WG remission experiences?

[Meekle]

Can anyone help please? i have been in remission from WG for 10 years according to the doctors and 5 years off meds. now i am going active again, but it seems to be happening a lot quicker this time. is this due to either me knowig what i am looking for, or is it (as my wife suggests) that the WG has already got itself rooted, so without having to build up its "base of operation" it can just get on with attacking me? - your thoughts are welcomed. at the end of the day, this question is really a discussion as i understand everyone is different, jst want the get the groups feeling on this......

[PatriciaAnn]

Sorry if you get something similar twice. I replied this morning but it must have got lost in the ether.

Ten years in remission and five without meds, that's a wonderful achievement and certainly something i haven't been able to achieve.

One of the things with vasculitis, even in remission, is that the majority of us continue to be seen by our consultants. This is because the vasculitis is always present and may decided to start up again at any time. My opinion, for what its worth, is that because it is always present (but dormant) it doesn't take much to kick start it again. Also because we get to know what is and isn't normal for us as vasculitis patients, we know when something is going wrong, particularly when the symptoms are those which we presented with initially.

Pat

[John_Mills Volunteer]

It is an unfortunate fact that a significant number (around 50%) of WG cases in remission do relapse. Generally, the longer you go in full (drug free) remission, the less likely you are to have a relapse.

In simple terms, the immune system cells, the B cells, "remember" the antigens (bacteria, viruses, abnormal cells, such as cancer cells) that are "foreign" and undesirable and thus need to be destroyed - which is how we acquire immunity, So the body does not have to treat every "foreign" cell as a new enemy. If it has been dealt with before, the body is prepared for it. Except that in all auto-immune diseases, the immune system cells have mistakenly identified some of the body's own cells as enemies, so sets out to destroy them.

The hope with long-term immuno suppression is that the misbehaving B cells will "forget" their dislike for normal cells. Some of the newer drugs are better at doing this. Rituximab is very effective in dealing with remission cases as it is a "targetted" drug, aiming at B cells rather than having the "scatter gun" effect of a drug like cyclophosphamide. Other similar manufactured antibodies may yet prove to be even better than Rituximab at producing long-term remission.

Cyclophos works very effectively, both for initial induction and treatment of remission, but does have serious undesirable side effects and the greater the cumulative dose, the greater the risk of these occurring. Thus repeated use of cyclophos is undesirable. So today, Rituximab is usually the drug of choice for treating remission cases.

[Meekle]

thanks for the replies. what are the long term effects of cyclophos? i had my first lot 10 years ago, made up to a litre each time and infused each week for 6 weeks then every 2 weeks for 6 weeks in my last treatment round, but now, they have asked me to go back onto cyclophos and have 10 infusions..... should i go with it or ask for rituximab to be considered???

as always, thoughts welcomed

[PatriciaAnn]

Let's put it this way, if they wanted me to go back onto 10 infusions of cyclo I'd be asking some questions. There is a life-time limit to the amount we ought to have to prevent undesirable effects in future life. I can't remember what it is but I would have thought a further 10 infusions might be taking you pretty near, but you should discuss this with your medics. Unfortunately, bladder cancer is one of the undesirable effects which MIGHT occur.

John is correct, Rituximab is being used for refractory vasculitis. The only problem is that some Trusts don't like the cost of this drug.

Pat

[SandieB]

Hi i have had WG for 20+ yrs and was on a low dose of prednisolone upto about 4yrs ago when the hospital stopped the medication and within approx 18mth WG attacked with a vengence this time, so i have been very lucky to go all that time with out a relapse and because of being so well for so many years i didnt realise what was happening to me but hopefully after 2 1/2yrs they have started to control it again.

Sandra

[Alliand in reply to SandieB]

Hi Sandi ,

May I ask what were your symptoms that led to your diagnosis 20+ years ago and what were your symptoms that you describe as a relapse "attack with a vegeance."? And what was your low dose of prednisolone for all those years and what is your dose since your relapse?

Since all of this is new to me, except for the new and extraordinary upper body muscle/joint pain ,extreme fatigue , detection of C-ANCA PR3 antibody at low titre, a granuloma annulare biopsied from my hand, wth all other tests and scans being negative , and temporary loss of vision in left eye, poor stamina, I am not sure what to expect in terms of symptoms.

I know : I do not have a sense of well being, that something is wrong, do not seem to have a clear diagnosis in my own mind because of conflicting opinions of 2 highly reputable rheumatologists. I am on 16mg of Prednisone per day which barely controls shoulder and arm pain; that in addition to another painkiller Tramadol.

And did you or anyone you know have central nervous system symptoms such as shaky hands, occasional confusion? Thanks for aything you wish to share, and all others are welcome to respond as well.Thanks to all.

Alliand

[DevonLottie]

I had a serious relapse about three years ago - coughing up blood etc. My consultant, one of the top in the field of vasculitis, recommended I have cyclophosphomide again (second time in 8 years) rather than trying rituximab or any other treatment. This was because the severity of the flare required tried and tested methods to get it under control quickly. Since then I have had rituximab for a recurrence of wg in my eyes which was obviously less life threatening.

[Meekle]

thanks, that seems to make sense as since my first treatment my symptoms have come back stronger including severe stenosis and loss of nerve sensation in left side. perhaps thats why we are going down the cyclo route first...

[Howget]

Sorry to hear about your relapse. I was dagnosed with WG about twelve years ago. I was treated with cyclophosomide to begin with at my local hospital and went into remission. However, six months later I had a relapse and I was treated again with cyclophosomide and up to the eyeballs with steroids. Luckily, my daughter found the wonderful but sadly late Dr. Lockwood at Addenbrooke's and he treated me with a drug called campath at the time. I believe it is called alemtuzamab now. I'm on six mgs of prednisolone daily and the WG is under control. And the equally wonderful Dr. Jayne and Sister Stella Burns have been taking great care of me. Good luck.

[Hidden]

As some of you are aware, I don't feel the word 'remission' is an appropriate designation within vasculitis, particularly as the disease is incurable and has no reliable biomedical markers. Even Dr David Jayne at Addenbrookes suggested he felt the term unsuitable. My preference is to use 'quiet' for periods of iapparent inactivity but at the end of the day it's about how we actually feel than a label to hang on the feelings that really matters.

John's explanation is particularly fitting and recent findings suggest that following Rituximab the returning B cells are passive (seemingly there are two types) and therefore less likely to trigger the disease.

[Meekle]

martin - too true. as you say its how you feel and after 10 years since treatment, 5 years without meds i am now starting to feel "crappy" again. i wonder if the reason Dr Rees is going all out with cyclo again instead of rituximab is that as my symptoms appear worse than before so i think he wants to hit it with the big guns and then follow with azioprathine (check spelling!!) to maintain it.

i am seeing him on the 4th jan so i will speak to him then