WG doesn't always wreck your life

I posted on this site that I'm diagnosed WG but not taking meds and was shocked to be told by people on here that I am wrong and should take them - based on no medical training or knowledge of my case. Let's be clear, the meds cause horrific side effects, and are not a magic cure. So thanks for the lecturing but I'll paddle my own canoe. Ran a 10k race last week in 1:05 hrs, working full time, no moon face and great quality of life. I take high dose MSM every day and despite 20 years of on/off ENT issues and a few operations I'm otherwise fine. Life doesn't have to be meds, misery and a downward spiral - if you are lucky.

[PatriciaAnn]

Hi Pompeysaint

I'm sorry but I'm afraid I don't recall your earlier post or the replies. It isn't normally the way we reply to anyone to tell them they are wrong and what they should do. Lecturing people just isn't what this site is about. If that is how it came over then I don't think that was intended. If it was intended then I'm sorry.

We merely say what has been the case for us and what we think is generally good practice for people who have vasculitis, again based on our own experience and what we have read in properly researched documents.

Of course we aren't doctors, we make that perfectly clear, and of course we don't have any knowledge of your case.

It is perfectly clear that the meds have some awful side effects, but there are not many of us as lucky as you have been. Many of us would now be dead if it hadn't been for the medication. Lots of people have died because they were never diagnosed and treated properly. For most of us meds are a way of life - if we want to keep living.

It is good to hear you are doing so well, but I'm afraid the reality for most of us isn't the same as it is for you.

Best wishes and continued good health. PatriciaAnn

[John_Mills Volunteer]

You are making mistaken assumptions about "no medical training" and quite obviously we only know what you have told us. I think it was your doctors who wanted to prescribe the meds and you who disagree.

But of course it is always your decision and your choice. Any suggestion or advice given here is based on a wealth of cumulative experience, both personally & jointly. There is no obligation to pay heed to any suggestion or to read what is put. Most people seem to find the feedback on this site to be highly beneficial, but clearly not all!

[Hidden]

Balance on these sites is really important, vasculitis isn't always such a trauma. I've also found medics who acknowledge they killed as many as they cured as recently as 10 years ago - frightening. I've also found medics who strongly oppose putting people like me onto toxic treatment plans. I'd advise anyone who isn't really badly impacted to look at all the options. There are options and medics are only as good as the books they have read.

[daisymoon in reply to Hidden]

For as many who are treated successfully with conventional drugs, they are probably many who die from the side-effects. Not scaremongering, but it's a fact that sometimes the treatment is worse than any disease. Having said that, as you say, there should be a balanced approach. I am very anti-drugs - yet if my life depended on it, I would have to find a way to take an integrative approach. No one wants to take drugs do they? Sometimes they are a necessity, but should always be approached with caution. All drugs treat symptoms and not the cause...

[John_Mills Volunteer]

You are right, vasculitis is a very variable disease. Until the mid 1970s when the powerful drugs were introduced, ANCA vasculitis such as Wegeners invariably resulted in death within weeks or months. Many people died due to the side-effects of large dose steroids - the only treatment that would hold the disease at bay. The modern immune-suppressing drugs are considered to be "steroid-sparing drugs.

People do still die due to vasculitis and the sad fact is that even now the 1 & 5 years survival rates for ANCA vasculitis are worse than for breast and prostate cancer. I would not want to be treated by any doctor whose knowledge was only that of the books they have read.

The doctors who advise us have extensive experience of treating vasculitis, work on the basis of an evidence base and are the doctors who carry out the research and write the papers and books. We follow their example and only adhere to evidence based practise, not opinion or anecdotal evidence.

I was at the Paris International ANCA Conference last week. There was a full session devoted to tracheal & bronchial stenosis. Nobody was recommending that surgical intervention was to be used without medication, only when the medication failed to stem the disease. But the choice is yours and you may prove to be correct - or not.

[blrkunal]

Having had a friend who suffered from Vasculitis (MPA), I explored several alternate treatments. Other treatments (Alternate Medicines using vitamins and change of diet/food and lifestyle) like those provided by Dr. Mouton etc. are found to be useful too.

[Coffeebix]

I have TAK/GCA and I am haing lits if nasty drug side effects. I would be very interested in reading up on alternative treatments for Vasculitis. Can anyone refer me to any links or any books on this. Thank you.

[PatriciaAnn]

We are, of course, all free to make our own decisions, but please make your decisions based on fact and not fancy. There are no EVIDENCE BASED alternative treatments for vasculitis. We all have drug side effects, but logic and common sense should tell us that we are given them for a reason. I went through hell for the first 12 months or so, and after 10 years I am still here and doing well. There may be consequences further down the line from taking the drugs, but I know which I prefer - dead 10 years ago or what I have now - drug induced remission.. Obviously this stuff is toxic, you can't put it into your body without having some sort of reaction. If things are that bad speak to your consultant, it may be that the drug doesn't suit or maybe the dose is wrong, or maybe he/she can prescribe something to ease matters..

You would probably be better off with an excellent diet, cut out the crap, reduce or stop the booze, stop smoking if you smoke, exercise a little if you can, take pharmaceutical grade Omega 3 capsules and maybe sprinkle organic flaxseed into your breakfast cereal, and drink sufficient water.

There are alternatives out there which will probably help you feel a little better, but there is no evidence that these will get you into remission and that they will keep you there. Please if you are thinking of any sort of alternatives, discuss this with your doctor. If you decide to take them, and they are not contraindicated, then take them in conjunction with your prescribed medication, not in place of..

If this is coming over as a lecture it isn't meant that way. We at Vasculitis UK have heard many dreadful tales of people not being diagnosed early, of people not being treated properly and the dreadful consequences.

Love and best wishes. PatriciaAnn

[Deb01]

I also suffer from WG and currently take only Co-Trimoxazole. I asked my consultant only last week about whether he intends to give me any of the stronger medication I have read about. He, as well as other doctors I have seen, insist that because all by bloods are entirely normal at present (including ANCA), he is not happy to prescribe anything stronger. He could tell that I was concerned and went on to explain that I seem to have gone into remission without the aid of any treatment and have no active disease whatsoever at present. He says that with close monitoring of bloods, urine and symptoms, unless I feel really unwell in the meantime, be will continue to review me every couple of months, and will prescribe as and when necessary. He understood my anxiety and was extremely reassuring in my case. Its quite obvious to me that there is a great deal of variation in levels of this desease and each case very different. Its about vigilance and monitoring. I was also reassured that should things flare up at any time, there is a great deal which can be done about it, and I should leave the worrying entirely to him and his team. I'm happy with this and have a bit of peace of mind at last.

with best wishes. Debbie

[daisymoon]

Pompeysaint: There is often criticism from those on conventional treatments, but this is wrong. Everyone is an individual and must respect others' choices. That cuts both ways - and means that those on alternative treatments should also respect those who perhaps don't have much of a choice, due to their spiralling condition.

What is clear is that steroids only reduce inflmammation - and are not a cure, so if you can find something which reduces inflammation without side-effects, that's great.

That doesn't mean it cures you though, any more than steroids do. Sad fact is there isn't cure as such, but there are a myriad of illnesses out there for which there is no known cure but which people 'control' every day and live well. I wish you well.

[LynneJ Vasculitis UK Volunteer]

Hi

I Googled MSM, the site was Web MD and there doesn't seem to be any conclusive evidence that it works. The amount of things it is used for is extensive.

The thing that concerned me was it is used to BOOST the immune system. Surely this is the last thing we need.

It can also have side effects.

It would be worth a try if the disease wasn't life threatening, as Vasculitis is.

I don't think I would risk it as I also would have been dead with out the drugs. I went for a year without drugs and the disease escalated gradually.

Each to his own though, I respect your choice and I sincerely hope you continue in good health.

Best wishes

Lynne

[daisymoon in reply to LynneJ]

Lynne: You say that 'vasculitis is life threatening, but not always surely? That's a rather simplistic statement. Cutaneous vasculitis for example, is not generally considered so - and no disease is life threatening per se, only potentially so. It's an important distinction to make...

[LynneJ Vasculitis UK Volunteer]

Yes potentially but I don't think it is a simplistic statement.

I am speaking from my own experience and the way the disease works.

it is when the major organs get affected that it is life threatening.

And some are worse that others.And everyone is affected differently. I would just say be sure and get all the information available before making your decision. And be vigilant and keep having checks. .

Lynne

[John_Mills Volunteer]

As I said earlier, WG is a very variable disease. There is a type of Wegener's which is referred to as "limited" (or non-life threatening)which is sometimes treated using co-trimoxazole. Long term use of steroids in doses above 5mg has very serious consequences. It is important to understand that the ANCA test is NOT reliable as an indicator of disease activity. It is one of a series of indicators, most of which are about how the person is, not involving blood tests or scans. Unfortunately many doctors place too much faith in the ANCA result.

One question: why would clinicians treating people with vasculitis prescribe powerful cytotoxic and life-threatening drugs if there were less toxic effective and possibly cheaper alternatives available?

Can we clarify terms. The conversation above has been about ANCA vasculitis.

There are 18 types of vasculitis and only 3 of these involve ANCA, although this is the type of vasculitis that, in terms of numbers, kills and seriously disables most people. Some types of vasculitis (such as HSP) resolve spontaneously (although they may recur and leave lasting consequences). Some types, like cutaneous vasculitis in various forms, have the potential to be limited or systemic. The lines are blurred as is the distinction between the different types of vasculitis and between vasculitis & lupus.

[Hidden]

I'll read and write again tonight. Hope you all have a relatively stress free day!

[Ayla Volunteer]

I have been thinking about the reasons why you first wrote a post on this site, Pompeysaint, and why you feel the need to 'go for' those who have given you advice. From the first post, it seems you were hoping for back up in your decision to refuse drug therapy for your WG, while telling us you had had operations to deal with the damaging effects and were hoping for another, thus indicating the damaging effects were continuing? Ok. We were not able to say 'carry on as you are' to that one as we all believed that further operations were not the way forward and could not prevent disease progression.

Your message above seems to have the same sort of hope. Back me in my decision, I am right. You may well be right, for you, but from the wealth of experience on here, your way may not be the way forward you hope it is.. As Pat says above, there is no cure for WG (as yet!) and leaving things alone, even with a very healthy lifestyle, is unlikely to maintain you in good health.

Reading between the lines, can I guess that you have a huge underlying anxiety about the future and what it holds in terms of the disease? If so, and forgive me if I am being presumptious, then you are certainly not alone. We have all been there, on numerous occasions, and continue to live with this sort of feeling.

Can I share that I, too, have fought tooth and nail not to go down the medication road? I have MPA. For 8 years I sort of existed on a daily dose of 5mg of prednisolone and that was all. I say sort of existed because I had regular flares which prevented me from living as I wished to do, although these were interspersed with good times when I felt pretty normal. It was only when my kidneys became involved, and were rapidly failing, that I gave in to the chemicals and now, thank God, things are stable. I know the drugs saved my life, even though, like you I was trying every sort of supplement, and a healthy lifestyle, to make me feel better and stop the flares. They never did.

If you have found a way of dealing with vasculitis that does not involve drugs and gives you a symptom free existence, I applaud you and beg that you share this secret with the rest of us. If not, then we are here to help. I wish you all the luck in the world!

Ayla

[BronteM]

It took about two and a half/three years before I was diagnosed; I was told that this was fairly normal for someone with TAK/GCA. In those years I had tried a range of supplements, and physiotherapy, massage and aromatherapy (among other things) for the constant pain on my arms. I also went to alternative practitioners and researched various diets, private blood tests, etc. Nothing helped, and I imagine a lot of us have been down a similar route before we started on more conventional medicine.

This morning I changed our sheets, got dressed without help, even got in and out of the bath on my own - none of this was possible a year ago. I don't like the drugs, especially the prednisolone, but it probably saved my life .... and I am weaning off it.

TAK/GCA patients are particularly prone to problems with their sight or strokes. Last week I went to see my lovely, vibrant and always immaculate neighbour in hospital. She had a stroke three weeks ago. It was very hard - her face is a mask and her voice a whisper, and she is bundled into an assortment of 'easy' clothes. She is doing 'well' apparently, but it is a terrible shock to see the very sudden change, and imagine how trapped she must be feeling. And brings home the warnings I get from the clinic - you need these drugs.

Now I am off to walk the dog....a new return to some form of normality and one I relish every day.

[kath12341]

Hi I have had wg for 6 years now and if it wasnt for the treatment I recived I would be dead as the consultant clearly siad. i had been unwell with odd things for a while but gradulay had gotten more unwell. I had a major episode in which my eyes became som inflamed and I aslo got nodules on my eyes and my left eye is still scarred and when the eye consultant saw me she asked about my next appointment wtht the rheumatalogist. which was not for 2 weeks she rang and got me seen the next day which was a saturday. i was allowed to go home and get my clothes and was having a cuppa when the hositpal rang and said I neede to get back immediatley to start treatment. I wanted to delay ttill the Monday as the saturday was my birthday . the consultant went and got the cyclo himself and mixed it as he said Monday would be to late! It took two full cycles of cyclo with the second does being increased by 50% and another 18 months of treatment before I got into clinical remission. I am still not fit and am getting other symptoms but at least I am alive. You are perhaps lucky and are able to continue without medication but I know in my case withut the constant medication and extre interventions I would be dead.

[Hidden]

Read all your healthy debates after my post. First up I'm not trying to upset anyone, and if I was seriously impacted by WG i might well take every toxic drug going. But I'm not. And many others are not. I'm keen to explore with those on the non severe end of WG thoughts on options and non treatment. It's my body, my life(or death) and my choice - medics often lose sight of that.

WG is complex, vastly differing in it's presentation and severity and acknowledged by the top consultants as often impossible to predict it's path. My issue is taking a huge toxic sledgehammer to crack a nut with the people like me who are not severe. And luckily I'm not severe - had WG about 20 yrs with no death in sight. Ok big deal a few ENT operations, to add to a few sports injury operations. Surgery isn't a big deal - ask any professional sports dude. And I'd rather have surgery every few years than meds every day.

Doctors usually don't like it because I suspect they like experimenting and getting their sample sizes up and they don't like picking up the pieces if things go downhill as a result especially if the NHS is funding.

Why this questioning of super doctors and experts you ask? Try a brother with an "incurable" lifelong disease called haemophilia who regenerated at 17. Impossible you scream - try reading the lancet it's all in there from 1980s. Shame most of his mates were given blood full of HIV and are now dead. Look these are facts.

So boosting the immune with MSM a bad idea? Not in my book. No more coughing, no more irritation, no more lethargy and no meds. Oh and no grotty illnesses either. Stress free happy and healthy.

Finally my anger in my first post was the appalling Royal Free hospital, which sent my stress levels sky high and the inflammation flaring - its calmed down now I have decided to paddle my own canoe.

Finally MSM usage is for all sorts as it improves connective tissue function. Massive usage in America and working for me alongside Bikram yoga!!

[antony9500]

As someone with a recently diagnosed son, who has no real interest in his illness and just plods along as usual, I have read comments on this site and others to keep me informed and up to date. I have asked for advice and it has been given - it was genuine advice with genuine support. It is down to the individual what actions they take.

As an avid reader of this and other sites I have never seen any dictates or judgements.

Unfortunately, as is often the case, some people seek pleasure in offending others with no consequence to themselves.

Why not read, digest, decide say thank you and quietly go on your own journey leaving what could be positive comments for others to enjoy and share.

There is no need to bully people into justifying any comments they have made

[John_Mills Volunteer]

Before rushing out to buy your supply of MSM do read this Wikipedia item (link below) about

the benefits or otherwise of MSM. There are several other sites recommending its use but also offering to sell it. The Wiki article is impartial and balanced. It does make the point that the active elements in MSM are readily available from natural sources such as garlic & brassicas. I would strongly recommend the use of plenty of garlic and onions, cabbage, broccoli & other members of the cabbage family, olive oil and fish, especially oily fish. I don't have any evidence to back this up - but it's all makes for very tasty eating.

en.wikipedia.org/wiki/Methy...

This has been an interesting discussion and is an excellent example of the benefits of this HealthUnlocked site for all of us. We don't wish to suppress useful discussion but we consider that this thread has run its course so we would request that there are no more postings after midnight tonight.