Are you in remission? Do you mind answering a few questions

**ingemlb** · 06-10-2014, 06:23 AM

Not sure if such a thread already exists here but maybe if it does a) someone could post a link to it or it would in any case be good to repeat it.
I was wondering if all those in remission could answer a few questions or post their journey to remission story. Being new to all this I would like to understand how long it all takes and what to expect and how to recognise remission. So here goes.

1. How long do you think you had Wegener's before you were diagnosed.
2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible?
3. Which main drug/s was/were used to treat the Wegeners
4. If you were given Prednisolone:
a) What was the highest does and how long were you on it.
b) How long before you started tapering
c) Did you manage to stay off Prednisolone
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup?
5. Are you in "drug-free" remission?
6. What was the indicator that started to wean you off Immunosuppressive drugs?
7. How long after start of treatment did you reach "drug free" remission.
8. What sort of tests are you now doing to determine you are still in remission.
9. If you are in remission but still taking drugs what are you taking, how much, how long and what determines that you would still call that "remission"?

Would be interested to hear from as many as possible as this information I am sure would be of great interest to all those of us recently diagnosed. If you know of someone in remission not likely to read this thread but can contact them to do so would be great

Thanks all.

**vdub** · 06-10-2014, 03:06 PM

1. How long do you think you had Wegener's before you were diagnosed.

Typical diagnosis is 24 months. I was about 18 months.

2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible?

Moderate sinus damage, minor lung damage, major brain (pituitary) damage. Nothing reversible.

3. Which main drug/s was/were used to treat the Wegeners

MTX 25mg weekly, prednisone just 10mg (very light) Still on both but smaller doses 20mg MTX and 5mg pred
I also had a number of what I would call "taper packs" of pre-packaged pred in measured tapered dose that ranged from 30mg for a few days then taper off. The whole thing takes a couple weeks I believe.

4. If you were given Prednisolone:
a) What was the highest does and how long were you on it.
b) How long before you started tapering
c) Did you manage to stay off Prednisolone
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup?

Still on pred, but the other questions don't really apply to me, since my pituitary is gone and I need replacement steroids continuously (adrenal cortex effectively dead).

5. Are you in "drug-free" remission?

Will never be drug-free. Even the wegs drugs will be with me for a lifetime. I will always be on mtx and pred to some extent. At least, I don't anticipate ever being off them.

6. What was the indicator that started to wean you off Immunosuppressive drugs?

N/A

7. How long after start of treatment did you reach "drug free" remission.

N/A

8. What sort of tests are you now doing to determine you are still in remission.

Blood tests (CMP, ESR, CRP, etc) done every two months or more frequent at my discreation.

9. If you are in remission but still taking drugs what are you taking, how much, how long and what determines that you would still call that "remission"?

As mentioned above; mtx 20mg/wk and pred 5mg/day. Blood work and how I feel pretty much determines remission. No sinus problems is also a good indicator for me, but I have so much other stuff wrong that it is diffucult to seperate wegs from PA and GH.

**pberggren1** · 06-10-2014, 05:04 PM

1. I had Wegs about 7 weeks before being diagnosed.

2. By the time I was diagnosed I was almost dead and major damage to lungs and nose and sinuses and ears. Some of it was reversible and some was not.

3. CTX and Pred were the main drugs the first 8 years then we switched to RTX. I currently take RTX every 6 months and also 100mg of Imuran daily as maintenance. I have used Cellcept and MTX in the past as well for maintenance.

4. a) The highest dose I was ever on orally for pred was 60mg and I think I was on it for 4 months once.

b) Most times when I was on the high dose of pred I would start to taper after 2 or 3 months. Now I taper after 2 or 3 weeks.

c) I was off pred a few times. The longest time was from middle of 2005 to winter of 2007. I just got off pred again a couple months ago after being on it for over 6 years straight.

d) I never had any difficulty ever getting off of pred, never any withdrawl or flareup type symptoms.

5. No, I am in remission but not drug free. I take RTX every 6 months and 100mg of Imuran daily.

6. The time that I was drug free I also decided I didn't need doctors and could just quit my meds and go merrily on my way.....oh, how wrong I was.

7. The first time it was about 8 months to reach a drug free remission.

8. I do CBC, CRP, ESR, creatinine, ANCA and some others.

9. I take RTX every 6 months and daily take 100mg of Imuran. I am in remission because I do not exhibit any symptoms of active disease not do my lab numbers reflect that.

**ingemlb** · 06-10-2014, 07:46 PM

Thank you so much Vdub and Phil. I am starting to see some picture emerge and it is obviously different for everyone. When I was first diagnosed and told about MTX and Pred and whatever I was told it would take 6 months to tell if the drugs were helping, i.e. only after getting off the pred. So I mistakenly assumed that in 6 months I would be in remission. Guess that was rather naive of me.

It is strange Phil that you had no pred withdrawal symptoms. From what I have studied on the internet Pred withdrawal is very common. I guess I am still a bit nervous if my current symptoms are due to withdrawal or flareup. i am simply trusting the blood tests. They show no active disease which is why we are tapering the pred.

The sinus' seem to be a problem for most people with this illness. Mine seemed to get better for a while when I started bactrim but that didn't last long

**ingemlb** · 06-10-2014, 07:55 PM

Vdub I just read your link in your signature. I feel very sorry that you have such a terrible bad luck to have the 3 diseases. I have a friend who has Psoriatic Arthritis so I know how painful that can be. She has been doing very well on Humira but not sure how long before the side effects make that dangerous to continue on.

Sounds extremely scary what you have been through. Thank you for taking the time to reply to my questions. I better stop wingeing about having to take the few drugs i take compared to some of you who have been hit so much harder with this.

**renidrag** · 06-10-2014, 10:22 PM

1. I think it is possible I had differing symptoms of WG as along as five years.

2. Lung involvement in both lungs, irreversible, along with non related COPD. I also was the recipient of a good dose of neuropathy in legs and feet.

3.Standard, Cytoxan, Prednisone, Bactrim and Ameprozole along with Vitamin D and Calcium supplements.

4. Yes
a) 80 mgs at beginning for about two weeks I think.
b) At the two week period I went down to 60 mgs. My taper was pretty fast compared to most, Pred free February 2010. Diagnosed August 2009
c) Yes
d) I only recall being happy about not taking it any more. I don't recall side effects going off. I do recall side effects of taking the drug.
5. Yes for WG.

6. Doctor asked me how I felt and compared blood tests, mainly CRP, SED, and Creatniinine and said let's see what happens. Nothing did.

7. Ten months

8. Blood tests every six months and keeping a critical eye on myself. Again CRP, SED, and Creatninine are so important to know inflammation levels.

9. I am no longer on any AI drugs. I do take Coumadin for a blood clot back in December 2009. That experience also gave me a filter in my vena cava. I also remain on Supplements.

With all this being said, I still have terrible neuropathy. SOB from COPD, daily fatigue and battle with weight gain from WG. All is not perfect I guess that is what I want to say. I will never work again nor do I think I will ever play golf with DD. But I am in a better place than I was six years ago.
Dale

**LisaT** · 06-10-2014, 11:58 PM

Thanks for starting this thread and asking the questions, Inge, It will be very useful to know (and possibly to tell my doc... The drugs he has me on seem to be everyone's maintenance drugs but he's not bringing in the big (expensive) guns. Thanks to all of you who have answered too. For us relative newbies, it is a wealth of information...

**marta** · 06-11-2014, 02:36 AM

Hey Inge, here's my stuff, but I have 1000 others if you're interested (similar but different questions.) See after my answers for more info on that.

1. How long do you think you had Wegener's before you were diagnosed. 5months
2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible? I was close to death, but it all came back in a limited way, except for my hearing. The lungs got wolloped, my kidneys got a bit of a kick, sinuses haven't been the same but are a thousand times better than when I was in the thick of it. Joints still hurt, I still have pains, aches, shortness of breath, lack of conditioning, eyes are way worse, headaches but mild. It depends on the day, but I am in drug induced remission.
3. Which main drug/s was/were used to treat the Wegeners CTX, RTX, Imuran, pred of course, Dapsone (allergic to Bactrim) and a bunch of others at the start to mitigate the negative side effects of the others ... oh yeah also blood thinners in the early days.
4. If you were given Prednisolone:
a) What was the highest does and how long were you on it. 60mg to start, 1000mg Solumedrol (equals 1500mg pred) daily for three days for my flare.
b) How long before you started tapering: Started tapering after about a month and was down to 17mg within 6 months but then got a flu shot and was flaring within days and in hospital in a week and started all over again, and it's been much much slower since. I'm now at 1mg, so I've been on pred for just over 4 years.
c) Did you manage to stay off Prednisolone. Haven't been off it yet.
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup? Withdrawal was difficult for me. Not the first time, but the second time. The most difficult was between 8mg and 5mg... apparently that is when the withdrawal gets critical and pushes our adrenal glands into action again. I was about to go back to work, and I felt almost as bad as onset. It sucked.
5. Are you in "drug-free" remission? Nope, and according to my doc, if I want to keep her as my doctor, I will not go drug free. I pushed back once and she said I can get another doc. I love her and trust her completely and am not close to making an argument for myself. She believes that the literature proves that a drug free remission is not sustainable long term.
6. What was the indicator that started to wean you off Immunosuppressive drugs? Not applicable.
7. How long after start of treatment did you reach "drug free" remission. Not a clue.
8. What sort of tests are you now doing to determine you are still in remission. How I feel and blood tests.
9. If you are in remission but still taking drugs what are you taking, how much, how long and what determines that you would still call that "remission"? Immuran 150mg, Dapsone 50mg (and still on 1mg of pred)

I have the survey I did with a few of these question on it and about 1000 Weggie answers. That's a huge number of Weggies. If Andrew can put an Excel spreadsheet on here, I would be happy to share it. My doc used it for a poster for a Rheumatology Journal and is writing a paper based on all our answers to publish this fall. It's probably the biggest collection of Weggie answers. I wish I would have thought it through a little better at the start. I put it together when I was in the hospital with a flare and couldn't sleep because of the Solumedrol. I put the questions together when I used it for free so only had 10 questions to ask. If you send me your email (by PM) I can send you the results if you like. It's quite interesting.