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Bloom
08-03-2015, 12:54 AM
I know it takes some peops a long time to acheive remission, but I'm not sure what's counted as remission. I started treatment in December 2014 (having had a wedge resection of my lung in November 2013), firstly prednisolone and some six weeks after IV cyclophosphamide. My main symptoms were pulmonary, breathlessness, nodules and some bigger lesions, two were needle biopsied and one was removed by wedge resection. I also had frequent haemoptysis. I did have a very sore nose, mouth ulcers and earache and sore feet with numbness at times. I didn't necessarily connect all those as I was frequently told they didn't know what was wrong with me. The biopsy of my lung showed granulomatosis tissue and necrotic tissue. In the words of one guy from the local vasculitis team, bits of it looked like Wegener's and bits of it didn't! However I can see from a presentation that someone posted recently this is a common finding in Wegener's, so maybe he should have known that!

I finished the 6th dose of cyclo in early June. I managed to get down to 10mgs of pred. I see the team this coming week, however, since early July I have been having more haemoptysis, headaches and just generally feeling not so good. My nose is always runny. I don't feel nearly so ill as I did before I started treatment, so that's positive. I was told by a Dr to increase the pred to 20mgs, I telephoned him about my increasing haemoptysis.

The team I am under now are great but their specialism is pulmonary. The reason you have to wait apparently is so that they can assess how treatment has worked. I haven't seen anybody since my last cyclo. The only investigation I have booked is a lung function test after I see the Dr!

I really want to get off steroids because I have osteoporosis and I can't have Reclast because my Vit D levels are too low, apparently it won't work if this is the case. I am on Vit D but I have a parathyroid adenoma and my calcium levels are on the high side. The endocrinologist I see said it would have to be removed if they can't treat me because of it. The adenoma also contributes to my osteoporosis. The surgeons don't want to remove the adenoma because of my Wegener's. I can't bring myself to increase my pred to 20mgs again so I mostly take 12.5mgs or at a push 15mgs.

I am hoping someone can tell me what to expect and what I should ask them. A lot of the time I coast along quite happily in denial and tend to push myself physically probably because of this. On cyclo days I would come home and take the dog out for a walk!

Lastly, could I be considered in remission if I am still coughing up fresh blood? I would be grateful for any advice.

Bloom

drz
08-03-2015, 01:16 AM
I
Lastly, could I be considered in remission if I am still coughing up fresh blood? I would be grateful for any advice.

Bloom

Short answer--NO. remission varies according to the doctor you see. Generally it means your symptoms are under control and no new or additional treatment is required or warranted at this time. It may be drug controlled remission if you are still on maintenance drugs or drug free remission if you are off all drugs. Lab results would generally be stable and usually back in normal limits and not suggestive of active disease or symptoms. How you feel is also an important aspect in assessing remission!

Good luck in getting there soon.

Bloom
08-03-2015, 02:20 AM
Thanks drz!

Dirty Don
08-03-2015, 02:34 AM
Hi Bloom, if you're still coughing up fresh blood, then you're in need of more drugs...most likely you should up that dose of pred for starters. You may be a strong candidate for RTX also if it fits with your other conditions. Be proactive & carry on!

Bloom
08-03-2015, 04:55 AM
Thanks Don, I'm going to ask what my options are this time. I am so grateful that I'm getting treatment that I tend to just accept things.

annekat
08-04-2015, 03:13 AM
Bloom, after 4.5 years of treatment I really feel like I'm in remission. I've said that before but this time I feel it much more. There is almost nothing coming out of my nose and I cough very little any more. But no doc has called it remission yet, nor have I really asked.... and the fact is that if I am in remission, it is a medically controlled one, as mentioned above, since I'm still on 15mg. of MTX/wk, 12mg. of prednisone daily, and Bactrim DS 3X week. I've been struggling with the pred taper and feel that if I were to cut back significantly or go off of my meds, I'd most certainly have a flare. So the term 'remission' is somewhat subjective. Actual drug-free remission seems fairly uncommon, but has occurred with some forum members. As for the coughing up blood, I'd certainly agree with Don and drz! Probably you need more time for things to resolve, and yes, possibly a change in treatment. Best of luck to you in beating this thing!

Geoff
08-04-2015, 04:26 AM
Hi Bloom,

I was initialy diagnosed in April 2008 and like a lot of people here have ridden the roller coaster that goes with this illness; however this last February i was shocked to be told that i was in a "stable remission"!! Yippeeeee!

Prior to that i had been on a 2 year Retuximab infussion regime which seems to have done the trick for me. I have now tapered my pred to the crazy dose of 3.5mg, real unchartered territory for me. I have retired from work, in fact i did that when i was about to start with RTX. I figured that after trying everything else in the way of treatment, this was my last role of the dice and i had to give it every chance. Removing stress from my life has undoubtably helped me.

I go back to Clinic at the end of this month and am wondering what they are going to tell me??

As for yourself, well hang on in there, read across this Forum and try and place your illness into a context. Compare your treatment and symptoms to others and above all, especially in the early days, keep a diary of how you feel and what symptoms you are displaying.

I hope you have a medical team that are experienced with WG, if not then find one!

Bloom
08-04-2015, 06:48 AM
Thanks Annekat, I'm really appreciative both for the advice and the encouragement. I'm probably just expecting things to happen too quickly.
Also I think on days when you don't feel too good and people say "you look well" (I think that's the pred, giving me a ruddy complexion and swelling my face ��). I think maybe a lot of this is psychological so I make myself do even more!

Bloom
08-04-2015, 06:55 AM
Hi Geoff, thanks for your helpful reply. I am glad you found Rituximab worked, congratulations on achieving remission! I live in the UK too and wondered how often they prescribe Rituximab here. My sister has RA and says they only prescribe it if two treatments regimes have failed.

Bloom
08-04-2015, 07:02 AM
I think I messed up the reply Annekat it appears below Geoff's, I think.
I'm really glad that things are better for you. I think I maybe had unrealistic expectations also of treatment. My consultant said initially that he hoped to have me of all medication in 18 months. I think though he maybe was just trying to help me accept treatment, I was kind of resistant to it initially because the previous medics made it sound so dire!

Geoff
08-05-2015, 12:53 AM
Hi Bloom,

With regards to my RTX treatment, I had worked my way thru Cyclo, Plasmapheris Exchange, Azathiaprine, Mycrophenolate Mofetil, Campath (Alemtuzamub) before I finally went onto RTX. The doctors at Addenbrookes said that they were keeping it back in case all else failed!
I am very lucky to be seen by Dr David Jayne at the Vasculitis Clinic at Addenbrookes, he is a very well respected authority on Vasculitis.
I live in North Essex near Colchester and its about an hours drive to Cambridge for my visits, never a chore, always a blessing!

Reading between the lines, are you confident about the treatment you are receiving? I know Gilders managed to get a referral to Addenbrookes and he lives in the N.E of England. I understand your dislike of steroids. I have been on them constantly for the 7 years since DX but am tapering slowly and successfully at this moment.

Keep in touch and let me know how you get on. Down here we attend several WG get togethers which prove to be very supportive and good fun. Have you checked out John and Susan Mills from the Vasculitis UK site?

Bloom
08-06-2015, 06:14 PM
Hi Geoff, thanks again for your helpful advice. I am glad that the treatment has worked for you at last.
Like a lot of people it took me a long time to get a diagnosis, and even now I'm still unsure. I sometimes wonder how much is due to illness or just getting older!
The WG get together sounds like a great idea.

gilders
08-09-2015, 04:19 AM
People and doctors have different opinions of what remission is.

My personal view is very similar to Drz's - symptoms under control and no meds or no new meds planned on being used.

But even if you achieve med-free remission, you're likely to have some long term, permanent effects. Some of this can be directly linked to a damaged organ, but there also seems to be things like fatigue that can't be pinpointed to anything other than "after effects" of Wegener's even when you've been in remission for a long time.

Bloom
08-10-2015, 06:17 PM
Thanks Gilders, I wondered if some things might also be considered acceptable in remission, like earache etc. Whereas some things not, new growths in lungs and coughing up fresh blood. The treatment centre I attend views lung symptoms as their priority I think, but then that is their specialism.

drz
08-10-2015, 09:22 PM
People and doctors have different opinions of what remission is.

My personal view is very similar to Drz's - symptoms under control and no meds or no new meds planned on being used.

But even if you achieve med-free remission, you're likely to have some long term, permanent effects. Some of this can be directly linked to a damaged organ, but there also seems to be things like fatigue that can't be pinpointed to anything other than "after effects" of Wegener's even when you've been in remission for a long time.

Fatigue is major issue for Weggies and was main article in the last Vasculitis Foundation Newsletter. I attribute my feelings of fatigue and lack of endurance to my damage from the Wegs to kidneys, lungs, neuropathy, etc and weakness caused by meds and maybe some to the stress of trying to manage two chronic illnesses (diabetes and Wegs). But it seems there is also some additional unclear, unknown or undiscovered reasons for why fatigue is such a big issue to many, perhaps most, people with Wegs or similar autoimmune disorders.

Yet there are the extreme examples of some Weggies doing impossible physical tasks that most healthy people cannot do, like climbing Everest, running the Idatirod, biking cross country etc. that are harder to explain given our tendency to often feel fatigued.

Birdie
08-11-2015, 05:01 AM
But it seems there is also some additional unclear, unknown or undiscovered reasons for why fatigue is such a big issue to many, perhaps most, people with Wegs or similar autoimmune disorders.

I read a paper about how muscles work and how body chemistry affects the muscle's ability to make use of the chemical energy used in contracting muscle tissue. It was understandable while I was reading it, not so much a couple years later. What I took from it was that a condition like Weg interrupts the chemical reaction, accounting for muscle fatigue, my biggest issue for the last 4 months. Like an old cell phone battery that runs down fast, I have to lay down to recharge the muscles. Recharging takes much longer than discharging. On average, 5 min on my feet needs 30 to 60 min for recharge.

annekat
08-11-2015, 05:17 AM
I read a paper about how muscles work and how body chemistry affects the muscle's ability to make use of the chemical energy used in contracting muscle tissue. It was understandable while I was reading it, not so much a couple years later. What I took from it was that a condition like Weg interrupts the chemical reaction, accounting for muscle fatigue, my biggest issue for the last 4 months. Like an old cell phone battery that runs down fast, I have to lay down to recharge the muscles. Recharging takes much longer than discharging. On average, 5 min on my feet needs 30 to 60 min for recharge. That's a lot of recharge time for five minutes. My need to recharge accumulates over the course of a day. I do definitely feel the muscle fatique on a daily basis, when walking up a steep driveway or lifting something heavy. The muscles feel sort of like rubber bands getting stretched out too far. The theory you read about sounds plausible, and I also think there could be permanent blood-vessel damage throughout the body, including the muscles, which prevents the blood from adequately supplying the muscles with what they need to work. And there is also our brain, which may have been affected and become less good at telling the muscles what to do. My theories are based on little knowledge, though.

Birdie
08-11-2015, 07:04 AM
That's a lot of recharge time for five minutes.

And that's why I'm in a wheelchair.

I don't get spoons in the morning, I get one small rusty bent olive fork. I use it up getting out of bed and into the bathroom. That takes anywhere from 5 minutes to 30 minutes. Rest during the day gets me spoons. 3:00 TO 6:00 PM I've got enough spoons to get groceries, in a wheelchair, one bag at a time.

On a good day I could go to a movie. Mmmmm, buttery popcorn...

Bloom
08-12-2015, 08:01 PM
What are Spoons?!
I increased my prednisolone to 20mgs daily as instructed and so far feel worse. Still coughing up blood and my lungs feel as if they are being compressed! This was a symptom I had a lot before. However, I have to admit I feel a bit better at night. Does anyone else get woken up by a sinking feeling in their chest? I assume it's an ectopic heart beat.

I am having a CT scan at the end of the week and then they'll discuss treatment options. I think it's going to be methotrexate though. The Dr said it would either be something IV or orally, I don't know why I didn't ask him what treatment is available. I did ask him whether it was something else in my lungs that was bleeding. He said that they'd looked at the tissue from the hospital that did the biopsy and it was vasculitis, most likely Wegener's.

Bloom.

Pete
08-12-2015, 11:38 PM
Hi Bloom,

What are spoons? Read this: But You Dont Look Sick? support for those with invisible illness or chronic illness The Spoon Theory written by Christine Miserandino - But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

As for your other issues:

> 20 mg of pred may not be enough. Many of us were on 60+ mg at disease onset and during major flares.

> Good that they looked at your biopsy tissue and got a pretty definitive diagnosis. Are any of your docs vasculitis specialists? If not, they can consult with one and get further guidance regarding treatment.

> Before you see your doc again, write a list of questions you want answered - and don't stop asking until you have answers you understand.

> The CT scan will probably show where the damage is and its severity. This is a good tool.

Hope this helps!

annekat
08-13-2015, 01:05 AM
Bloom, it sounds like your docs are on the right track, getting a biopsy and a CT scan, but I'm afraid you aren't getting enough treatment and they sound too hesitant and tentative about what it will be. I agree with Pete that, even though they will be deciding on an immunosuppressant soon, you should already be on a lot more than 20mg. prednisone, considering your symptoms and that they think it is WG. 60mg. would be typical to get you through the period of no additional meds, and continuing with the start of treatment they decide on. Then it can be gradually reduced over time as you show improvement. Coughing up blood is serious, and I don't think that methotrexate is often considered strong enough for that situation. I would expect CTX or RTX, to start with, and maybe a change to MTX later. CTX worked very well on my lung issues. RTX is preferred these days but may take a little longer to work. One or both may be used in treatment. I'm no doctor but am going on all the many cases I've read about on this forum. Do consider the lists of recommended specialists here: VF Medical Consultants (http://www.vasculitisfoundation.org/mcm_resources/medical-consultants/) , either to see in person or to have your docs consult with. Also look at this list: http://www.vasculitispan.org/united-states for lists of docs by state recommended by patients even if not known by the VF as experts. If you are not in the US, you may navigate to other pages listing docs elsewhere. Best of luck to you, and let us know what your docs decide.

Green Grass & High Tides
08-13-2015, 11:32 AM
To Assess Wegeners Disease Activity: Here is a link to the BVAS / GPA Scale (http://prod-gpampa-gene.s3.amazonaws.com/pdf/BVAS-GPA_evaluation_form.pdf)

They assess disease activity as: Severe, Limited, Persistent and Remission.
I think the lung bleed may be severe. I take counteractive meds to deal w/ the pred. I tried it w/out the pred (at a therapeutic dose >40mg) and it got ugly, even w/ rituxan. I doubt I would survive on sub therapeutic pred doses during flares. Fludrocortisone is being patented now for wegs as an better, less damaging alternative to prednisone but theres no info on it yet...
BIRMINGHAM VASCULITIS ACTIVITY SCORE FOR GRANULOMATOSIS WITH POLYANGIITIS (BVAS/GPA)

Several vasculitis activity indices have been developed for use with multiple forms of systemicvasculitis6-8
In contrast, several researchers refined and validated the BVAS as a disease-specific activity index for GPA8

Deletes features from BVAS unlikely to occur in GPA
Categorized into 9 groups by organ system
Places higher weight on 15 major items considered threats to life or organ function
Range 0–68


BVAS/GPA correlates well with the physician’s global assessment of disease activity, is sensitive to change, and has good inter- and intraobserver reliability8

Includes determination of disease status

Severe disease/flare
Limited disease/flare
Persistent disease
Remission



BVAS/GPA SCORING9

The BVAS/GPA score assesses disease activity at a given time point as the sum of individual organ system manifestations, defined by a list of 34 weighted items, caused by active disease, with respect to whether symptoms are new, worse, or persistent
For the assessment, each of 34 items is categorized as either major or minor, depending on immediate threat to life or organ, with major items given a weight of 3 and minor items a weight of 1
The maximum combined score of the BVAS/GPA is 68

Vasculitis Damage & Activity Indices | VDI, AVID, & BVAS/GPA (http://www.ancaassociatedvasculitis.com/patient-presentation/damage-activity-indices)

crowneagle
12-18-2015, 09:15 AM
Every case is different. I have yet to formulate a set of principles for what remission is. You have to be a very observant scientist; in the strictest sense of the word. Observing bad signs is always easier than good signs. I particularly pay attention to pains in my body or hearing and visual disturbances. The thing about remission is that it can end at any time. I don't know about anybody else but it's a fruitless cause to try to decide when you are in remission. It's an incurable disease. We have it for life.

crowneagle
12-18-2015, 09:17 AM
Thank you. This is very nice!

Green Grass & High Tides
12-18-2015, 10:00 AM
This is PDF of the BVAS Wegeners Scale to see if the disease is in remission or where it's at.

It was updated in 2014 so I believe it's the most up to date one being used currently.

BVAS WEGENERS SCALE attached.

I've read that this scale is used to determine remission when conducting studies on wegeners, such as when Rituxan was tested.

Birdie
12-18-2015, 10:33 AM
This is PDF of the BVAS Wegeners Scale to see if the disease is in remission or where it's at.

That's cool, you're just full of good stuff.

Thanks
Gary