Are you in remission? Do you mind answering a few questions [Archive] - Wegener's Granulomatosis Disease GPA Support Forum

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.

pberggren1

06-11-2014, 02:40 AM

Glad to see you are down to 1mg of pred Marta. I hope you can get off it soon and hopefully forever.

vdub

06-11-2014, 06:34 AM

If Andrew can put an Excel spreadsheet on here
E-mail it to me and I'll put it on my site with a link. My e-m will handle attachments up to 25Mb.

ingemlb

06-11-2014, 08:56 AM

Thanks Dale, Lisa and Marta. And Marta thanks again for the spreadsheet. Must have been an incredible amount of work go into it.

Dale I think that's the case with me. Clear Wegener's symptoms for 5 years but I had this sudden dose of Neuropathy in my feet that came almost overnight and started in late 2005. It has not changed since. So if that were Wegener's it would mean symptoms going back 9 years. Then my Sinus issues were first apparent in the mid 1990's. Cough started in 2002. So if they are all due to Wegener's then it goes back a lot longer.

Five years ago the eye ulcers started, then the inflamed Ileum which caused a Crohn's diagnosis and stomach ulcers which could not be explained. Early last year the Sinus became worse and all of last year the joint inflammations which migrated all over the place. Until they went everywhere and totality crippled me and landed me in hospital in January.

One of the specialists there indicated I was in a very serious situation. She saw me writing and we were talking about something and she said well, if you had not been diagnosed you would not be writing that story now. So even though I felt absolutely dreadful I had no idea it was THAT serious. That all dawned on me after diagnosis :(

Marta is good to have a doctor you feel confident with. And it's VERY DIFFICULT to change doctors I have found. Takes ages to get to know them and for them to get to know you :( Some doctors will read officially published papers if you print them out for them. But others are too busy to research which is a pity.

Debbie C

06-11-2014, 10:36 AM

Inge, I tried to reply with Quotes like vdub did got all the answers and said my reply was too short and wouldn't enter...now I am on the next page so I'm gonna wing it.
I think I had wg long before being dxed ( maybe 8 yrs ) As soon as I moved from Fl. to Ohio I had to use a neubulizer machine and puffer to breathe ,my dr. then thought is was allergies and never tested for any thing else. Then about a year later another dr said I had an ear infection,was given antibioactis that didn't work. Went to 3 different ear drs and said I had 3 different ear infections got more antibiotics and ended up with c-diff that I thought was going to kill me. They found out I had wg literally by accident ( I got rear-ended in my car ) at the hosp they did a ct scan of my lungs and saw all the nodules and thought I had cancer.
I had to have a partial right middle lobectomy done to dxed wg.
I was put on the usual regiment of 150 mg. ctx,100 mg. pred,bactrim and vit d
The reumy at the time did not believe (even after the biopsy ) I had wg he thought I had something called "Boop" so after 6 months he took me off all meds.
My sed rate was going up so I went to Cleveland and the rheumy there put me on pred and tried all the other drugs but I could not tolerate anything.
The highest of prednisone I have ever been on is 100 mg. I have been at 5 mg. for almost 3 years. Tried to wean off but the withdrawal systems were too rough,will try again but I'm good right now.
I have blood and urine tests done montly and a ct scan done about once a year and as long as they keep coming back good they consider me in remission
Hope that answered yr guestions without too much info.

Alysia

06-12-2014, 03:19 AM

Thank you Inge for that thread and for bringing such good questions. I admire your order :thumbsup:
I am not sure if I will answer all your questions. I want to emphasize couple of things that seem critical to me, from my (bad) experience (mistakes that were done with me) and from what I am reading and learning here in the Forum.
Please, anyone, correct me if and where I might be wrong.
I think that the main "keys" for getting into remission are the following:
How fast you got dx
How fast you start treatment,
What treatment do you get: must be immune-supressive and must be strong enough.
In all those, there were big mistakes with me.

Like you, Debra, my first dx was of BOOP. Although one doc suggested WG. The hospital didn’t have free operation rooms so they didn’t do any biopsy of my lungs, although they knew that they should :thumbdn: They only did bronchoscopy and took samples during it.
Then for months I was treated only with pred, 60mg for about 5 months.
Then for couple of months – no treatment at all ! I took pred on my own. I had severe nose bleeding, crusting, ears full of fluids and infections, hear loss, and joints pains. They said that I don’t have WG because of 2 false negative nose biopsies. more ignorance and mistakes :sad:
Then after case conference about me, they decided that it is WG. finally.
But the treatment that I got was only bactrim and from time to time pred. things got worse but it took more then 3 years for my doc to start to give me something stronger. first he gave me Plaquenil (wtf ???) and after more then 1/2 year, in which nothing good happened, he finally gave me Imuran, which made me vomiting and diarrhea. then mtx for more couple of months – did nothing. More deterioration.
At that phase I found this Forum and understood how many mistakes were done with me, and insisted on getting rtx. Since rtx most wg activity is diminishing.

As for considering remission – according to my doc I am not in remission, but according to our dr. Phil, I am. So I will take Phil's word for that :thumbup:
It took couple of years to get there. because of wrong treatment.

I think that I had WG smoldering many years before the acute onset. I think that I had first onset on 17yo with strange joints inflammation and strange wounds on my skin – which their scars remain UNTILL I got the rtx. rtx CLEARED the scars from those wounds.
I think that for years I was in a free drugs remission. And then wg sneaked back with smoldering. and after that with acute onset.

last point: I think that remission is when you don't have WG activity. labs can be ok, but you CAN still be smoldering. except for c-anca and Pr3 which were postive untill rtx, all my other labs were ok, although I was def smoldering.
my sign for wg activity is the blood. nose bleeding is a red sign for me.
thanks for those who read my words untill the end of that long post.... :love:

Alysia

06-12-2014, 03:20 AM

P.S. Debra, your avatar is just gorgous :thumbsup:

annekat

06-12-2014, 03:42 AM

P.S. Debra, your avatar is just gorgous :thumbsup: I agree.... wow, what a glamour queen!

Debbie C

06-12-2014, 03:53 AM

LOL.Thx for the compliments Anne and Alysia but I wouldn't go that far !

Alysia

06-12-2014, 03:55 AM

LOL.Thx for the compliments Anne and Alysia but I wouldn't go that far !
ok. then glamour princess :wink1:

Pete

06-16-2014, 04:17 AM

1. About a month
2. I had cavitations in both lungs, and had lost a lot of the hearing in my right ear. The lungs have pretty much recovered. I got some of the hearing back, but wegs aggravated what the Army rifle range, some loud concerts, and flying an airplane without wearing a headset started.
3. Started with 150 mg/day cytoxan, 60 mg pred, bactrim ds every day. Now on 17.5 mg/wk mtx, 4 mg/day pred, bactrim 3x weekly, and 1 mg/day folic acid. Had two rtx infusions in October 2013.
4a. 60 mg/day. Initially for 18 months. Tapered off completely in June 2013. Back up to 60 mg/day in September 2013. Tapered back down to 4 mg/day now.
4b. See 4a
4c. Was off for about 4 months in June - September 2013.
4d. No adverse effects. Appetite came back under control. Pred pounds are coming off very, very slowly.
5. No
6. NA
7. NA
8. Monthly labs include CBC, Metabolic panel, sedimentation rate, C-reactive protein, urinalysis. All results are within normal range.
9. 17.5 mg/wk mtx since 10/13, 4 mg/day pred (taper from 60 began in 12/13), bactrim 3x weekly (forever, it seems), and 1 mg/day folic acid (since 7/12). I am asymptomatic and my labs are within normal ranges. Fortunately, I feel great and can do everything I need to do and most of what I want to do.

ingemlb

06-16-2014, 06:21 AM

Thanks Debra, Alysia and Pete. It's making me wondering now re the "smouldering" symptoms. I have some blood discharges from the sinus along with the scabby mucous. Usually two or three times a day. Not huge amounts, just a bit each time. But you sort of wonder where it comes from.

I stopped taking the panadol osteo (strong paracetemol) last night and woke up pain free so will see how we go. Almost 2 weeks on the 25 mg pred now and wednesday supposed to go down to 20 but will try 22.5 unless the next few days are too difficult in which case I am still considering a trip back to hospital. Blood glucose is pretty unstable too. Now I am not getting hypos but the sugar jumps way too high after dinner. So if I increase the insulin I have trouble in the mornings. If I take more insulin before dinner I would have trouble during the night as it drops down fairly fast. I am not sure with the sugar management if the temporary extreme high spikes are a problem or if all is ok as long as it drops again. The Endo in hospital told me when it gets over 15 (In Australia we use a different measurement) I was to call him however then he corrected it and said if it goes over 15 and stays there. Well it never did but lately it can spike to 22. I am supposed to keep it below 12. I found it was 22 2 hours after eating then an hour later 15 then 2 hours later down to around 11 etc. So it does go down rapidly. Both times it spiked to over 22 I had been eating pasta. Once in an Asian dish and last night we had Spaghetti. Apart from the pasta had nothing sweet, no snacks. Lunch was a simple mushroom soup. Dinner spaghetti Bolognese all home cooked so I was quite surprised to see the sugar flare up so high.

Pred withdrawal is still causing a lot of fatigue. And weakness on activity. At least I am still assuming it's pred withdrawal.

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.

Thanks everyone for participating. It makes things a lot clearer for me even though we all have different symptoms, use different drugs and have different cycles of remission it's still good to have a bit of a snapshot in one place of how we are tracking.

windchime

06-16-2014, 10:22 AM

Inge it's normal for the blood sugar to spike after a meal. From what you said it really spikes when you have a high carb dinner, but the good news is that it comes down fairly rapidly. I think this is probably a pretty normal occurrence. I don't think they would give you anything for the high after dinner spike since it's caused by the high carbs.

ingemlb

06-16-2014, 11:47 AM

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

MCC

06-17-2014, 12:57 PM

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

06-17-2014, 01:35 PM

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

06-18-2014, 12:48 PM

annekat

06-18-2014, 02:42 PM

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

06-18-2014, 05:23 PM

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

06-18-2014, 05:27 PM

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

06-18-2014, 05:38 PM

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

06-24-2014, 07:07 AM

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

06-25-2014, 01:49 PM

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!!!

aewaustin

06-25-2014, 01:53 PM

One note... I have had MAJOR peripheral neuropathy and was on Lyrica for 3 years. At the beginning of this year I decided that I had to get off it somehow, the pain was like my finger was in a light socket in the morning, my whole body buzzed, and it was going to my face. I started seeing a homeopath and she diagnosed me with heavy metal issues. I am a kid from suburbia and have had office jobs my whole life, so no clue on this. BUT she started me on supplements, not cheap by the way, but she reduced the pain by 95% and it got me off Lyrica for the first time in 3 years. Was a miracle if you ask me...

The therapy she does is NRT (Nutritional Response Testing), seems way weird, but totally worked for me.

ingemlb

06-26-2014, 06:38 AM

thank you Mike and aewastin. such different experiences. Aewastin it is interesting after one year on high dose pred you have been able to stay off it all this time. Guess it gives me some confidence that staying on it a bit longer is not going to be the end of the world.

Mike you have done it hard but I hope you still get to some kind of remission too. I can feel your frustration. Especially someone used to being very active. Hope things improve for you. Thanks for your detailed reply.

aewaustin

06-26-2014, 10:25 PM

Guys, I have had a pretty easy time (after 2 years of treatment) of getting into remission. BUT I did it the hard way. The first time I was put on CTX at a high dose, lost my hair, chemo exhaustion and all that. The second time after RTX failed I asked to do CTX at a high dose because I was sick of barely living. I was so sick I could not drive or eat much during one month of that six months of RTX. Just something to think about. I sacrificed six months of bad and losing my long hair, to get my life back. Something to think about for all of you that are suffering so much, CTX SUCKS, but man FOR ME it does the trick. And if I got really sick tomorrow I would skip RTX and go to CTX and then be done with it in a year or so, with much less hair :( Well actually if I did CTX again I would ask to do IV instead of pills and then I would wear the cold cap during chemo to try and save my hair :)

So I am not giving medical advice, and EVERYONE is different. But for me, CTX puts it in remission and I am not dealing with being in limbo. And btw when I went to Cleveland Clinic and saw Dr. Langford she did not even discuss CTX with me because she said it is so bad and is a total last resort. But because I knew what it was like in 1992-1994 and how I was drug free for 18 years, I was like screw it, give me the stuff that works.

And I am a different type of person too... I have done 2 Ironman triathlons and I do not embrace being sick, I am NOT a Weggie, I have wegeners and I beat the **** out of it, get it into remission and then move on. And I am very lucky to have a body that goes for that. Anyway... My 2 cents again :)