ANCA-positive and MPO - OR???

[Lima51]

I am new here and sorry for my English I am from Denmark. This month one year ago my husband get ill. He had it like af flu for perhaps almost two weeks and went to the doctor. She found out that his CRP was 165 and sent him to hospital. After five weeks they at last found out that he was ANCA-P positive and also MPO at 56. His EGFR was 21 and P-creatinin 260, but there was NO vasculitis in his kidneys or other places. The only symptoms was as in the start. He got three times methylprednisolon, seven times plasmaferese and already after two times cyclofosfamid he has none ANCA og MPO in his blood. But still they gave him three times cyclofosfamid and he also got prednisolon going from 80mg a day to nothing for half a year. In January he started to imurel but get sick of it in February. He was without medicine for six weeks and then he got a rituximab 1000mg. When he stopped cyclofosfamid his EGFR was 55. EGFR is still getting better - now it is 75 and his P-creatinin is 98. He still has protein in the urin. We are now unsure about next rituximab - YES or NO? When we read all your stories, we don´t believe how K can do so very well. He is 61 years old, and he has just the same energy - working full time, taking care of our farm every day, putting on new roof on 500 kvm for example. Two month before he got sick his EGFR was perfect (we know because he was doing a medical experiment for a big prostata). We have after that seen that this medicin (Betmiga) is under restriction in Denmark because of perhaps giving very high pressure of blood. Have any of your ever heard a story like this before? K is now only eating a tablet for his high blood pressure. We have tried to say this to the doctor, but she says there is no connection, but she has never written Microscopic Polyangiitis in the journal but she call it that for us. Sorry this long-long and clutter message. Hope to hear from many of you..

[Hidden]

Hi,

I am not sure if it's because of the language barrier but what I take from your story is that your Husband was very unwell and had failing kidneys. His blood tests pointed towards MPA and he was treated for it with immunosupressants and now is doing much better.

When you say there is nothing in his kidneys do you mean the biopsy of his kidneys were negative? Unfortunately sometimes biopsies do produce false negatives.

The fact that he has improved after treatment means the treatment is working, not that the diagnosis was wrong. Patients with MPA tend to do better than patients with other forms of Vasculitis as it doesn't relapse as often. The clinical trials show that 2 years of Rituximab is optimum to maintain remission.

We are all individuals and respond to treatment differently. These groups are a godsend to many but I would be aware that people in them tend to post because they are having problems. I suspect there are many patients like your husband that do very well after treatment, I personally know a few that run marathons and do triathlons etc despite having Vasculitis.

I hope my comments help.

[sealives]

Hi Lima51

I had a similar situation to your husband - diagnosed ANCA positive EGPA vasculitis in April 2016, aged 57. Up until then, very fit and healthy. Symptoms of flu (aching joints, temperature, shivering, loss of appetite etc). My Doctor had bloods taken and my CRP was 165, creatinine 122, eGFR 53mls/min. In was admitted to hospital and 11 days later they diagnosed EGPA vasculitis and I was started on high dose of Prednisone and cyclophosphamide. I had a renal biopsy which showed necrotising glomerulonephritis. I took the Cyclo and Pred. for 12 weeks and started to feel better. I was then moved onto Azathioprine which made me very unwell. For 6 weeks I took nothing other than Pred. I was then given Rituximab (Dec 16). This worked reasonably well for a few months but by April 17, I was starting to feel unwell again. In June I had another Rituximab infusion and this time it has been much more effective. Like your husband, I am lucky and am able to accomplish some quite physical tasks (cycling, sailing, walking), but I can easily overdo it and pay the price the next day feeling very tired.

I have done a lot of reading about vasculitis and in general, it seems that the treatment is very similar for all the different variants of the disease. My current medication is now tapering Pred (currently 10mg) , a blood pressure tablet and a calcium tablet. My CRP is currently 1. However, despite normal blood counts, I do still have symptoms on a daily basis but I try and not let them stop me doing what I want to do.

I hope this helps you and your husband in some small way.

[Lima51 in reply to sealives]

Thanks for your answers. K has only felt sick for two weeks in the very beginning. Since that every thing has felt AS before sickness. F ex after cyclofosfamid he went directly back to work. He never -yet- has been sick or tired so we are very happy about that.

[Jeffo in reply to sealives]

How many Rituximab have you had to date. I will have my third in June. I also have to be "pulsed" with three doses of1000mg prednisolone IV each time which isn't very nice. I am down to 30mg pred cureently with a face like a melon. Hopefully a couple of months will be back to normal😆

[Jeffo]

HiLima51, your story sounds almost exactly like mine. Was diagnosedcas a result of a prolonged upper respiratory problem. GP thought it was Rhinitis initially. Was referred to ENT and c ANCA was done with pr3. Diagnosed as Wegeners Granulomatosis with Vasculitis. Treated with methotrexate by a rather unknowledgable consultant. 6 months later collapsed and was admitted to hospital with pneumonia. Referred to a Rheumatologist and commenced on cyclophosphamide fo 3months. I too have an enlarged prostate and high blood pressure. I also (following biopsy) have 10% kidney deficit due to vasculitis so you should explore this. However don't concern yourself regarding creatinine levels, they often fluctuate. My renal specialist is relatively happy with mine between 10 -127.😀 I am 67yrs old, somewhat fat with steroids but hopefully reaching the possibility of remission due to Rituximab. Will be having my third dose in June. I am off Methotrexate (thank goodness) and therefore my immune system is starting to reactivate. Keep me informed of progress.