About continuing "full steam ahead ", if that still includes a 60 hour a week work load I would have thought it is rather unlikely.
We all have to take things a bit easier to help our bodies fight the disease
I don't know about men but I have heard that about a third of those on Prednisone do not put on weight, some question of metabolism. If you do feel very energetic you risk grossly overdoing it and making things even worse

Wishing you the best of luck
Clare

 

[bogey]

Thanks for the info -- I had the prednisone dose wrong - it will only be 60mg/day for the first 4 weeks -- still a huge amount but at least sounds a little better than 80. Not sure how I will manage the 60 hour work schedule, hoping it will be manageable though.

 

[Lupusdude]

Wait gain?

Hi Bogey,

You seem to be on a similar med pattern as I am. Was on low dose pred and plaq for many years. Had a biopsy done after they found a bit of protein in the kidneys. Went on the Cellcept 500mg bid and it cured the protien in the kidneys. Cut back to 500mg once a day and things were looking good for a long time. Had a bit of a flare recently (playing around all hours of the night will do that for ya :lol: ) and took a pred burst which cured that flare. Now back to just Cellcept and plaq. Woohoo!! It does get better. I would do the Clare thing and think about what the heck that job is doing to you. Sounds like torture to me. Hope things work out.

Blessings, Joe

 

[mysharonna]

Hi Bogey,

With all that you have going on right now medically going "full steam ahead" and a 60 hour work week does not sound like the best course of action!

I know it is hard to slow down and admit that we sometimes have to take it easy...but doing so will help your body heal...your job will always be there, but if you don't put your health first it really wont matter!

I hope this new treatment works well for you. Best of luck.
Sharon

 

[samour]

Hi there,

I would say slow down as well. My daughter only takes 2 classes Gr. 12 as trying to do 6 this year would have taken its tol. Sarah was on 60 mg. for months, also have 4 /1000 mg infusions of methlprednisone. It took awhile but she did get the chubby cheeks, some facial hair, acne, that hyper feeling, and some abdominal fat, but she acutually lost weight, not really the norm.

She was also on 7 infusions of cyclophosamide, side effects nausea and fatigue. She lost her hair, not the norm, they think she was very sensitive.

I think everyone is different, but most of the syptoms are very typical, expecially the prednisone. I was on it as well several times. My doctors watch me for bone problems regularly. It also helps to get something for sleep on the high doses.

Hope all goes well as can be expected

Sharon

 

[Raglet]

don't know if this is a possibility for you - but I need more than 40mg of prednisone, I just have infusions of solumedrol instead (3-5 days, 1000 per stage).

It's not the weight gain that is the problem, just the hyped up feeling of high doses of pred really get to me if I have to stay on them for a while.

But, I have cns lupus, not kidney problems, so this may not be an option for you.

Cellcept has an excellent reputation for kidney's - seems to be as good as cytoxan, and certainly a lot less hassel.

good luck with your treatment

raglet

 

[clairebear!!]

hey hey

i'm on pred and cell cept too for my kidneys, i have class 4/5 nephritis when i was 1st dx, i was put on 60mg of pred..and i was WIDE awake all the time, nothing seemed to tire me out AT ALL, but the good news is that i didnt put any weight at all on my body..all i got was a huge moon face and i hated it!

i'm not sure if it was just with me, but cellcept can make you lose weight so being on pred and cell cept kind of balanced out with me i think, as i didnt put any weight on..only my face looked like i did, but the scales didnt show it..not that im complaining!! :wink2:

the moonface didnt really appear when i had the IV steriods it was when i started on oral steroids and the moon face came pretty quickly..i'd say within a week it was huge...but its only going to be 4 weeks that your on that much pred, but it does help and it will get alot better! i've been on pred for 6 months now but im now down to 5mg a day...the moon face will be worth it in the end if they help you..!!

good luck and take care! :thumbs:

Claire x

ixiedust:

 

[bogey]

started new meds

Hello again -- just started the new meds -- prednisone 60mg/day and Cellcept 1g/day. Hope everything goes OK. Thank you. Bogey.

 

[lauralee77]

Bogey,
I am currently on 50 mg/prednisone (just dropped from 60!) and just started Cellcept last week. I am now taking 1000mg/twice a day. I've noticed I'm extremely fatigued today after doubling my dosage. The reason I started Cellcept is for kidney inflammation and high fevers that won't go away for 3 months. I've been in the hospital twice in the past two months.
Yes, I have the BIG moonface, but the rest of my body is skinny as I have lost quite a bit of weight during this flare. I've just learned not to be vain about my looks. I'm shocked when I look at wedding pics and how I looked and then look at myself now. I don't even put on makeup these days because it requires too much energy! Sometimes strangers are blunt and say that they notice I am probably on prednisone because of my face and I get tremors in my hands or they can tell something is wrong with me, but I try not to let it bother me. It's just part of my life and I have been dealt these cards and what can I do?
I will say with taking the high dosage of prednisone and immunosuppressant lowering my WBC, I am out of work right now. Please just be careful not to overdo it. The prednisone will give you lots of energy, but your body still needs to recover and rest. Keep us updated!

 

[mysharonna]

Hi Bogey,

Just wanted to wish you luck with your new meds. Hoping this new cocktail will work wonders and have you feeling well again.

Try and rest as much as you can...although with your work schedule that will be hard!

Sharon

 

[bogey]

Thanks

Thank you for the kind words -- Bogey.