View Full Version : A weighty problem!

02-24-2011, 06:03 AM
Hi guys

Now the initial euphoria of at long last having a diagnosis has worn off, the bravado of 'I'll deal with the weight gain' is becoming transparent!

If I try and diet and exercise the excess away now, whilst on the cyclophoshamide and fluctuating dosage of 30 - 40mg pred, is it possible to lose it, or will I be flogging a dead horse at this stage?

Any thoughts would be welcomed . . . going back to work next week and as I work in a primary school, am feeling more than a little self conscious about my 'new look' to parents!:unsure:

02-24-2011, 06:30 AM
Hi Jules
just a note to say i to work in a primary school and went back while taking cxt and preds i think i went back to early as its not an easy job and also dont worry what other propke think about you and take care of you !
my wg consult adviced me not to go back until in drug or drug free rernission to many risk at the moment in my school they have flu d and sickness and chicenpox plus the lack of constant hygenie sp eg not washing hands and touching everywhere pencils in the mouth before they give it to you
Im not trying to frighten you but i wish i had listened to my own advice and maybe i would be further forward
Rest as much as you can at lunchtimes and breaktimes and inform all the sfaff you work with as their support can ce a bonus if your having an off day
take dare of you DEEx

02-24-2011, 06:46 AM
Thanks for that advice DEE. I'm really lucky and have a very understand headmaster - they've been great about the 4 months off I've had to take. Am going back only on a part time basis to start with - 3 mornings a week until I feel I'm ready to take on more. The constant round of 'bugs' did concern me and I have been able to give up my First Aider role to try and eliminate some of the risks.

Looking forward to regaining some normality, but also with a little trepidation. . . although I have a positive outlook on life, it's amazing how much this 'cough' (as I first thought it was!) has affected so many aspects of the norm! Jules

02-24-2011, 06:53 AM
Jules just remembered a couple of things dont forget to carry on drinking plenty because of your cxt some thing we forget to do when working in sxhools and keep hand gel in your pocket !!
people understand why prevention better than cure . I f you have any thing skse you need post or PM me DEE x

02-24-2011, 07:10 AM
Hey Jules, glad to hear you're well enough to return to work... don't overdo it!!

Like Dee mentioned -- maintain high consumption of water and limit your "Sodium" as much as possible.

Having said that.... Holly still experiences the "moon face" and protruding belly even though we've got her down to approx. 1500-2000mg/day of sodium and eliminated animal fats. All her protein comes from fish, nuts, eggs, grains and legumes. She eats a lot of veggies and fruit as well. She is now in the upper level of what they consider normal weight for a 15 year old girl at 5'6". We may have to start calorie watching to avoid further weight gain while on the high dose of prednisone. Her appetite is quite amazing considering she was always a picky eater.

Her way of coping at school was to be very open about her treatments and what they do. Her teachers/principal have also helped in educating other students on her illness.

It seems to have helped in her case but definitely a "personal" choice.

02-24-2011, 07:21 AM
Jules, I really feel your concern! Hubby and I were both in public education. Now retired, we work with kids at church and are soo conscious of stepping back from a sneeze, scrubbing hands extremely often, etc. Feel bad, but our grandkids and best friends know not to come to our home to visit if they have colds, etc. However, in the past 4 years we have learned that even more than the germs, any type of stress or exhaustion seems to make hubbie's Wegners much worse! His face gets a pale, waxy yellowish look and I know it is time for an extra nap or to scale back our activities. He was asked to go back to work again for several months, and Dr. insisted only part time. So glad you are returning slowly!!!
Weight - we struggled with that too. Learned that fresh fruits and veggies are primary diet! We now eat veggies we had never heard of nor thought we'd like - eat 5 times and we begin to like - amazing, once we decided how badly we wanted better health. Some protein and only the healthiest grains are OK. It actually works and works well, in spite of pred. Prayers to you!!!!

02-24-2011, 07:39 AM
any type of stress or exhaustion seems to make hubbie's Wegners much worse! His face gets a pale, waxy yellowish look and I know it is time for an extra nap or to scale back our activities.
Do you think this gets better in time ot something we always have to be aware of as your describtion is the way i get need to sleep no matter what :rolleyes1: DEEx

02-24-2011, 08:20 AM
I have had some luck with diet and exercise and loosing a little bit, but it has been minimal, a little under 2 lbs in 5 weeks. I am in the process of decreasing my Preds now, I'm at 50mg daily. The decrease in Preds seemed to help a little, but I think what has helped me the most is walking when I'm feeling up to it. My moon face is still in full effect, I don't expect that to go away any time soon. Everyone is different though, best of luck with whatever you decide to do.

02-24-2011, 09:44 AM
A BIG thank you everyone for your words of advice - each and every one gratefully received!

Keeping the stress levels down has been mentioned by many of my work colleagues who have been amazingly supportive. . . some have even pondered whether this could have contributed to the original onset - on auto-pilot during term time, but became ill on or before the first day of every school holiday! Not sure if anyone else has experienced this or not???

I have found in a strange way many positives have come out of this 'journey' . . . one of which is the attention to a much healthier diet and lifestyle. The supermarket even sends vouchers for fruit and veg now I buy so much!!!

Will try the walking a bit more, having two labradors gives me the perfect excuse, but just need to master the breathlessness first.

Thanks again everyone, and any more gems of wisdom are welcomed. Jules

02-24-2011, 04:06 PM
Jules, I agree with most of the above advice. I also want to add that you should take care exercising. Pred makes the ligaments and tendons tear easily. Walking is good, but don't overdo it. You can easily damage your feet and it might not heal properly.

Also, remember that your body needs its energy for healing right now. Whatever you do in terms of exercise uses some of that energy. If you keep the exercise gentle, you can enhance your healing. Go for time, not intensity or speed.

02-25-2011, 03:34 AM
Now the initial euphoria of at long last having a diagnosis has worn off, the bravado : I can associate so closely with this remark, I had to smile. Good Luck Jules with going back to work, please listen closely to your body and dont be 'afraid' to step back and rest up when you need to. I found that high pred made me feel a bit like superman and the temptation is to overdo it. My wife has just retired as a school teacher after 27 years and I know what stress and strain you are going thru. Some very interesting posts here with excellent advice. :thumbup:

02-25-2011, 04:24 AM
I think it was a little better when he was in remission for several years! If he had a very good night of sleep during remission it was easier. We even took grand kids to Disney last year. It still wasn't what it was before Wegeners, but better than now. (That ended in May and we are seeking a new drug since Cellcept no longer works and he spikes a very high fever every time he tries Immuran). Wonder if any other Weggies have comments about this? Did anyone reach a level of not experiencing the extreme exhaustion or give us help as to how to "work thru it" if you have a special event to attend? Good luck/health Dee!

02-25-2011, 04:29 AM
I schedule extra resting time before and after a special event. If I know that Saturday will be a long day somewhere, then I stay home Thursday and Friday and don't do much. I also know that I'll be unable to function much on Sunday and Monday. I haven't been able to get past the 2-day bumpers on either side of a special event day. Sometimes it's even longer to recover. Three day bumpers are tough, because it means I can only get out of the house once in 6 days.

02-25-2011, 08:36 AM
Thanks Sangye - I wasn't aware of that side effect of the pred . . . will aim to take it easy to start with! Jules