Treatments & returning to work?

[Wegetarian]

Hi Guys!

Just joined the forums. I was diagnosed very recently and am currently on sick leave. I'll probably write a small introduction in the noobies thread soon, but was hoping to get some feedback on how quickly people go back to work after being diagnosed. I understand it must vary a lot based on many factors though but given that the treatments are still a big unknown to me so maybe there are at least some general guidelines.

I'm going to see a specialist next week, which will most likely clear it up a bit for me (especially about meds). I mean I don't know yet what drugs I'll take or if they want to take some more tests. I got out of the hospital last week, and I was very lucky to get diagnosed early so only my nose should be affected so far.

At the moment I'm taking:

40mg Somac (to not hurt my stomach from pred.)
80mg of prednisolon (60 in the morning and 20 at night)
antibiotics
Calcium to prevent the pred. from hurting my bones
some natural sleeping hormones to help me get to sleep (I find pred. makes it harder for me to sleep).


Unfortunately I was in surgery in June, and was spending most of my time in bed in the summer before getting a fever and sore nose from Wegeners. So I'd have to say I'm in pretty bad physical shape but I expect a lot of it is due to almost no excersise. I also feel fatigued and can't stay up for very long times at the time even if I wouldn't be doing anything demanding. Even walking half a kilometre to the bus stop feels like a chore. The doctor I talked to said I should't go to the gym until I talked to the specialist.

I work in fairly large IT projects, and quite often there are very stressful times there which worries me a bit as I've understood stress should be avoided.

Anyways, at the moment I'm just really glad that the pred cleared up my nose as much as it did and the antibiotics I got at the hospital got rid of the fever I've had for weeks. Since I guess many of you have been in the same spot it would be great to hear some comments. Like I'm not sure if the fatigue is related to the Wegeners / prednisolon or just me being in bed and if it would be a very bad idea to go to a stressful job at this point.

[annekat]

I needed about a month and a half before I could start going back to work on a limited basis, that is, going to the farmers market where I sell pottery, be around people, unload my car, deal with the public, walk to and from the parking lot, etc. And I got very tired by the end of the day. Before I returned to the market, I was able to work on pottery at home on a limited basis, probably about 3 weeks after starting treatment for Wegs. But of course I could self-pace and rest whenever I wanted. I am so much better now after 2.5 years of treatment. Everyone is different, though. I, too, am glad they caught yours early. Your body and brain will tell you when they are ready to work again and you will be able to tell if you are overdoing it and pace yourself accordingly. Good luck, and welcome to the forum!

[Wegetarian]

Thanks annekat! Yeah, was pretty shocked when I read about Weg but immeadiately felt so relieved that they took such good care of me and diagnosed me early. I'm still so surprised they did it as quick as they did. Guess I'll go and write a short story about me in the other section. I mean reading about other user stories helps me to get a better grasp about what is happening, and helpful comments are so nice :)

I have to say that I really think my employer is great, they just told me to rest for now and get back after I hear more from the doc. We had already discussed that it could be possibility that I'd start working half-days after the operation. Quite frankly at the moment the thought of sitting at the office for 8 hours + one hour commute each way and taking the kids to school/daycare in the mornings just feels so rough even as a thought. Hopefully with half days of works it could be a possibility soon. Still kind of worried about 5 hour business work shops where I need to focus 100% and not really take any extra breakes. Still probably no use of stressing about such things yet.

[NikkiNicole]

I was only out while I went through radiation for cancer found simultaneously to the Wegener's. I work in our local county's Sheriff 911/Dispatch center, very stressful, but I try to stay going as much as I can because I know if I need to be out, I'll be out. I'm not nearly as bad off as some people but the fatigue and feeling ill is horrendous. Most days I wish I could go back out on leave and come back when I have a better handle on all of this.
It varies from person to person, it seems. You have to find what YOU can handle, and what isn't going to harm YOU in any way. I"ve had to learn not to judge my progress on someone else's because even with all of us having the same illness, it's so different to each of us!
Hang in there!

[woz]

I had my first symptoms December 2012, finally diagnosed end of March 2013, started back at work June 2013, First 4 hrs per day for 2 weeks(at the end of 4 hrs work I was very tired), then went onto 5 hrs per day for 2 weeks, then full time ever since. I work as a storeperson/truck driver, a reasonably physical job. It has taken a while for my muscles to get back to where they used to be. At the moment I am at about 85% of where my body used to be. I had lung, kidney, sinus, muscle/joint involvement. It is very hard to work out how hard you can push yourself, just take small steps ,because you don't want to go backwards. I wish I could get 10% and sit on the beach, but as Ned Kelly once said, "SUCH IS LIFE" (Famous Australian Bushranger). My advise would be, when you feel fatigued, rest straight away, until you feel good enough to do it again. You might improve quickly, or take months/years to get back to near normality, such is the nature of the WEGS beast, everybody is different.
Good luck, and read all the threads on this web site, it helped me immensely.
Regards Woz.

[Wegetarian]

Thanks Nikki and woz!


My advise would be, when you feel fatigued, rest straight away, until you feel good enough to do it again.

I think that sounds like really solid advice. I can pretty much feel when I need to go to bed for a rest. At the moment I would so much rather go for a swim or do something active. Even though I'm not really a sporty person, just spent way too much time in the bedroom (unfortunately alone :(). I've really enjoyed reading threads from here. Its especially interesting to hear how it effects people, it just seems to hit everyone in a unique way and having very little idea of what my future holds for me I at least know what other are going through or have experienced.

Nikki, how does the stress from your job affect the disease? I mean personally I think answering 911-calls would be really high on my stress chart, it doesn't sound like its something I could do if I wasn't 100% present nor could I take a coffee break during a tension filled call. Do you notice if the stress affecting the illness a lot? At least a doc told me to avoid all stress for now.

Guess I have an ulterior motive, since I so miss my hobby which some people say is a very stressful past time. Decided to not do anything stressing before I talk to the doc about starting treatments.

I think I still have difficulties in estimating how much I can do. Like I went to my employer to take some documents from my sick leave and to have a friendly chat. Even though it was a very nice visit and only spent a few hours there I just felt I needed to go to rest as soon as I got home. Not being able to sleep properly is probably not that great for me either.

[drz]

One caveat to try remember is the high dosage of pred will create delusions of adequacy so you need to be careful and watch for this. I often thought I could do more than I actually could really handle and if I waited till I felt exhausted or tired, it was too late to recover with out a prolonged period of rest. It is better to be careful and err on side of being too cautious.

Some of us never work again and some Weggies return to jobs of very demanding physical labor or do other prodigious feats like climbing mountains or marathon bike trips. Hope you are lucky to join this group too.

[annekat]

One caveat to try remember is the high dosage of pred will create delusions of adequacy so you need to be careful and watch for this. I often thought I could do more than I actually could really handle and if I waited till I felt exhausted tired, it was too late to recover with out a prolonged period of rest. It is better to be careful and err on side of being too cautious.

Some of us never work again and some Weggies return to very jobs of demanding physical labor or do other prodigious feats like climbing mountains or marathon bike trips. Hope you are lucky to join this group too. I agree with that, drz, though I hadn't thought of the part about the pred making us think we can do more..... but yes, it is very easy to think we are fully up to something, based on how we feel at the time, and then pay for it later with extreme fatigue and needing to rest. It is hard to keep up with what others are doing, for example, if family is visiting from out of town and everyone is having fun, we may need to excuse ourselves to go rest at some point. It is just something to keep in mind and allow for on a daily basis.

[Debbie C]

Hi wegetarian ! So the only thing you are really taking for this right now is pred ? Does the dr. plan on putting you on something else ? As for your question about work, I am out on disability and collect social security. I had a job where I was around the public constantly and with my immune system being low ,one of my drs. wrote a note saying I could not work for a least a year and I haven't neen back since.And that's been 3 years now (gosh ..time flies and I haven't really been having that much fun ! ) Also being tired is a way of life,especially at first, all I wanted to do is sleep but I'm pretty much back to normal as far as that goes. It takes time but you will feel better,with the right drs.and meds. Good luck !!

[Wegetarian]

Thanks again for the helpful comments! Especially good to know drz that pred makes us feel stronger than we are. I mean I had felt the exact opposite, like I have now maybe a third of the energy that I had at the start of the summer. Before the Pred I couldn't get out of bed though, so while I'm really grateful to have the energy I do have I'll take your advice and try to rest more. I've noticed how some chores which seem so minimal to me can drain all my energy. Like I spent a day fixing up my parents new computer and setting everything and was so beat after that. A few months ago I'm sure it wouldn't have affected me at all. Part of the reason might also be that I only slept less than 4 hours that night (damn preds).

Debra, yeah - only preds for now. Well some antibiotics and stuff to help offset the pred. I just received the info on the biopsy last week and have my first time with a specialist later this week at which time I guess we'll know more about the meds.

I actually wrote a much longer introduction about me, but for some reason I can only see the thread if I'm logged in. Here is a direct link, but if I paste it into another browser I just get a message about invalid thread even though I can read it fine otherwise. I guess I need to inform the admin about that.
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3245-hello-europe.html

[chrisTIn@]

Hey Wegetarian! Welcome here. The link to your thread 'Hello from Europe' doesn't work indeed. What European country are you from?

[Wegetarian]

Just a quick update that I'll most likely start Methotrexate treatments tomorrow and stay away from work the next few months. I guess I'll need to take it from there. I do consider asking whether it would be a good thing to start part time, but since I'll be at home for quite a while I guess I'll bring it up a bit later with my employer.

chrisTIn@, thanks. I created a new thread and it should work fine now. Its a bit long though :)
http://www.wegeners-granulomatosis.com/forum/new-member-introductions/3253-hello-europe.html

[MCC]

it really is different for everyone. I had three weeks off work whilst I was in and out of hospital with the doctors trying to work out what was wrong with me. I felt so terrible. I had to fill in a quality of life document once and I rated it as 1/5 at that time.

They then discovered it was wegeners and I started treatment the same day (cyclophosomide). That was a Friday and I went back to work full time the following Thursday. At first the drugs made me feel worse because they had the amounts slightly wrong. Then I woke up one day a few days later and it was like a miracle, I felt completely well...more than a 5/5 (I guess from the prednisone :) ). I had terrible pain in my knees and that was gone completely.

I have not been off sick since. I even fitted the IV cyclo every three weeks around work. I would just go to the hospital for 4 hours from 8am and then be in work by the afternoon!

But i just have an office job, I guess if your job is more physical it would be harder. And I was only 29 when I was diagnosed. Even though I was actually very sick I recovered quickly and it definitely was not a problem working.

[pberggren1]

How old are you now MCC?

[MCC]

33 soon. It's coming up to 4 years diagnosed, 2 years off medication.

[NikkiNicole]

I wonder if I should be at work as my dose of MTX gets higher. I work in a dispatch center with no windows that open so it's just recirculated air. We share desks, phones, chairs, etc. I wipe everything down with my own antibacterial wipes that I bring in with me and I use Purell Hand Sanitizer all the time. I had asked my doc if I should get a note from her to have a desk that I sit at and stay at the whole time but she didn't think it would be an issue.
I'm very clean, always wiping and sanitizing. It's still in the back of my mind though every time someone comes in with a nasty cold or flu because they "don't want to burn their sick time". We are lucky enough to have sick time. USE IT so that you don't force me to use mine!!!!!!

[pberggren1]

I certainly understand your concern, fears and frustration Nicole. This is a real issue for sure. But I have to agree with your doc. You already take the necessary measures with cleanliness. That is key hun. You do a good job. And if someone is around you with a cold that is in close proximity, just wear a mask. I would not stay away from work for fear of getting a cold or infection. I'm sure you will do just fine the way you are.

[NikkiNicole]

I don't need to miss work. I just had thought for awhile that I should designate a desk as my own, and have it be my own little germ free zone. But, I am trying not to make waves at all. I'm trying to make this smooth for everyone else as well.

[pberggren1]

Ah, I see now. Good idea about your own desk. If you make waves so be it. Your health comes first. Your employer should realize this.

[Debbie C]

Nikki, I would ask for your own small desk,surely the office is big enough and your supervisor knows your condition. I can see that lady you were talking about before really rolling here eyes over that !!! I know whan I was is the waiting room of my eye dr. the other day,there was a lady hacking like crazy and sneezing her head off and reading a magazine. When she was called back she just threw the book back on the stack for the nexxt person to get our her germs. People can be so stupid and inconsiderate. Everyone was looking at her ...like cover your mouth idiot !!

[NikkiNicole]

How it works is we have radio positions and phone positions. And, then ... we all change places halfway through the shift, splitting our days between radio and phones. So, I clean one desk and then clean another desk, etc. We have a few extra that aren't being used all the time that I could totally use if I needed to. My doc was on board with writing a note for me to have my own desk.
It's just been such an uncomfortable situation as it is with some of my co-workers. I'd hate for Eyeball Roller to get her eye stuck because she's rolling them left and right about me and my own desk.

[MCC]

How it works is we have radio positions and phone positions. And, then ... we all change places halfway through the shift, splitting our days between radio and phones. So, I clean one desk and then clean another desk, etc. We have a few extra that aren't being used all the time that I could totally use if I needed to. My doc was on board with writing a note for me to have my own desk.
It's just been such an uncomfortable situation as it is with some of my co-workers. I'd hate for Eyeball Roller to get her eye stuck because she's rolling them left and right about me and my own desk.

Didnt you say your doctor said you didnt need your own desk? If your doctor doesnt think it's a problem I wouldnt worry. It is all too easy to get paranoid....this is basically what my doctor said to me, avoid people with colds where possible but dont be too concerned about it.

[Wegetarian]

Thanks for sharing MCC! :)

Strangely I don't feel that much better since I came from the hospital. I still get tired so easily. Not sure what's the reason, I mean I had an operation in June and was in bed for the most of the time until I got in the hospital for Wegs so I never really felt I got my energy back. The doc did say I should start getting my energy back when the MTX starts to effect me. She mentioned a month and I took my second dosage yesterday so maybe a few more weeks before I see effects.

I am worried about the flu season though, here in Scandinavia it gets really cold and my small kids pick up a lot of flu's and usually I get them too. We did discuss that we'd talk with out neighbors that they'd warn us if their kids are sick so we don't invite them to our home (our send our kids to theirs) when they are ill. Like they say in Game of Thrones: Winter is coming.

NikkiNicole, can you ask to get one of the not-so-nice desks? I mean if you ask for the best desk people might be annoyed that one person gets special treatment but if its one that isn't usually even used is someone really gonna mind if your boss tells them its to help you avoid infections? Besides having your own desk is great :D Maybe you can improvise a bit with the Weg paraphernalia and bring a huge hand sanitizer bottle on the desk and other stuff that would be awkward to keep moving twice a day, its not like they know what you need anyway.

[NikkiNicole]

So far, I've got a system down. I come to the desk, move everything off the surface, wipe it down and then start putting the mice and keyboards back. (We have 3 mice, a keyboard, a phone keyboard, and a handset) I have my own wipes and hand sanitizer. I'm gonna keep trying the way things are.
I did move desks the other day when my calltaking partner was hacking up a lung. She thought I just didn't want to sit by her. I just went to my spot. Everyone knows, I've made it clear. I need to get healthy, not go the other way.
If things get worse, I'll get one of the desks in the back. The supervisors already told me they would make any accomodations I needed. It helps that I've been here 12 years and am a darn good employee who doesn't use my sick time unless it is needed. (Which is good because I blew through it when all this started to go down and with the cancer!)

[Wegetarian]

Wait, you use a public keyboard? I loathed to use one even before I got sick. I think it might be well worth it to get your own mouse and keyboard. I doubt your wipes do all that much to help if the keyboard is more germ ridden than a toilet seat. Not to mention I never see the office cleaning personnel clean the keyboards, maybe they might wipe the monitors but never the other stuff. Although it probably won't help that much to spread the germs with a moist cloth anyway...

"It had 150 times the recommended limit for bacteria - five times as filthy as a lavatory seat tested at the same time, the research found."
http://news.bbc.co.uk/2/hi/7377002.stm

[mishb]

Wait, you use a public keyboard? I loathed to use one even before I got sick. I think it might be well worth it to get your own mouse and keyboard. I doubt your wipes do all that much to help if the keyboard is more germ ridden than a toilet seat. Not to mention I never see the office cleaning personnel clean the keyboards, maybe they might wipe the monitors but never the other stuff. Although it probably won't help that much to spread the germs with a moist cloth anyway...

"It had 150 times the recommended limit for bacteria - five times as filthy as a lavatory seat tested at the same time, the research found."
http://news.bbc.co.uk/2/hi/7377002.stm


I totally agree.
It's not much of an effort to unplug the keyboard and mouse and plug your own in.
Even before I got sick, it grossed me out using someone else's computer and/or phone.

I have had about 6 sick days off since being WG attacked 4 years ago. I think working in an office is a better way to go