MPA

[tamidi]

Did any of you have had experience with elevated P Anca after 6 years of remission of Microskopic polyangiitis.

Antibodies have been elevated for 8 months without any clinical signs of disease recovery.

[Christophene47]

Hello tamidi,

Having been in remission for 6 years, maybe you are in a position to respond to my post?? Sorry to hear P-ANCA levels up, but happy to hear you have no symptoms. If you read my post, you can see I have not had that experience and need some thoughts about remission myself. I do hope you stay well, notwithstanding P-ANCA titre up. It is often said that titres do not accurately correspond with disease activity or lack there of.

It must be worrisome though just knowing they are up. Maybe in your case, ignorance may have been bliss and it would have been better not for you to be told. But if you feel well, stay positive and know that you are well, and have been for 6 years.☺☺☺☺☺☺➕➕➕➕➕➕➕➕ad infinitum...

[xz3sgn in reply to Christophene47]

I was diagnosed with MPO three years ago with impaired kidneys & low level of PANCA about 12 titres. I was put on cyclophosphamide & Predlisone. There was protein & blood in urine. After 4 months the disease disappeared. However I'm on Predlisone 5 mg & Azathioprene.as a maintenance dose. I'm on remission for the last three years but ANCA is still at 8 tribes. Consultant is deliberating when to wean the medication . Any ideas/ comments welcome

[Christophene47 in reply to xz3sgn]

Hello xz3sgn and All,

I have not heard the term "tribes" before in reference to ANCA. Is it the same as titre? 5 mg. of prednisone is not very much and the combination with Azanthopine seems to be working for you. 3 years of remission is a great accomplishment. If your P-ANCA is up, but you are well anyway, if I were you, I would not want to wean while ANCA level is up just in case the elevated ANCA is heralding a return of symptoms. I would want to leave meds as they are in hopes of maintaining remission.

I have been diagnosed with C-ANCA vasculitis with low PR3 titre, but no evidence of lung or kidney issues of a vasculitis nature. A 2nd rheumatologist thinks it's PMR/ GCA because symptoms have caused terrible musculoskeletal pain, feeling very ill, and eye involvement; loss of vision for a few minutes in left eye. Duplex doppler showed that the central vein of the left retina could not be visualized, and therefore a conclusion that it is blocked.

Also having terrible skin marks and an explosion of squamous cell cancers with inflammatory infiltrates , and other marks which may be vasculitis related on lower legs, feet, chest, back . The removal of cancers are leaving scars , like never before. Could be due to effects of Prednisone on skin. Just got the results of MRI of chest without contrast which confirmed a large paraesophageal hiatal hernia which is compressing my left lower lobe of lung, (atelectasis) ,thus explaining my popped out upper belly (look 6 mo. pregnant from the side), and occasional shortness of breath, but no gastric reflux.

My understanding is that , in absence of severe reflux symptoms, surgery is not recommended as these surgeries often wind up with serious complications, especially when mesh is used, but it's compressing my left lower lobe of lung=shortness of breath. ???

I am 20 months into all of this, and have just begun to see a diminution of pain and a significant improvement in my general sense of well being; just in the last week. If C- ANCA was the correct diagnosis, is this the beginning of remission, or if PMR/GCA, has it almost run its course with me, being close to 2 years?? The improvement was as sudden as the onset of symptoms in late August 2016.

I had been advised by my new rheumatologist and a hematologist to stop methotrexate which I did on June 11th, only 8 days ago, but that is what seemed to trigger relief from extreme fatigue and severe muscle pain; I still feel a little "shakey" , could not control my handwriting today, and I think I move a little more slowly, but I am better. I am de-condiioned after years of exercise. Could the tremors of hands , and on occasion , a leg or an arm , be CNS vasculitis or being caused by another problem?

I see my new rheumatologist next week and will be able to discuss these issues which may require a neurologist and a gastroenterologist; also have a tiny growth on upper eyelid; it's so small, I would not be inclined to pay attention to it except for the fact that I had exactly the same tiny growth on the edge of lower lip which did turn out to be a squamous cell cancer which had invaded the interior lower lip. Removed with Moh's surgery with no cosmetic defect. So of course I am worried about my eye.

But this all seems to be getting away from autoimmune problems into skin and mucous membrane cancer, GI and lung atelectasis from hernia, and Neuro problems. Sorry for the long ramble. Anyone with similar situations? But I am feeling better. Fingers crossed it continues.

Any advice greatly appreciated. Getting better, but also overwhelmed again. Thanks for listening.

[xz3sgn in reply to Christophene47]

Hi Christophene,

Many thnx for prompt response . Wish you good health . Yes the unit for ANCA is trites (misspelt by me). If I look back to last three years, the disease existed for first 3/4months. Thereafter the problem had been with lesion on the face that had to be excised.Fungal infection on the nails. Swelling of the feet. These r the side effects of the medication. I have fortunately been feeling fine going for 4 miles walk everyday without any sign of fatigue. Play badminton at times.

On an average our body produces about 7/8 mgs of cortisone so not sure why do we have to take 5 mg if the body does produce itself. May be it is required to those whose adrenaline glands do not produce that much. My activity suggests that my body does produce that much. I read it that 5 mg of prednisone can result into ostoporasis. My bone density scan doesn't show any problem now. I also take calcium D3. The question is

that if an individual has positive ANCA but no corroborative Vasculitis evidence then when/how to wean out medication. I'm of the opinion that medication be discontinued and if the disease surfaces I want to switch over to Rituximab. There

Has to be a reason to compromise with the immune system as it safeguards you against any infection/ threats etc . Moreover long continuation of medicines take their toll howsover small they may be. I would appreciate your response .Eagerly waiting . Thnx

[Tony-LakeDistrict in reply to xz3sgn]

When taking steroids the body stops producing cortisone, as the steroids take over. which is why the reduction of preds has to be gradual so the body can take over again.

Hope this helps

Tony

[xz3sgn in reply to Tony-LakeDistrict]

Hi Tony,

Thnx Tony for ur response.I agree that steroid has to be reduced gradually for adrenaline glands to start producing . Once the maintenance medication is reduced to 5 mgs I think we should gradually bring it down so that body starts producing . I've been on 5 mg for more than 2 yrs with no sign of Vasculitis

[Rosie7may]

Hi tamidi, I too was in remission for 6 years and then my P-ANCA levels started going up, I was eventually treated with rituximab infusions every six months for two years and felt fine. However four months after the last infusion the levels started going up again and continued to do so until I had another smaller rituximab infusion and they came down again, once I had recovered from pneumonia, the norovirus and AT (atrial fibulation) which all happened simultaneously. The norovirus was the only thing that made me feel bad. I feel fine again now with no symptoms.

[tamidi in reply to Rosie7may]

hello

Thanks for your reply.

Have you been on any therapy before the growth of P Anca?

My daughter was diagnosed with MPA 6 years ago . She is 16 years old now. The last 4 years she has been drinking 5 mg of pronisone per day.

The doctor decided to increase her 30mg therapy and introduce Cellcept.

[Rosie7may]

I had no therapy for 6 years after having had prednisalone for 16 months and cyclophosphamide 6 months in 2008/9 before a reoccurrence in Sept 2015. I am generally symptom free during and after treatment. Best wishes to your daughter.

[Rosie7may]

I now have rituximab whenever the levels start to rise, this was 10 months after the last dose, this year ,and am relatively symptom free apart from fatigue especially if I get a cold or infection, which are usually treated with antibiotics. Best wishes to you and your daughter.

[tamidi in reply to Rosie7may]

Thank you.

Best wishes to you