Immune system

[Retire3603]

I was diagnosed with anca vasculitis mpa in May 2017. I had the steroid cyclophosphamide treatment for six months than two years of azithioprene. I am not on any vasculitis meds now and was wondering if my immune system is still compromised. In other words does vasculitis permanently damage your immune system or is your immune system compromised only when the disease is active?

[Chris-Bromsgrove]

Hi, it's great to hear you are actually off vasculitis meds. The vasculitis doesn't damage your immune system. It should have been perfectly normal when you had active Vasculitis apart from the fact that it included the rogue antibody- ANCA. It is the Cyclophosphamide and Azathioprine that suppress your immune system and make you more vulnerable to infection. I'm not sure exactly how long you have been of the Aza but your immune system should be getting back to normal. That's good news but the fact that you have had Vasculitis I believe it can still make you vulnerable, especially if you have kidney or lung damage. Chris

[Retire3603 in reply to Chris-Bromsgrove]

I've been off aza for a year. And yes I have both kidney(ckd stage 4) and lung issues. Also it affected my eyesight, occular stroke in my left eye and retinal vein occlusion in my right eye which required monthly injections into my eyeball to keep under control.

[Hidden]

It's the drugs that makes your immune system compromised, not the disease. I have Rheumatoid Arthritis and Rheumatoid Vasculitis. After being precribed high dose Pred (couldn't have cyclo as I'd recently had that as part of my cancer treatment) Now on 5 mg Pred, 7.5 mg MTX and 20 mg Leflunomide (for RA) But my vasc is flaring again. I don't want to increase Pred as I have Osteoporosis with 4 vertebral fractures. So I am shielding (on instructions from he NHS and government) My husband is over 70, so he too is shielding.

[Halebopp]

I was diagnosed with Anca Vasculitis MPA in Aug 2014. Was on prednisone for 9 months, cyclophosphamide for 6 months, & azathioprene for 3 1/2 years. Most damage was to my kidneys - I’m stage 3b. I’m also in the U.S. since we have very similar histories, I’m going to “follow” you on this website.

I have been off of all Vasculitis medications for 2 years & doing well. My immune system seems to be strong. I get some seasonal allergies, but haven’t had a cold in a couple of years. I get my flu shot every year & am up to date on the pneumonia & shingrix vaccines. When lab work is done, my white blood cell count is within normal, but on the very low side of normal. This is probably due more to the kidney disease.

All of this being said, I still perceive myself as a high risk person & have been sheltering in place for at least 4-5 weeks. It’s a very lonely Easter. I have a strong fear of having my autoimmune disease flare or having my kidneys fail, so the sacrifice is something I feel I must do.

[Retire3603 in reply to Halebopp]

I feel the same way, I'm just a short time away from dialysis and am concerned about leaving the home for fear of contacting covid. Lately for the past month I am having severe bouts of diahrea. As soon as I eat anything it just comes right back out. GP can't find anything wrong and put me on probiotics. I think there is something else going on. Also I have high blood pressure and am on several meds to control it, but am now finding that with any kind of physical activity my pressure drops significantly as to where I am dizzy and have to lay down. Fatigue is also with me every day no matter what I try.

[cedric in reply to Retire3603]

I had a bout of Siberia lost weight was admitted to hospital mine was colitis am on the mend now putting weight back on

[Halebopp]

It sounds like you need to keep working with your doctor on those issues. All medications have side effects & affect everyone differently. I’m not currently on any meds except thyroid & glaucoma meds.

I too, have the ongoing fatigue. The kidneys have a hormone that produces red blood cells & with kidney disease, this production is affected. I believe this has something to do with the fatigue. My doctor has me take iron supplements & this keeps my red blood cell count just within the normal range.

[cedric]

I I vasulitus cryglobinanemia and poor immune system I am taking azathioprine for vasulitus a d ivg for immune system used to go every 3wks because of what's going on I have extra bottle then go go every 5 wks