Steroids & Immuno Suppressant Drugs?

[Nadine99]

Still new to all this, husband recently diagnosed with WG. He's been on Prednisone which is still being reduced every 10 days but has never been put on one of these Immuno suppressant drugs people keep talking about i.e. Cyclo something or Methotrexate and other names I can't remember. He's on lots of other things like calcium, blood pressure, potassium plus but not a seemingly named Immuno Suppressant. Any input would be helpful before he next sees consultant.

[bradders66]

Hi I was diagnosed in July 2011 with WG . I have it in the sinus area only no lung or kidney involvement. I was put on 40mg of pred for 3 months then started reducing. Now down to 7.5mg. My consultant has been keeping a close eye on me with appointments every two weeks to start now monthly. He and I want to avoid the chemo drugs if possible. But we are both aware that any changes in my condition and I will then have to start taking them.

I hope that helps with your question.

[BooBoo39 Volunteer]

Hi Nadine... The steroid prednisolone reduces inflammation in the body caused by the vasculitis because it suppresses the immune system. Vasculitis takes place when the bodies immune system goes into overdrive and attacks the body rather than healing it. Initially treatment is tried usually with Prednisolone on its own to try and dampen down the bodies immune system.Quite a high dose is initially used and then it is is gradually tapered down with monitoring over several months. You will also find as you mention that your husband can be taking an array of drugs hopefully tailored to his individual symptoms to ease any other issues. Be aware whilst your husband is on 'Pred' that because his immune system is suppressed he will find if difficult to fight off any common ailments such as colds ,stomach bugs etc . So it is sometimes easier especially this time of year not to put yourself in a position where you are sure to pick something up. Because you will find if you are unfortunate to catch an otherwise harmless bug under these circumstances you can get quite poorly. If after a while the 'Pred' is not having the desired effect or cannot put the vasculitis into sustainable remission then another immuno suppressant will be used alongside of it to kick start a remission. This is where cyclophosphomide or Azathoprine(getting a little dated now) or Rituximab are used. Something like rituximab has a good remission track record. But beware!!! Any immuno suppressants including pred carry risks/side effects. So initially if you can get a result on pred alone you are lucky. THe other ones can pose greater risks and so are not used lightly. You will also find it is in your husbands best interests to have a team of medical people looking after him rather than just one. This ensures every symptom no matter how trivial is not overlooked. Don't be worried to ask questions if you are not sure. If a professional is unwilling or cannot answer find someone who will. You will find after a while that you begin to understand better what is going on and which symptoms are commonplace for your husband and which are cause for medical concern.

Hope this helps .. best of luck

[PatriciaAnn]

In moderate or severe cases the "normal" treatment for WG is chemotherapy (cyclophosphamide) and differing doses of Prednisolone (steroids). In milder cases where the kidneys are not involved milder treatment with prednisolone and less toxic drugs, eg methotrexate may be given. Usually prednisolone on its own won't "cut the mustard". The Pred will help reduce the inflammation but it's the other drugs which help to zap it.

So it depends on the degree of involvement and the knowledge of your consultant. Therefore, at your next consultation you need to know why your husband is being treated in the way that he is. He could be having the correct treatment, we can't address that here as we aren't doctors, the point is you need to know the whys and wherefores. If your physician is worth his salt and knows what he's about he will be more than happy to discuss your problems.

Rituximab is the new drug on the block. It is being used more and more, but it doesn't suit everyone. Also it is expensive. Some Trusts won't pay for it, especially in the initial stages although they will fund it in cases of relapse or where the patient does not respond to "normal" treatment or cannot tolerate the drugs. Again you need to ask.

Patricia

[John_Mills Volunteer]

I agree entirely with Pat's reply. Some doctors refer to this as "limited" WG, which can be deceptive. The real risk is that the pred supresses the symptoms whilst allowing the disease to continue doing damage "below the surface". So it needs very careful monitoring. Many doctors place too much reliance on the results of the ANCA test as an indicator of disease activity. Unfortunately, although it is a guide, it is not a wholly reliable indicator. Having a team of consultants looking after you is great if they are all talking together and working as a team. That's very different from being passed from department to department, with nobody seeing the whole picture, as often happens. Good luck and best wishes to you and your husband at this worrying time, Nadine. I hope all these comments are helpful and not just causing you more anxiety!!

[AndrewT in reply to John_Mills]

Maybe this would be a good time to produce the 'Glossary of Terms/Drugs' that we all spoke about two years ago! The drug companies themselves might be prepared to help. I'm quite willing to be the one who asks the questions (I sound like Jeremy Paxman!). After all some of these terms are a difficult, even for us-well me anyway. Can you let me know please?

Love to Susan please.

AndrewT

[PaulBingham]

Hi Nadine,

I agree with all the other answers

The only extra I would add is that you and your husband will come to know almost as much about WG as your consultant, always asuming that you an inquiitive sort which I suspect you are.

In some instances the Medical profession may not meet your expectations. PLEASE dont be put off by Doctor knows best. Fight for the best treatment and challenge your doctor if you are not satisfied. After all, it is your body and you deserve the best.

Contact one of the regional Vasculitis groups and talk to the attendees as to which doctor hospital in your area is the best.

Good luck

Paul

[Nadine99]

Thank you all. This is very helpful and now I know what questions need to be asked. We are living in France at the moment so it makes all the questions a little bit more difficult although they do speak better English than our French!!

He is still having lots of different tests and so far, his problems are mainly in is head, but as you say, the tests need to have someone look at the results in combination with each other.

For those that suffer from fatigue, is there any hope that this might go away? He finds this the biggest drawback to having WG, he just can't do much and finds it so frustrating.

[PatriciaAnn]

Yes Nadine, fatigue is one of the things that affects most of us and there is quite a bit of work being undertaken into the exact cause(s). In the Spring Newsletter/Journal there will be a review of a paper on fatigue by Dr Basu in Aberdeen. Also there will be an update on the current situation with the fatigue research being undertaken at Birmingham University Hospital.

When newly diagnosed the fatigue tends to be greater than it is further down the line. I'm afraid that tiredness and fatigue in vasculitis isn't something you can't fight. Well you can but you won't win. Rest is essential, even going to bed for an hour or so in the afternoon. Do what you can do on the days you can do it, don't on the days you can't . Whatever needs doing will still be there tomorrow - that's the best advice I can give.

It is frustrating especially as most of us have lead such active lives before the vasculitis struck. It takes a lot of getting used to I'm afraid but it will get better.

Patricia

[PatriciaAnn]

Sorry, that should have read "vaculitis isn't something you CAN fight"

[bradders66]

I found the fatigue hard to deal with but I've been lucky and it passed four months after being diagnosed. I still get the odd tired day when I have to rest up but nothing like the early days when I just wanted to sit down and sleep all day.

[Hidden]

Immuno Suppressants have such a bad rap but they have to let you know about the dangers even though it's not likely that those things will happen. Many people take them for various conditions. The main difference is how often for specific conditions. Methotrexate is used to bring down the inflammatioin. It's chemo... it's also a very small amount of chemo (like drops of it) compared to what cancer patients would get. Usually a syringe is needed to inject the solution just under the skin. Some classes of that drug are taken orally. The injection gave me far fewer side effects but it became toxic for my liver. That happens to a handful of people so blood tests are needed monthly, if not every 3 months. What it did is that it brought down swelling and inflammation, improved my numbers in my blood tests.

Does it bring down your resistance for colds/flu/ other infections?

Yes.. handwashing and not touching the face is what needs to be in good

practice. I even wash my hands before blowing my nose. It's working that I

am not sick. Right now, I am going to re-try methotrexate. Its been a good

2 or 3 years since I last had it and it worked really well

If the biologics are going to be used, let me know. I am well seasoned in

that department too. Let me know. -=) P.S. I am living in the USA. Our

drug names may vary a little but I have good knowledge of how they work

and what they are.

[Hidden]

Forgot to tell you about Folic Acid... it counteracts the side effects. Mayo Clinic in the USA prescribes 1mg of it along with treatments. Everyday. Make sure to ask your doctor about the B9 or Folic Acid