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

[ingemlb]

Thanks Cindy. That's a relief Just when I saw the 22 I went into panic mode lol

[MCC]

1. How long do you think you had Wegener's before you were diagnosed. Difficult to say, I was very ill for maybe 3 months but I guess I actually had it much longer.
2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible? I had a large mass in one kidney (about 5-6 cm) and spidery masses over my lungs. they were granulomas that completely rectified themselves. No long term damage.
3. Which main drug/s was/were used to treat the Wegeners Lots! Cyclophosamide IV, prednisone, Aza and all the usual ones to combat the symptoms of those.
4. If you were given Prednisolone:
a) What was the highest does and how long were you on it. 60mg. not sure.
b) How long before you started tapering within a couple of weeks.
c) Did you manage to stay off Prednisolone. Yes, for 2.5 years. Much to my upset I am now out of remission.
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup? Nope. i never had the problems other people had.
5. Are you in "drug-free" remission? I was in drug induced remission within 3 weeks of diagnosis. On drugs for 2 years. Off all drugs for 2.5 years and only 2 weeks ago have I had to start pred and aza again.
6. What was the indicator that started to wean you off Immunosuppressive drugs? not sure. I guess stabilised for a long time?
7. How long after start of treatment did you reach "drug free" remission. 2 years.
8. What sort of tests are you now doing to determine you are still in remission. I was having blood tests every 3 months. then they started creeping up slightly, so doc ordered blood tests every 2 weeks which shows its back
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"?

Just like to point out that from the above it probably sounds like I had an easy ride compared to some people, but my doctor told me that the wegeners was particularly bad in me - it was moving very quickly. I think long term damage was only prevented by a relatively quick diagnosis (it took 3 weeks of being in and out of hospital).

I'm very upset i have had to go back to taking drugs again, but at least its low doses. I'd love to know how many people manage to NEVER go back on medication? It seems to me now that is almost impossible and that it will always return after a period of time. Love to be wrong though! (I still feel the key is finding out WHY we get wegeners. Just dealing with the symptoms cannot work forever).

[ingemlb]

Thanks for your feedback MCC. You are probably right that you were very lucky for a quick diagnosis and that the situation reversed itself. I don't think it is possible at present to be CURED of Wegener's. Hence we go into "remission" which seems to be different for many. Some are in remission but still on drugs. Some are drug free and the interval between flares seems also unpredictable. Its just a nasty disease all round and despite the toxicity of the drugs without them we would be history

[MCC]

thank you. How long have you been diagnosed for, and do you have damage you are concerned about?

I definitely am one of the lucky ones in that having wegeners has not affected my life a great deal. People talk about a 'new normal' but I still have 'normal'. I found that within days of taking medication I felt very well, I still work full time and go about my life pretty much the same as before. So this disease, and any issues with medication, is down to the individual it seems.

[annekat]

As to when Wegener's started I reckon the pattern seems to be that a lot of people have symptoms for quite a few years before it becomes nasty and leads to a diagnosis. Hence the statements that in the past people died within 6 months of getting the disease (before immunosuppressive drugs were available) is probably not quite right. It was probably more likely 6 months from when Wegener's became critical, obvious and led to a diagnosis.

This sounds like a very good way of putting it. How else would many of us still be alive having had WG for several years before dx? When I was dx'ed was only after things got very bad in my lungs, and without medical treatment, I'm pretty sure I couldn't have lasted more than maybe 4 months, if that. As for your continued sinus stuff and scabby mucus, that is pretty typical, as it takes longer to clear up the sinus issues, if ever. A lot of damage can done to the sinuses along the way, which may be more problematical for some than others. As for blood in the mucus, as long as there is scabbiness or crustiness in there, it seems to me there can be blood, as the scabs and crusts will poke into the nasal membrane and cause bleeding. Otherwise, blood may be interpreted as a sign of increased disease activity, especially if it appears after having not done so for awhile.

[ingemlb]

Thanks Anne. Interesting re the blood. In my case it's only a tiny amount at the moment but some every day and probably only the last 2 months. Not sure what to make of it.

I am still confused as to what is causing my symptoms. flare or pred withdrawal. Not too many here seem to get very ill trying to withdraw from the pred so I don't know what to think. I am putting my faith into the fact that the last two blood tests apparently show all is well. Back on pain meds. The Pandol Osteo for now. Yesterday had a really lousy day today a bit better with the meds. Still very puzzled

[ingemlb]

thank you. How long have you been diagnosed for, and do you have damage you are concerned about?

I definitely am one of the lucky ones in that having wegeners has not affected my life a great deal. People talk about a 'new normal' but I still have 'normal'. I found that within days of taking medication I felt very well, I still work full time and go about my life pretty much the same as before. So this disease, and any issues with medication, is down to the individual it seems.

Hi Mcc. I was diagnosed early Feb this year. My damage is in the sinus, stomach and bowel. Peripheral Neuropathy. The rest is all non-specific inflammation all over the place but mostly under control by the meds.

I can't say I am as lucky as you. Wegener's has definitely cramped my style and practically disabled me. I do a bit of housework and cooking but it is very unpleasant

I felt reasonably good for a short period after leaving hospital but since then its been one roller coaster ride.

[annekat]

It does seem a little unusual for pred withdrawal to be that problematic, although I know it can be for a few days after you lower the dose, or if you taper too fast. It could cause a flare, maybe just a mild one, but enough to make you feel pretty fatigued. In my case I flared mildly this winter after being on the lower dose for a couple of weeks; I'd gone from 10mg. to 7.5mg. So I went up to 20 and am now at 15. The previous year, I flared because I was on too low a dose of MTX, and was raised from 10mg to 15 mg per week, where I still am. In that case, the flare took a couple of months to develop and may have been spurred by a moderate cold. I guess maybe it happens differently for different people. I guess your doc would be who to ask about the blood in nose. At least your bloodwork looks good; that should count for a lot. Mine has been improving since this winter's flare but have yet to find out any current results. Best of luck in getting over that sick and fatigued feeling. It's understandable that you are somewhat puzzled.

[jmmilliorn]

1. How long do you think you had Wegener's before you were diagnosed. I was very sick for about 5 months prior to my diagnosis ( back in 2010), but I suspect that the onset might have been even earlier. I had noticed that I was not able to work all day on the ranch anymore, and I had increasingly severe sinus problems.
2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible?
Like many others, we went from doctor to doctor getting treatment for various symptoms without uncovering the real cause for the problems. I saw many types of doctors for each succeeding malady--heart, legs, head, even an oncologist when it was thought I might have leukemia. I had lost 40 lbs very rapidly and was quite anemic. The oncologist confirmed what we were beginning to guess--it was some kind of auto immune disease. One doctor thought vasculitis, but didn't know what kind or what to do. My wife researched it all online and suggested Cleveland Clinic. They saw me the very next day. We flew from TX to Cleveland overnite and had an 8:00AM appt. with Alexandra Villa Forte. I was unable to walk and very, very ill. My wife wheeled me into the CC. By 10 AM I was diagnosed with WG and had a treatment plan. I did not suffer any irreversible damage to organs other than a few granulomas in my lungs.
3. Which main drug/s was/were used to treat the Wegeners Lots!
I took all the main drugs plus Pred, but I was allergic to some and very sick on the others the whole time I was taking them. When it became available in 2011, I began taking twice yearly infusions of Rixutimab which seemed to do the most good. Four years now with WG, I quit taking the Cellcept I was on in Jan. because it had so many side effects for me. Apparently the Rituximab is doing a good enough job of suppressing my immune system that I no longer need the Cellcept.
4. If you were given Prednisolone:
a) What was the highest does and how long were you on it. 60mg. not sure. I was started at 60mg/day and tapered pretty quickly. I don't remember how fast. I'm still on it.
b) How long before you started tapering About 2 weeks? Don't remember for sure.
c) Did you manage to stay off Prednisolone. I've never been able to get off it.
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup? I've tapered down many times to around 12mg and had a flare up. Currently I am at 9/mg per day but can't go lower due to a bad sinus infection.
5. Are you in "drug-free" remission? Never been in remission. I am considered "smoldering" and will probably always take at least a small dose of Pred.
6. What was the indicator that started to wean you off Immunosuppressive drugs? Still taking RTX. My doctor took me off the others due to my intolerance of them and in hopes that my immune system could fight the sinus infections better with just the RTX.
7. How long after start of treatment did you reach "drug free" remission.Still haven't.
8. What sort of tests are you now doing to determine you are still in remissionN/A
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-- Don't think I will ever get into remission, but I still hope I do. I feel better than I did a year ago, but I am very SOB, weak and unable to work on our ranch anymore. I can do a few things if I take it easy and don't try to do too much in one day. Walking is limited, climbing out completely. The biggest problem is I don't feel like doing anything due to all the sinus problems that continue making me feel lousy most days. I only feel good for those few hours when a Hydrocodone tablet is available. I've gained a ton of weight on the pred and can't lose it since I can't taper low enough or feel well enough to walk or exercise. I gave into the Pred every time it said to eat. I often ate just to be able to sleep for a few hours or just to feel better for awhile.

[aewaustin]

So I have had two episodes eighteen years apart, so will try to answer the best as I can for the two


1. How long do you think you had Wegener's before you were diagnosed.
3 weeks, I had a huge flare with sores all over my legs, it was pretty obvious and a dermatologist diagnosed me the first time, the second time it was less clear, but we knew based on the previous diagnosis.
2. By the time you were diagnosed how much damage had the disease done. Was any of it reversible?
Was losing kidney function by the day, but when I started cytoxan that reversed
3. Which main drug/s was/were used to treat the Wegeners
Prednisone/Cytoxan (6 months at high dose) has worked for me both times. The second time I tried RTX but it just could not hold it back.
4. If you were given Prednisolone:
a) What was the highest does and how long were you on it.
60 mg/for months
b) How long before you started tapering
a year or so
c) Did you manage to stay off Prednisolone
Definitely!!! for 18 years
d) was withdrawal difficult for you? i.e. did you have a lot of withdrawal symptoms vs disease flareup?
Nope
5. Are you in "drug-free" remission?
Will be in December Doc wanted me on Imuran for 3 years. The first go round I was only on drugs for 2 years total.
6. What was the indicator that started to wean you off Immunosuppressive drugs?
Not sure of the question... But I am always trying to get off the meds
7. How long after start of treatment did you reach "drug free" remission.
2 years the first time, this time will be 4 years.
8. What sort of tests are you now doing to determine you are still in remission.
Blood in my urinalysis is the only marker of my disease so that is the only thing we can use. I never show positive for ANCA or Sed
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"?
18 years free of drugs baby, it was awesome and will be there soon!!!