When we returned to the UK, my husband was treated at Addenbrookes for his WG. Up till this time, he had just been on steriods but Addenbrookes put him on Methotrexate and started decreasing his Pred. He's now on 25mg a week of Meth, and was down to 10mg of Pred per day. He keeps having problems with rashes and respiratory system, sinuses etc so he's now gone up to 15mg of Pred a day. It seems that the hoped for result of Meth keeping his WG under control is not working.
He's got a specialist appt on Weds although she admits she doesn't know a lot about WG so we're going to ask to be referred back to Addenbrookes again.
My question really is, have other people been put on one of these immune supprescent drugs, found they don't achieve anything and then changed to something else? I'm sure this is the case, but he's worried that by changing, he might get worse first before starting to improve.
Any comments before we see the specialist would be appreciated.
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Nadine99
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I'm sure you know now that for WG treatment steroids alone won't "cut the mustard". If the consultant your husband is seeing doesn't know about WG then you are doing the right thing by going back to Addenbrooke's. The vasculitis team there will know exactly what to do.
Yes, changing drugs is something that happens. We are all different and we react differently not only to the drugs but the way our vasculitis behaves. I was on CellCept for ages and it worked. Then suddenly it didn't work any more and I was changed to Azathioprine. If the drug your husband is on isn't working then he probably needs a different one, and yes, he may feel a little worse before getting better but as he isn't right now, he appears to have everything to gain. Be guided by what they say at Addenbrook's and good luck to your husband.
I have been on an awful lot of different drugs. Initially the consultant referred to it as trying plan B. I now think we're up to plan J or K or something like that! I have tried, with limited success, Azathioprine, Ciclosporin, Mycophenolate Mofetil, Methotrexate, Thalidomide, Cyclophosphamide, and of course steroids.
So there are always more things to try. I will be seeing another consultant on Monday to discuss an experimental biologic therapy. Fingers crossed that proves more effective for me than anything so far. But my case is very resistant to treatment, although it played nicely in the first few years after diagnosis. Since 2004 though, nope, not so good.
I too have tried an awful lot of different meds, cyclophosphamide worked to start but then things came back. Everyone is different and they have many different medications some work for some people and others for other people. I started rituximab two weeks ago so hopeful this works for me. I too am treated at addenbrookes
I have had about 10 different medications and dosages nothing seemed to help, until I had my first minor stroke and they put me on Cyclophosphmide which worked but was only allowed 6 months of that! so it all got worse again and before Christmas had another minor stroke and was on Methotrexate 250mg weekly and Azathioprine 25mg daily. My doctor said I had not being on it long enough as it takes about 3 months to get into the system - so I felt it was like cross fingers BUT I think it is working!?? so you they may even need to use two immune suppressants.
I don't have WG, but am still having to try out different drugs.
Changing medication seems fairly normal.
I started on 60 mg of steroids, but my response was 'atypical'. Added in methotrexate which had a positive effect, but ended up doing me 'more harm than good'. Tried cyclophosphamide, and felt better than i had felt for a couple of years, but 'definitely too strong an a allergic response'. Just had my first rituximab infusion, so crossing my fingers that this is the one for me! Quotes are from Addenbrookes, who seem quite used to this.
John was taking oral Cyclophos after the initial infusions for his WG...12 years ago... his consultant put John on Azathathioprine as a maintenance drug and it not do a thing for John's WG and he very quickly became very ill again with the WG.... so yes...different drugs do suit different people.... John has been taking Mycophenolate since 2006 and it seems to suit him very well...so much so he was weaned off the prednisolone all together 2 years ago and is now reducing the Mycophenolate.....
Thank you all, Ed was worried about changing but as his WG is not improving, we feel it's going to be necessary and this is obviously happening to many of you, so we'll see what will be on offer. A new cocktail for me to put on the spreadsheet and dole out to him each week!!
I tried Methotrexate but the side effects of breathlessness were so bad that I could hardly walk.It was quite worrying and apparantly dangerous.
I spent a week in hospital being detoxed with a huge increase in steroids. Thereafter I came out and tried a mix of Azathioprine and steroids with the latter reducing over time.
As to your doctor admitting that she doesnt know much about Vasculitis, this is all too common. Put some pressure on her to refer you to someone who is qualified to treat you. If this is unsatisfactory, keep going to Addenbrookes,but if this is too far for regular treatment, get your consultant and/or your GP to find someone more local.
I reiterate John and Susan's comment that different drugs and dosages suit different people. The secret is to work with your doctor to get to the right formula as quickly as possible. Dont soldier on knowing that things are not right.
Well, Ed's now had his appt with his specialist, and we have been really very pleasantly surprised. Straight away she advised Cyclophosphamide as infusions for 6 mths followed by a maintenance drug, exactly as the Roadmap explains and as suggested by contributors here. She has also checked his bloods, done a chest xray and is making an appt about his eyes - we think she knows more than she's letting on!!
A good outcome, now we just have to hope this change of drug helps but it's just refreshing to know that some doctors are trying.
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