Vasculitis

[Dineshbothra123]

Hi I just got vasculitis in may 2017 initially I thought it was pneumonia but later on i got admitted doctors told I have avelour heomarroge in which u get bleeding headaches joint paints etc I have a got 7 session plasma exchange for ten days n m now on immunosuppressant drugs ,,is this disease dangerous, can I live longer please tell me more about it

[John_Mills Volunteer]

Sorry to read this.. Do you know what type of vasculitis you have been diagnosed with ?

[Dineshbothra123 in reply to John_Mills]

Doctors say it's daf- diffuse avelour heomarroge with anca positive I'm on immunosuppressant drugs omnacortel and endoxan with other drugs ,,I have got plasma exchange for 7 sessions now on these drugs ,,how long would the drugs go on should I be hooked to these drugs I had blood issues too so they put me on iron increasing doses and medicines ,,do u think will it relapse and I have history of leg pains joints pains swellings and I have psoraises too ..I was a smoker and drinker sir please guide me

[AndrewT]

Dear Dineshbothra123,

I'm afraid that, with the limited information that you have given- probably all you know, at the moment- it is very difficult to answer you exactly. That said let me try to give you some 'Useful Comments'. Firstly, and you may not have actually realised this, it is Nearly a YEAR, since you first fell ill.....With a VERY Dangerous Disease! Make no mistake, this is VERY good news, from your Point Of View.

I have no 'Magic Wand', or Panacea Of Life, however, what I DO have is- Over Twenty Years, of living with a 'Similar' Condition. You don't say were you are from, so it's difficult to advise you as regards 'Treatments', though, from what you say, you do seem to have a Competent Doctor/Consultant.

(My History, very briefly is 'Uncharacterised' ANCA Vasculitis, Kidney, Brain and Heart damage. A Kidney Transplant, in July 2013, and an Ongoing 'Drug Regime- overseen by My Doctor and Hospital Consultant(s).)

Can I assure you Dineshbothra123 that we are all 'here', for you, and will try to Help as best we can. Have you looked at 'Vasculitis UK', if not I would recommend it- it is our 'Sister' organisation.

It only remains for me to say that you are NOT 'alone', so please do contact us again.

Warmest Wishes

AndrewT

[Dineshbothra123 in reply to AndrewT]

I'm from India ,,doctor say it is diffuse avelour heomarroge with anca positive

[Slem2]

Yes, Vasculitis is a dangerous disease. It can cause serious damage to major organs if not treated early. The cause isn't known and, as yet, there is no cure. However, drugs can put you in remission and hopefully keep you there. There are many types of Vasculitis. Some have a greater likelihood for relapse than others. You need to find out what type of Vasculitis you have to know what you are dealing with and what your options are for medications.

[CarolynReed]

So sorry to hear about the diagnosis and associated challenges you have.

I was only diagnosed in Feb 2018 with GPA vasculitis after 18 months of being unwell and I am so lucky to have the most amazing Rheumatologist who has become my saving angel!! With 36 hours of being diagnosed I was being treated with cyclophosphamide and high dose steroids and 7 weeks on i am having my 4th infusion today and my inflammation markers are decking which shows he treatment is working! Yes the treatment regime is tough, I’ve been in the house for 9 weeks as I have associated lung issues to picking up a bug should be very difficult for me but I am beginning to get some energy back after a horrendous Dec/Jan/Feb. A long way to go but I’ll get to remission and then face the future as I can

Research well and ask loads of questions of your medical team. And as others have said on here we can help as we can.

We all have each other’s best interests!

Good luck

[Dineshbothra123 in reply to CarolynReed]

Does it relapse once we go in remission and m on all immunosuppressant drugs ,,how long should we be on drugs and after having plasma exchange is the disease completely cured ,,my doctor thinks so ,,I have diffuse avelour heomarroge with anca positive

[Slem2 in reply to Dineshbothra123]

Unfortunately, there is currently no cure. The drugs you are being given are to put you in remission and to suppress your immune system to prevent relapse. Sadly, relapses do occur. However, some people relapse more often than others. Your likelihood of relapse may depend on what type of vasculitis you have. You need to have blood tests to determine that. You need to talk to your doctor for specific answers about your condition and get the relevant blood tests. If your doctor is not completely familiar with your condition, then try to find a doctor who specializes in vasculitis. These doctors are often rheumatologists or nephrologists.

[Dineshbothra123 in reply to Slem2]

Once medicines are stopped do the side effects also stop and is the death risk lowered or higher after stopping of medicines

[Slem2 in reply to Dineshbothra123]

Most side effects of meds go away after meds are stopped. However, some meds have damaging effects. For steroids, such as Prednisone can affects your bones and cause osteoporosis. Powerful drugs, such as cyclophosphamide can cause cancer, which is why there is a maximum amount of this drug you can take in your lifetime. However, relapses can and do occur even while on these drugs. Once you are off them, you will likely be put on a maintenance drug to help reduce the chance of relapse. I would strongly advise you to discuss all of your concerns with your doctor and ask for a referral to a vasculitis specialist if necessary.

[Dineshbothra123 in reply to Slem2]

Hello Slem..since past few days i got red marks in thighs and legs..and they are bigger..what does this mean..is my vasculitis back ??