Vasculitis UK
5,604 members5,088 posts

How many years have you got vasculitis?

Hello everyone, to get an idea of ​​the outcome of these diseases I would like to know how many years you have been diagnosed with Vasculitis, what kind of vasculitis you have and your considerations about the greatest difficulties and changes in the quality of life. I saw a similar survey in another group and it was very useful because in the end I think only patients can be real witnesses of themselves. My son is 12 years old, has MPA and is doing quite well excluding diarrhea, fatigue and a glomerunephritis from the disease.

I often think about the coming years and what will happen, but especially to his life. Your direct experiences are better than any advice

Thanks in advance to those who want to answer

good day from Italy

36 Replies
oldestnewest

Ask for Homocysteine & Methylmalonic Acid to be tested.

Reply

On 12 of April we have a control and I'll ask to his doctor for Homocysteine & Methylmalonic Acid.

Thanks for the advice

Reply

I think you'll get a very mixed set of responses. There are lots of different vasculitis types, and what applies to some, and some patients in particular, won't apply to your son. Even MPA patients can be very different. You need to talk to his consultant about likely prognosis / future.

As for me I fell ill in 1994 aged 22 with what would be diagnosed in 1997 as cerebral vasculitis, in a very MS-like form. There can be many years of delay before diagnosis in vasculitis cases, and particularly in the neurological type I have. My story is online at

vasculitis.org.uk/living-wi...

I am still very disabled years later, but happy, and pretty stable at the moment. Doing better than I thought I would for a long time. Other people can fare vastly better than I did. Diagnostic delay does not help!

4 likes
Reply

I agree. It is "rare" because people are not getting diagnosed easily. I cannot deny that I am not bitter if I'm honest. The way I was treated over so many years was just "horrendous".

There was a recent thread re. this emotional subject on SLE hub.

Reply

Thanks Viv,

you're right: everyone is different and the prognosis depends on numerous factors. But I also think that some common data can be found also considering that the treatmenta are very similar. Also I made the idea, informing me a bit ', that the vasculitis do not necessarily progress towards the worst and that tend to stabilize over time compared to other autommune diseases.

Moreover, unfortunately there are no long-term studies on the outcome of primary vasculitides and the testimonies of those who have been coping with them for a long time are precious as well as the advice on everyday life.

kisses

cinzia

Reply

Hi, I was diagnosed with Urticarial Vasculitis 18 years ago when I turned 40. I have had very difficult time finding the right medicine and after lots of ups and downs I am now to a degree stable. I think specialists in general go with standard treatments (all relating to suppressing immune system and therefore messing up one's overall health in the long run). All medicines used in Vasculitis in the long run will have major side effects. In my case, I had a stroke on my brainstem three years ago after Rituximab treatment, which I really didn't want but had to after being told that I was very likely to develop Lupus. I had refused this treatment for 5 years and my doctor was getting agitated...and I ended up being right that it was not for me. But the upshot is that I paid for me with lost years and he didn't. I didn't even get an apology! Such is life. But I have recovered quite a bit from stroke (doing tons of alternative treatments as doctors really don't have medicine for stroke!). I weaned off most pills they wanted me to be on for the rest of my life. There are new methods of treating auto immune conditions but they are just not yet much available due to budget and it always takes time for new treatments to be widely practiced. I am still waiting and looking for a new and less damaging treatment and a treatment that normalises and strengthen immune system not the other way around. Since your son is still very young, I think he has a better chance. And you have SUN in Italy! Natural vitamin D is so important along with bright and positive days. Hope this helps even in a small way.

Best wishes to you and your son from London!

1 like
Reply

Thanks Paprika60 for having found the time to share your story of which I share two opinions. I think that, once the disease is in remission, we must not resign ourselves to taking the prescribed medicines but look for natural alternatives that can help to decrease at least the doses. I also think it is important to discuss therapy if something disturbs us or if we fear the consequences of treatments. My son is reducing cortisone and in a few months even Myfortic. Meanwhile he takes vitamin D, A and E, nettle seeds for the kidneys, Kuzu for diarrhea and vitamin B12 and probiotics....He's pretty good and I hope he has no relapse. I would like continue with more natural treatments to take the infiammation under control. I would like to discuss the benefits of mycotherapy with his doctor in the near future.

But most of all I hope that in the future they will find a cure for these diseases (autoimmune in the case of my child).

Do you know mycotherapy? Which medecines are taking now?

Best wishes to you from Italy :-)

Reply

I used to take Mycophenolate Mofitil (MMF) but upon my insistence my doctor agreed stopping (it made me so unwell) 6 months ago and I have been feeling better. I am currently on 2 daily dosage of 200 mg. of Hydroxychloroquine (anti-malarial drug which has been around a long time and has less side effects) and 2 mg. of prednisolone (down from 10 mg. over 3 years!) and aspirin (to prevent further stroke) and that's it!!. I changed doctors three times until I found one who agreed to help me wean off steroids. The other two insisted that I keep up with higher dosage for the rest of my life. Of course, it is a cheaper option but terrible for long term!

I am on remission in that I have not had any urticarial attack on my skin (which was truly maddening painful and itchy all over my body) or swelling of joints (I used to wear three different sizes of shoes for the swelling). My NHS doctor gave me two treatments (four months apart) of IVIG (which is an antibody treatment taken from human immunoglobulin rather than synthetic as in Rituximab) but it is very expensive so he cannot provide this again until I get seriously ill. For alternative therapies, I have had help from naturopath, acupuncture (weekly for 2 years), acupressure massage (weekly and still on). I take calcium, magnesium, Vit.C &D, Quercetin, CoQ10, Curcumin (1 gram per day), Omega fish oil. I also take zinc with Vit.E during the winter season. I have very healthy diet (mostly organic fruit and veg and all organic meat), fermented food (home made Kimchi rather than probiotic) and I have become more easy going with Paleo diet (which I was on for 8 months strictly but since eased off). Phew...sorry for the long listing.

I do Yoga almost daily, aromatherapy massage on myself daily, do lots of breathing exercises including chanting. I tried quite a lot of different alternative therapies including hypnotherapy but lately I have become far more independent and less desperate. And I have a fast walk for an hour everyday except when it is absolutely miserably wet (which is more harmful for me).

My main issue presently is lack of energy (fatigue) and also unclear sensation (brain fog) and half of my body still not functioning perfectly sensation wise (due to stroke but I have regained 80%) and I also have neuropathy on my feet and lower legs. I generally suffer from bad blood circulation so I try to move around often.

No I don't know what Micotherapy is but will google it now. I so envy Italy's beautiful weather!! You are so lucky to live there. My doctors always say UK weather condition is bad for my condition...but I must make the most out of what I have for the time being.

I am going to Cilanto with my husband this June so I will have a bit of breather!

Thank you and best wishes to you too.

1 like
Reply

Cilento? I've never been there but I know that it's special . We Live in North of Italy.

Thank you for your answer

Reply

"No I don't know what Micotherapy"

What the lady is saying is "Mycofenerate M./MMF" therapy as far as I understand.

A brilliant post. Thank you.

Reply

Hi anothermember

for Mycotherapy I meant "Mycotherapy deals with the use of the valuable ingredients of medicinal mushrooms in order to treat different illnesses."

but it could be help only in certain conditions and not if you are taking immunosoppresant

have a good day

1 like
Reply

Oh, I see! :) Thank you.

I did try this "mushroom" therapy for immunomodulatory effects and a number of others myself a few years ago when I had no treatments. No effects to report, but yours could be different. Thank you for sharing.

Reply

Hi Wizzi. If you look at my profile i have a lot of similarities with your son, except for age of course. Viv is spot on with her evaluation. Vasculitis symptoms and prognosis are frustratingly variable. The main things that effect his long term quality of life are (my personal views only):

The type of Vasculitis and it's severity

Time to diagnosis to avoid permanent damage

Response to treatment

Collateral damage done by medication

Tendency to flare or relapse

With that last one only time will tell but I believe MPA generally tends to relapse less than some other types. Someone may correct me on that one. Hopefully in time it may be possible for your son to come off the medication but I would be very careful of alternative therapies. Hope this helps. Chris

2 likes
Reply

Thanks Chris. I also think that my son's story is similar to yours. He is in remission from the second month of the treatment (I understand) because mpo value are in range but they keep on giving him prednisone (now is 15 mg one day and 5 the other) and mmf . Kidney make me feel scared because he's at the second stage of the renal cronich desease and his biopsy was bad . Doctor is not able to tell us what could happen in the future with his kidney. He's taking 5 mg of Ramipril a day. What about you?

Reply

It did take a while for my Kidneys to repair. There were traces off blood and protein in my urine for about two years after initial treatment. My kidney function is now fairly reasonable considering what it was. I was on Ramipril for a period but my blood pressure is now just about within tolerance without medication. The usual maintenance dose for prednisolone, once you are in remission is generally about 5 mg per day, so he does seem to be on a high dose.

Reply

Thank Chris,

kidney disfuction brings problems with blood pressure. My son hasn't now problems with blood pressure but the doctor told us that Ramipril is conservative and protective for kidney.

What I've understood is that his MPA was very severe with kidney that's why at first they spoke only of Gloemrulonephrite.

After one year he still has 600 mg of protein in the urine :-( and his urine are very foamy.

Relative to Prednisone, he took in the first three mounth high introvenous dose but now they are decresing 2,5 mg a month.

Sorry for my english.

How are you in general after 5 years? Fatique?

have a good day

cinzia

Reply

The fatigue seems to come and go but if anything it has gradually improved over the years. Some days you don't feel like doing what you had planned to do but on the whole I'm generally able to get on with life.

Glomerulonephritis is what the vasculitis does to the filtering units in the kidneys. Chronic damage can not repair itself but acute damage can. That is what my doctor told me. Your son is likely to have a combination of both. The main thing is his kidney function gradually improving and is he definitely in remission? Your English his fine I understand ithat perfectly.

Reply

My son's doctor keep on telling me that the illness is in remission. These are the value (what's your opinion?

ANTI CYTOPLASM OF NEUTROFILES

Antibodies to Myeloperoxidase SERUM 3.60 IU / mL [0- 5.97] CLIA

Antibodies to Proteinase 3 SERUM <0.6 IU / mL [0 - 5.0] CLIA

but with another method (IFA) l'MPO vas weak positive.

he has a cronic demage in the kidneys, but doctor hope the ricover again thanks to the teraphy. Is it possibile?

Reply

I think you are referring to the ANCA antibody reading. The readings don't mean anything to me but it is not something you should consider in isolation anyway. I remain ANCA positive but I'm in remission. Occasionally the kidney damage is so bad you have to go on dialysis but as your son is not on dialysis (you haven't mentioned it) then there should be some expectation that the kidney function will improve over time. This is usually the case.

Reply

Thank you so much Chris for your patience and help. Lorenzo is at the second stage of chronic kidney damage. This means that if the disease does not attack the kidneys again and proteinuria stabilizes, he should still have several years of "autonomy". but there are many "if" in my sentecnes and the doctors can not make predictions.

Remission remains for a mistery. Anyway, the values ​​seem negative and he is quite fine. I hope it goes on like this ...

ciaoooo

Reply

I was diagnosed with MPA in January this year, so only 2 months.

Reply

My son one year ago. I've read from your profile that you have also RA . Sometimes I feel depressed because i think that vasculitis could also be the first of others autoimmune illness. Hope I'm wrong. That's why i would like to know if there's someone who has had only primary vasculitis for a long time .

Reply

I had RA first and it has actually been in remission since mid November, weeks before the MPA attacked me. My testing also showed something I did not know I had: IgA deficiency that is genetic. So which came first? And since my 20's I have known I had a positive ANA but not why. Then dx with RA in 09 and MPA in January.

The more I read the more I believe it is the immine dysfunction that is at the root of it all, do I am trying to learn more about that.

Your son will experience the benefits of new medical breakthroughs in immunology and fir vasculitis and this vasculitis MPA.

Learn all you can to help him get the best help.

Reply

Thanks Patty for your positive view. I'm trying my best to help him and hope for all of us that the future will bring a cure

Reply

Hi, my husband has MPA since July 2016. Once diagnosed and treated he got into remission quickly but the damage to his kidneys was too severe and he has been on haemodialysis ever since, and is now awaiting transplant.

I saw this article today on another Vasculitis group, which might give you some reassurance/confidence that things are moving in a good direction with regards to treatment and outcomes

ancavasculitisnews.com/2017...

Reply

I didn't know that vasculitis group. I'm going to follow it . Thank you very much for the good news.

I'm trying to be positive every day for him but sometimes is very difficult

Kisses

Reply

Hi I’ve had GPA since I was about your sons age but I wasn’t diagnosed until I was 17, for a few years I had trouble getting on with some of the meds and being an over dramatic teenager (and most likely being a bit depressed as a side affect from the steroids) thought this was the end of the world as I knew it! But now I’m 25 and I’m doing my dream job whilst travelling! I’m currently travelling around Italy at the moment! I definitely would not have believed I’d be doing as well as I am now, but once you find what meds work best for you and if you keep up a positive attitude then you’re quality of life can be just fine. I know I am very lucky and not everyone will feel the same, but there is a lot hope and a lot to be said for determination and a positive outlook on life :)

2 likes
Reply

Hello Dramaticicharlie, yours is a beautiful story that fills me with hope for my son's future. Are you still taking medications? Have you had severe desease to your vital organ?

My son is pretty well now but his blood tests are not always in the range (cholesterol and liver for example ) and his kidnies have had a bad demage.

But his doctor says that he's happy about the results of the therapies and i'm trying to feel positive.

Thanks and i wish you the best for your job

Reply

Yes I am still on low doses of methotrexate and steroids. My kidneys and lungs were damaged but I find as long as I look after myself, be careful of what I eat and drink I do pretty well.

I’m so glad that your sons doctor seems positive and happy with his results.

I hope you both stay positive for the future!

Reply

I was diagnosed with MPA as well at 12 with kidney involvement. What makes my case interesting from others is that I was actually diagnosed with HSP, another form of vasculitis, at the age of 9. Despite the coincidence, it still took nearly a year for the MPA diagnosis. I suffer from pretty extreme joint pain, and although I am considered to be on maintenance therapy, I still find myself vomiting in pain too often. I have used prednisone, Cellcept, Azathioprine, and Rituximab as treatments, but sadly the prednisone caused quite a bit of damage so be careful with your son. From the prednisone, I have had problems with my adrenal glands, weight gain, cataracts, hair loss, headaches, and more. Day to day is quite difficult and I have been diagnosed three years, but I still don’t think that I have came to terms with my illness. I have infusions every four months, and next week is my next one. Although Rituximab is typically every four months, for some reason after about three, my pain comes back. Sadly, there aren’t too many options for us.

Reply

Hello at first my son had to take a lot of cortisone (today 15 mg a day and 5 another) and I'm worried about the possible consequences. But it seems that they could not do anything else to recover renal function (60% GFR today). Renina is high and I do not understand if my son has problems with the adrenal glands or not. And he has also developed a slight osteopenia that the doctor says can come back but I would not be sure.

I hope they do not have to increase the doses in the future. In case of exacerbations how do they work? Today he is in remission and takes celltech which also gives him diarrhea. They are all non-disabling things because he goes to school, gymnastics and in general it is good, but in the future I do not know what could all the medicine cause.Thanks of the answer: I wish you all the best because the young people should not face all this but if it happens they have to take advantage to become strong and resilient. A big hug

Reply

When I was first diagnosed, my main doctor was a nephrologist that was pretty uneducated on vasculitis. She actually told me that I was her first patient, yet she took control. I was supposed to be on prednisone for 6 months, weening from 60mg; however, I was on them consistently for two and a half years before she sent me to another doctor for another option. I think that the reason for my additional side effects are for this reason. With your son, just be confident in his doctors. When diagnosed, I ended up quitting all my extracurricular activities, and last year was healthy enough to coach a team with a friend. Right now I’m pretty knocked down with the stomach flu. I honestly think that I would be fine with the vasculitis, but it’s all the extra stuff that really brings me down. I have been on antibiotics four times in the last year and half for numerous infections and I haven’t lasted longer than a month without a cold in years. A lack of an immune system gets to be quite consuming. You will be glad to know that I do have sort of a normal life outside of my home, and I have a job, friends, and challenge myself in school. Remember that reality with this disease has much improved in the last few decades, and more medicines continue to become available. Hugs

Reply

Yes I'm very happy that you have a normal life :-)

thank you

Reply

I’ve had it,diagnosed for around 4 years but am sure I was undiagnosed but had the GPA variant for around 6 before that. Apparently the medications given me for colitis are strikingly similar to the ones for vasculitis so probably saved me from the worst of things.

It’s so difficult at times like bank holidays. I have a huge swelling in the inside of my lower lip and cheek but can’t get to see anyone unless I go to A&E and I don’t think they’d be happy if I went in with this even though it hurts so very badly. I’ve been stung, while abroad, by an hornet and it made me nauseas in how much it hurt. This is like ten times that

Good luck to your boy and god bless you and your family

B

Reply

Thanks Balderick. Reading your answer a question arose that I pose to everyone and that could ease our anxieties a little. Do all the small and big illnesses that a person can have must be due to vasculitis? I understood that if a cold or a disease does not pass despite antibiotics and various treatments then it is appropriate to investigate. But until then we should be calm. And then: i think that anticipating or keeping inflammation low with natural cures is a good idea. What do you think?

hello and good luck to all of us

Reply

I have had PAN since 2006 or at least that is when it was correctly diagnosed. My GP has now put antibiotics on my repeat prescriptions, although (touch wood) I have never had to get any. As the antibiotics I have taken have been issued by the GP &/or hospital. But I will get some for my emergency pack the next time I go travelling. As I think it is a wise precaution to have an emergency pack with me. It contains antibiotics (of course) as well as Dioralyte, Imodium, Glucose tablets (I am diabetic, but sometimes I go too low), pain killers, hand cleaner and anti bacterial wipes.

Reply

You may also like...