New and in limbo

[Boudica1]

Hi, I just been diagnosed with urticarial vasculitis after a biopsy and am now waiting for more blood test results. Feeling as if I'm in limbo at the moment as I'm new to all this.

[Hidden]

Hi Boudica1,

Welcome to the group.

This is the link to the VUK page on Urtucarial Vasculitis, have they indicated what type you have?

vasculitis.org.uk/about-vas...

Are you seeing a Consultant with experience in diagnosing and treating it?

[Boudica1 in reply to Hidden]

Hi, waiting on the blood test results to come back to confirm which type I have. At the moment I'm seeing the Gastro Consultant re abdominal pains had the scope with biopsy's in the colon and going soon for the one going down into the stomach. Reading up on the condition myself and along with other things going on with me it look very much as if I fall into the HUV or HUVS group but won't know until the blood results come back. The skin clinic have said they no longer need to see me as the only signs on my skin are a few red spots on my back that like to hang around and I'm already on a high dose of steroids for over a year. Hence the limbo what happens now, who do I see and do I just go to my GP?

[Paprika60 in reply to Boudica1]

Hi, I am very sorry to hear of your diagnosis as it is a difficult one but at least you have found this website and get tips and help hopefully. there seems to be more Urticarial Vasculitis diagnosis in the last few years. I have had HUV for the last 17 years and when mine came up at the age of 40, it was very rare and there was little info in the internet. I have been with three different hospitals with different specialists in London and am now finally with a very good specialist. The important thing is to find a very experienced specialist as HUV is very rare and not all doctors know how to treat effectively, I don't think. I have not come across a GP who has any knowledge of HUV and what is more important is that your GP is good at referring you to the right dept. Hopefully your specialist will find the right medication (non steroidal) and taper your steroids down slowly so that you can discontinue in the long run. During the last 17 years it took me 7 years to wean off daily dosage and then some years back had to get back on it and now I am down to 2 mg taking four years. I have gone through all the regular immunosuppressants such as azathioprine, dapsone, methotrexate, MMF and etc but have been on Hydroxychloroquine (anti-malarial) which seems to help for the last three years and I think this has helped me to wean off steroids. Steroids is never a long term option. There is also various antibody treatments that can be considered. Stay strong and arm yourself with various coping methods -both physical and emotional.

Sending all best wishes. Big hug.

[Hidden in reply to Boudica1]

Hi,

I think Paprika has said it all!

If you let me know where in the UK you live hopefully I will know who your nearest specialist is.

Rare disease is a game changer, the Consultant you see is so very important to doing well.

My e mail address is [e-mail] if you want to get in touch.

Best wishes

Lynn

[Boudica1 in reply to Hidden]

I'm in Rugby. The GPs have been good this last few years with the amount of bloods I've had that all came back negative for the things they tested for. Chest x ray came back COPD. Kidney pain and blood in urine sent for CT scan that came back clear. Rash on back came back U.V and waiting for the bloods from that diagnoses. Abdominal swelling and pains sent to the Gastro Dept., camera's and biopsies happening there. To cap it all cramps and pain free spasm's in both feet. Heavens I sound like a right moaning mini.

[Hidden in reply to Boudica1]

I think your nearest big hospital is Coventry. There is a nephrologist there called Dr Andrew Short who has a special interest in Vasculitis and has a joint clinic with Rheumatology.

Your other option is Addenbrookes Hospital in Cambridge. They have a dedicated Vasculitis clinic ( the largest in the UK ) which is headed by Prof David Jayne.

As HUVS is so rare it’s really important you are seen by someone knowledgable. A CT scan won’t show if Vasculitis is affecting the kidneys ( only a biopsy will ). Unfortunately a Gastroenterologist won’t have the necessary experience either. It’s important that the extent of your disease is mapped and that they check your complements and anti C1q etc as well.

I would ask your GP for a specialist referral to Addenbrookes or similar.

Best wishes

Lynn

[Boudica1 in reply to Hidden]

Thank you for that information, I'm seeing my GP later this week so hopefully will start to see the right people and get the correct treatment as my kidney is playing up again. Is there a urine testing kit I can buy to keep a check on blood in urine?

[Hidden]

Amazon sell urine dipsticks for under £10 I think.

If your GP is good then ask them to phone either Coventry or Addenbrookes for advice / make urgent referral and hopefully you won't wait long to be seen.

Good luck and please get in contact if I can help in any way.

Lynn

[Boudica1 in reply to Hidden]

Thanks again, just found the Amazon dipsticks with the one the NHS use. Mind you sometimes I don't need to test the urine as you can see there's blood there. Will have a good chat with GP on Friday. Thanks again for your help and understanding as I must admit at times I felt like a fraud constantly going to and fro to the GP with various complaints and the blood test and CT scan showing clear for what they are looking for. Maybe now we can somewhere.

Chris.

[Hidden in reply to Boudica1]

I think it’s knowing what tests to order!

CT scans of the kidney don’t show up Vasculitis as the damage is on a cellular level.

COPD is certainly a feature of HUVS.

It’s important to view the patient and symptoms holistically and have the clinical curiosity to put them all together. Unfortunately medicine is becoming increasingly specialised with Dr’s looking at their own “ bit “ and not looking at all symptoms together.

Now you have a diagnosis hopefully expert treatment will improve things and prevent further damage.

[Boudica1 in reply to Hidden]

Hi, I know when the kidney first started to cause problems the GP automatically thought kidney stones, hence the scan and as the abdominal pains increased sent me to the Gastro Dept. But as most if not all symptoms appeared within 12 months of each other I had wondered and even asked if there was an underlying cause and if they were linked in some way but got a blank look back.

It was the skin biopsy that showed the U.V, in fact they took one of the spots from my back. Its only when I looked up what it was and also saw the other problems listed as well that the penny dropped as to what we may be looking at.

You are right though Dr's do only look at their own "bit" and don't take into account other symptoms else where.

Hopefully now they will start to join the dots or in my case spots together and make sense of it all.

[Boudica1 in reply to Hidden]

Went to GP re., kidney pain urine still showing blood and asked if its link to U.V. At first she was not sure, then checked blood results from tests carried out by the Skin clinic. Much rapid researching by the GP and double checking blood results, she thinks they are as it came back ANCA pos., and is now doing a lot of reading on the matter. GP has referred me to urology for tests to determine any damage to the kidney's and to check there are no other nasty's lurking. As the skin clinic said they are sending me for more bloods and an appointment in 2 months, the GP thinks it best to follow protocol and give them that 2 months.

[Hidden in reply to Boudica1]

Hi,

If you are ANCA positive and have blood in your urine then you need to see a Nephrologist ASAP, not a urologist!

Urologists are surgeons, Vasculitis is a medical problem. Urologists don’t have the knowledge and experience to deal with this. I can’t emphasise this strongly enough.

[Boudica1 in reply to Hidden]

I understand where you are coming from, I'm only being sent to Urology to make certain there is nothing else going on and the bide time for them at Dermatology to get the act together. But at the moment I'm stuck between the GP who has to follow protocol and the at Dermatology. GP is doing some rapid reading and researching at the moment as she has never come across this before. At the moment I can only go by what the DR's are saying/doing. Like I said I'm new and in limbo and don't have a clue who does what or when but the GP has found out about the specialist at Coventry and hopefully will check with him as to what sound be happening. Don't get me wrong, I AM AFRAID AND WANT THIS SORTED ASAP. The GP is only sending me to Urology to make certain there is nothing else going on and to give the skin clinic time to do what they say they are doing.

[Boudica1 in reply to Hidden]

Sorry If I came across sharp, I do understand what you are trying to tell me but at the moment I'm stuck between a rock and a hard place. The only reason I'm able to have this discussion at the moment is that most of whats going on with me seems to be going through a quiet phase and I'm able to communicate and not feeling constantly tire and out of focus. On top of this I am a carer for my husband who has Chronis Rhuematoid arthritis and Rayaulds, how-ever its spelt and a daughter with an unplanned pregnancy with a possible Downs baby. I really have no idea what to do or how to go about this and am at my wits end with the whole lot. Sorry to spill all this out to you. X

[Hidden in reply to Boudica1]

No need to apologise, I am sorry for coming on too strong.

I understand in a way where your GP is coming from, haematuria ( blood in the urine ) is usually investigated as a matter of urgency by urologists, I believe the protocol states you must be seen within 2 weeks as the rule out is cancer.

Your situation is obviously very different to this as you have a positive skin biopsy and it seems like a positive ANCA which is an auto antibody associated with Vasculitis. It would be unusual for HUVS to present with a positive ANCA but all the auto antibodies can cross react.

Here are the evidence based EULAR guidelines for ANCA associated Vasculitis

ard.bmj.com/content/annrheu...

It might be worthwhile flagging them up to your GP and asking him to get in contact with Dr Short in Coventry if only to put everyone’s mind at rest.

I would be very honest with your GP and tell them how worried you are. The guidelines state that ANCA associated Vasculitis needs timely, expert treatment but also that all the mimics need to be ruled out, in many ways it’s not at all clear what is happening with you.

[Boudica1 in reply to Hidden]

I do understand what you are telling me. I have a GP who has never come across this and was rapidly trying to research as we were talking and is now doing some serious research as to what this is and how or what to do. I can only leave it up to them to find things out and maybe put certain things to them. The only reason she has sent things on to Urology is to rule out anything else and to bide time so as not to step out of line with the shin clinic, who made the first diagnosis and who have said they are going to ask for more bloods to be done. As you are aware GPs have to take into account other specialist Departments who are above them in their field of specialties or the GP could find themselves in trouble if they don't follow guild lines. You stated yourself that all the different Departments follow their own expertise and none tread on the toes of others.

My GP is aware of my concerns but has to also follow rules whether written or unspoken and has to be careful not only for themselves but to their patient. I'm lucky that I have a GP who at first sceptic, listened and then did some rapid research whilst I was there. This is as much new to her as me. Like I said at the moment I'm stuck between a rock and a hard place and I do understand the GPs need to check everything else out so we have a clearer view as to what we are dealing with. Lets face it if on top of this something else went un-noticed the GP would be for the high jump. So I can understand their need to rule anything else out so we have a clearer and stronger case.

I just hope the skin clinic get a move on and do as they say. I will give them almost the 2 months they say. Then I really will jump on them myself, condition allowing as and when at the time. I will not let this go on but at the moment mine and my GPS hands are some what tied.

I'm just glad at the moment I'm reasonable lucid and aware and not just accepting of anything. I'm also glad the abdomen has been behaving itself so I could feel the kidney was still playing up, with or without testing for blood in the urine. As you know most of the time no-one can tell if there is blood present unless it shows red or you get use to what you are seeing. Must admit though I was not sure if the sample would show blood which is why I'm getting my own testing kit.

xx