Your personal experiences in treatment?

[cawcawcaw]

Hello,

I am curious as to how everyones experiences were when diagnosed and how long it took to be in remission from a flare.
Were you able to work part/full time when receiving treatment? Do the side effects of treatment hinder you?
I know everyone is different and its very personal the reactions.
Ive recently been diagnosed and applying for full time work and scared I will end up locked out of the industry if I cant work.

E.

[andrew]

Hi hi
Interesting questions.

I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

Hope that helps!

[Pete]

I was retired nine months when GPA hit me. My first symptoms appeared in mid-December, and I went downhill pretty quickly thereafter. I doubt that I could have done my job (desk work with a lot of meetings throughout the community) for at least two months. I was hospitalized for a week (diagnosed on the 5th day) after about a month of symptoms, but didn’t start feeling better for another week after I was released.

My doctor suggested that I use good hand hygiene and avoid sick people. Avoiding sick people was easy as a retiree, but would have been very difficult in my last job.

[cawcawcaw]

I was retired nine months when GPA hit me. My first symptoms appeared in mid-December, and I went downhill pretty quickly thereafter. I doubt that I could have done my job (desk work with a lot of meetings throughout the community) for at least two months. I was hospitalized for a week (diagnosed on the 5th day) after about a month of symptoms, but didn’t start feeling better for another week after I was released.
My doctor suggested that I use good hand hygiene and avoid sick people. Avoiding sick people was easy as a retiree, but would have been very difficult in my last job.

Sorry to hear what was meant to be a relaxing time for you was fraught with all of that!

I will have to accept my limits and just see how I am day to day once its more under control.
If I get a job it would be in London, and commuting on the bus or underground, which makes avoiding sick people hard.

E

[cawcawcaw]

Hi hi
Interesting questions.

I was originally diagnosed in March of 2003. It took until about 2008 or 9 to be in a chemically induced remission and a couple of years after that to be off all immunosuppressants and in 'full time' remission - just taking drugs for all the crap the disease caused haha. I was working full time from August 2003 while still going through IV infusions of methotrexate and sometime Cytoxan. I would get these scheduled on a Friday once per month so I could take the weekend to recover. It still took several days to feel totally ok but the worst was over by the Monday. The treatment definitely slowed me down but not to the point of a full stop. I would run out of steam fairly quickly but I had a desk job so that wasn't too much of an issue. I didn't have any trouble doing my job plus I had a great employer.

The situation that you are in is one of those times where you need to put yourself first. Don't get yourself into something that's going to drain you constantly. I don't know what industry you're in but have you thought of changing industries? I've done that twice now - for different reasons than the WG - and have a whole new set of skills that I never thought I'd have. But, if you know your industry well then perhaps you'll know which jobs are going to be more of a challenge than others depending on what meds you're on. Might be a bit difficult to come to a decision having just been diagnosed but maybe kick off with a less challenging job? Ideally too, the side effects of the treatment will dissipate as the medications reduce over time (in a perfect world) so consider that you may not be on the same drugs all the time. Once other thing would be to talk to your WG specialist and get his/her advice. They'll also have a really good grip on side effects from whatever doses you may be put on.

Hope that helps!

Hey Andrew,

Thats good to hear you could arrange the schedule to once a month on a Friday.

I am a designer and have been doing internships and even when employed as a junior I will be expected to work pretty hard (which is fine).
But just long days and working late and no time off is expected, I can't really afford to be sickly when there are 100 other people ready to take my place?
I interned for the past 2 weeks, 8am-7pm then did not get home till 9pm from travel then up at 5am to go in and my health has been so bad Ive fainted and slept so much at weekend from fatigue.

I had an interview last week, will hear back Mon/Tues and I am actually scared it will be a yes? I don't feel very able to work right now and I'm not even on any treatment yet.
I don't want to start somewhere then have to give up due to sickness but I am aware your health is your wealth and breaking yourself for someone else is not worth it.

Will discuss with my Dr's when I actually see them, and talk about side effects and then it really is a game of waiting to see how I personally react. I could be fine ha.

You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?

Thank you x

[andrew]

You say you were technically active in GPA 2003-2009, I am assuming you felt a lot better rather quickly when being treated, so were not fatigued/sickly during most of that time?

Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly :) I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.

[cawcawcaw]

Exactly yes. During treatment I felt oh so much better but had to keep in mind that I was actually sick and pushing myself would only end up hurting pretty quickly :) I learned my limits pretty quickly and have been able to successfully hold down permanent work since then including running my own businesses for a few years.

Ah, thats very good to hear :)
I guess I just need to try and be patient with myself - no point pushing myself (even if I do feel better) and making more healing for myself.
Just anxious that I have been working towards full time work and suddenly might have to change my path for a little bit.

[andrew]

suddenly might have to change my path for a little bit.

That'll probably happen a lot :) It makes you more resilient :)

[Pete]

cawcawcaw

The good news is that I found an excellent wegs doc about 18 months in. She got me into a long-term remission, so retirement has become pretty much what I hoped it would be. I’m involved in my grandkids lives, playing some bad golf, and doing a bit of traveling including 3+ weeks in Europe in 2016...

[gilders]

Cawcawcaw, it's going to be very difficult to assess how quickly you personally will be able to return to a somewhat normal work routine based on other's experiences (but still worthwhile asking).
Just before I was diagnosed, but already an inpatient my parents were told that I would not be coming home (i.e. I was going to die in hospital). In other words, things were about as severe as they could get. I had multiple organs involved, including kidneys that needed dialysis.
Once I started treatment, I managed to return to work, part-time after about 8 months. I think it took about 3-4 months to get back to full time work, but my job at the time was fairly physical.

Therefore your recovery will depend on MANY things - your age/health before Wegener's became active, how long it took for diagnosis and the amount of damage already caused, which organs are effected, a certain amount of luck (have you managed to avoid severe infections whilst being immuno-suppressed?), how physical (or stressful) is your job, etc.

The good news is that even though I suffered some permanent damage, I did return to full time work and in some aspects I became fitter than before I had my first dealings with Wegener's - mostly because I made a conscious effort to get fit.

I have a lot of sympathy for you. I had missed out on some good careers due to my health (we often have to fill in health questionnaires in the UK when getting to the final stages of job interviews). There is also benefits for people who can't work (my current situation), but during the period where you are trying your hardest to work, but can only manage a few hours, there's no help. The system encourages people to give up work and exaggerate their illness as they can't afford to only work part-time and benefit money often pays more than part-time work. I was 17 at the time so although money was tight whilst working part-time, I still lived with my parents, so could still survive.

[John S]

Prior to diagnosis, I was unable to work. Luckily, I was qualified for Medicare and Social Security. I was going in and out of the hospital every other week as the Physicians treated symptoms but not the disease. I was convinced that I would not survive long and re-wrote my will, arranged for my wife to get a new, safer car and made a deal for my business to be taken over by a phenomenal employee.
Once I had a confirmed diagnosis, I responded quickly to Rituxin treatment. It's taken two years of treatments to get me feeling well enough to help out part time at my old company.

[cawcawcaw]

Ah. I just feel a bit in denial about my diagnosis - I am only 23 and surely "I can't be sick like that" ya know. I feel like I've stuff to do, vital time to try and break into industry and get my grunt work done now and all that. I just am finding it really hard to accept things might have to be different?



Therefore your recovery will depend on MANY things - your age/health before Wegener's became active, how long it took for diagnosis and the amount of damage already caused, which organs are effected, a certain amount of luck (have you managed to avoid severe infections whilst being immuno-suppressed?), how physical (or stressful) is your job, etc.

I have a lot of sympathy for you. I had missed out on some good careers due to my health (we often have to fill in health questionnaires in the UK when getting to the final stages of job interviews).

There is also benefits for people who can't work (my current situation), but during the period where you are trying your hardest to work, but can only manage a few hours, there's no help. The system encourages people to give up work and exaggerate their illness as they can't afford to only work part-time and benefit money often pays more than part-time work. I was 17 at the time so although money was tight whilst working part-time, I still lived with my parents, so could still survive.

I am UK based, and been getting to first and second stage interviews and not gotten to filling out a health form yet. Did not realise that might screw me over.

I currently get PIP for connective tissue disease but am looking to work in design (within publishing ideally).



Prior to diagnosis, I was unable to work. Luckily, I was qualified for Medicare and Social Security. I was going in and out of the hospital every other week as the Physicians treated symptoms but not the disease. I was convinced that I would not survive long and re-wrote my will, arranged for my wife to get a new, safer car and made a deal for my business to be taken over by a phenomenal employee.
Once I had a confirmed diagnosis, I responded quickly to Rituxin treatment. It's taken two years of treatments to get me feeling well enough to help out part time at my old company.

I am really glad the Rituxin worked so quickly and effectively, from will writing to slowly back into normal life again x

[drz]

i had symptoms of GPA (Wegs) for two or three years before I finally got a diagnosis and appropriate treatment. By then my health was so poor I felt unable to work so chose full retirement. Shortly after becoming retired, the Wegs hit me hard so I spent most the year in hospitals and nursing home working on recovery and learning to live with the serious damages caused by Wegs. From date of diagnosis to a drug-induced remission from active Wegs was over a year but it took longer to regain enough energy and health to resume a limited level of independent function in a light assisted living facility. If I was not retired I would be be considered disabled for regular work.

[drz]

One thing to be aware during early treatment of GPA is the effect high dosages of Prednisone can have on your feelings. I often referred to these periods of feeling a lot of energy which gave rise to delusions of adequacy. It is easy to forget your limited energy when high on Pred. Then I would try over do things and usually crash and burn feeling totally exhausted and wore out from doing too much. Learning to husband your energy is crucial part of learning to manage GPA. The "spoon theory" is a great analogy to help you understand this if you are not familiar with it. I think a search for it on here would bring it up.

[cawcawcaw]

One thing to be aware during early treatment of GPA is the effect high dosages of Prednisone can have on your feelings. I often referred to these periods of feeling a lot of energy which gave rise to delusions of adequacy. It is easy to forget your limited energy when high on Pred. Then I would try over do things and usually crash and burn feeling totally exhausted and wore out from doing too much. Learning to husband your energy is crucial part of learning to manage GPA. The "spoon theory" is a great analogy to help you understand this if you are not familiar with it. I think a search for it on here would bring it up.

I recently got severe depression from birth control, cerazette, and I am worried I might be prone to the mood effects of drugs - such as what I have heard from Prednisone.
So a bit concerned on that front but I will tell my friends to keep an eye out for things like that in me as they can see it better.

I have chronic illness anyway, and am quite familiar with dreaded spoon depletion ha. I am bad for over working myself as well, as it is right now - and I think I need to change my approach to things.

[ballma02]

Cytoxan, Rituxan, Rituxan and the usual prednisone thing. Never missed a day of work. I was nearly deaf before being dignosed. I communicated with pen and paper. Straight from infusion lab to work across the hall. Three sick days in thirty years with the same company. I've been a bike rider all my adult life. That has made all the difference. I bike through the winters in Florida these days. I am convinced serious exercise has saved my life. My two cents worth.

[Eileen ann]

Hi,
I am new and recently joined to learn as much as possible since my 15 year old daughter was diagnosed on March 6, 2019. Quite frankly it seems as if I need the help to support her as we go through this long journey.
Emma started with "sinus infections" , frequent bloody noses and now bilateral pulmonary nodules which went on for 2-3 months until her diagnosis. She Is on MTX weekly, prednisone taper and she received 2 Rituximab infusions. She seems to be doing OK but unsure of a few things and wanted some clarity if possible.
The steroid taper, I notice after the decrease she experiences a couple nose bleeds, headache and fatigue joint discomfort which starts 4-5 days after prednisone is decreased and typically lasts 2-3 days. These were part of her presenting symptoms. Is this normal? Also, this weekend it seems like she has a head cold-sore throat and cough. I will keep watching her if it worsens but am nervous. How does one tell if it's a flare or steroid taper? Thank you for any insight, Eileen

[Pete]

Eileen ann

Sorry to learn your daughter is afflicted with this disease. A couple questions: What was her original dose of prednisone? How much is she taking now? How much MTX is she taking?

Some thoughts: The prednisone taper may be too rapid. I had roaming joint pains when I first tried to taper off. If her rituximab infusions were toward the end of March, the drug may not be fully effective yet. Sometimes it takes several weeks to a couple months to get going.

How much experience treating GPA/Wegener's does the doctor treating your daughter have? My rule of thumb is that if s/he is only treating a few patients, a more experienced doc is needed. You can go to the Vasculitis Foundation's website to find a vasculitis specialist that is (hopefully) reasonably close to you. I live near Columbus, Ohio, but travel to Cleveland Clinic to see my vasculitis doc. That's a 2:30 drive one-way for me.

The Vasculitis Foundation also has additional resources that you may find useful that more fully describe symptoms, treatments, and side effects. Also, there are many people on this forum who are more than willing to share their knowledge and experiences. Feel free to ask.

Last note for now: Good news: Your daughter, with proper care, can return to a fairly normal lifestyle. I'm 72 and have been dealing with GPA since early 2011. It was pretty rough going for the first 2-3 months after disease onset and then again when I had my first major flare about a year later. I tapered off prednisone last June. I get an annual dose of 1 gram of rituximab, and I take bactrim 3X weekly. I lead a lifestyle that's very similar to what I had before GPA/Wegener's set in.

[drz]

Slower tapers down on Pred have less return of residual GPA symptoms. I went down by 1/4 mg every week or two and had minimal difficulty with return of GPA symptoms and they usually went away in a week or two so then I waited a few days before doing next reduction. Many people can do it faster and choose to toughen out the GPA symptoms til they go away. These symptoms from a taper down should get better in a few days. If not, then one might have reached the lowest level of pred one needs to keep GPA under control. Some times one has to try the taper down more than once to be successful. Some people can get off pred altogether. Other people might need 5 or 10 mg maintenance to control the GPA. Being med free is very nice but it does increase the risk of serious flare so many people stay on a maintenance dosage for a long time. The choice of side effects from maintenance drugs versus risk of serious flare is very individual choice and varies greatly just like the symptoms of GPA.

[Eileen ann]

Hi Pete,
You give me hope....Thank you!
Emma's initial dose of Prednisone started on March 6th was 20 mg twice a day and she is now on 22.5 mg daily.
She takes 25 mg of MTX weekly.
Her Rituxin infusions were March 19th and April 3, 2019.
I think you are right about the steroid taper, it was too fast. We have slowed down and decrease by 2.5 mg every 2 weeks and she seems to tolerate this.
The physician she sees is in NYC but we are considering switching to someone off the Vasculitis website. We live in CT.
I have read about the bactrim and that some take it. Is that used to decrease the potential of flares or decrease risk of PCP?
Can anyone tell me what labs are necessary and how frequently they should be drawn?
Thank you,
Eileen

[Pete]

Eileen ann

It looks like your daughter’s meds are pretty standard. I started at 60 mg of pred daily, but dosage may be related to weight (I forget). When the dosage gets below 10 mg, the taper may have to go even slower. When I got below 5 mg on my last taper, I dropped 0.5 mg/month.

Bactrim is usually given as prophylaxis for PCP pneumonia. I’ve had no known side effects from it, and it’s cheap.

When I was first diagnosed, I had weekly labs. As my condition has been stable for several years, I’ve been able to reduce the frequency to every other month. My doctor gave a standing order to the lab so I can get labs more frequently if symptoms reappear.

The labs I get are CBC, comprehensive metabolic panel, C-reactive protein, sedimentation rate, and urinalysis with microscopy.