B12/folate deficiency.

[Boudica1]

Has more bloods taken yesterday, this after-noon GP phones and informs me my b12/folate levels are low, so I have to pick up prescription's from chemist. Is this a normal problem with vasculitis?

[Katie18]

Hi Boudicca my GP has picked up on low vitamin B in the past but when I spoke to my rheumatologist about it the aziathioprine I take apparently alters the composition of the blood so they didn’t do anything about it. I think my levels fluctuate a bit too. May be worth talking to your rheumatologist about it?

[Boudica1 in reply to Katie18]

Hi Katie18. At the moment I'm not taking anything for the vasculitis. The dermatologist wanted me to take Dapsone but would not listen to my concern's about it and I don't have a bacterial infection either, so I'm drug free except for the meds I have to take for my asthma and COPD. I've been refered to a rheumatologist by my GP because of problems with the kidneys. I saw him last month and have an appointment with him again in about 8weeks. I only went to the GP as the pain's with spasm's and numbness with spasm's are driving me nut's, hence this last batch of blood test's and results.

[Katie18 in reply to Boudica1]

Hi - I think you should push to see a rheumatologist as soon as you can. They usually know the most about Vasculitis and most people who have it are on some kind of immune suppressant drug for a long time. If your GP has referred you, you could ring the hospital and speak to the appointments team or the rheumatologist’s secretary to find out how long you will have to wait.

[Boudica1 in reply to Katie18]

Hi, I see the rheumatologist a few weeks ago and have another appointment in the first week of August. He has also mentioned about referring me to a vasculitis clinic but has told me that may take some time as it's only a small clinic that meets once a month. So at the moment I having to be patient unless thing's go very wrong as I know there are people worse off than me.

[Katie18 in reply to Boudica1]

Hi Boudica I’m not a doctor but I do know problems caused by Vasculitis can escalate very quickly and so if your spasms get worse or don’t go away I would at least go back to your GP to check things out. It seems strange to me that you are not on any medication to control the Vasculitis. You could always ring the Vasculitis helpline for advice. I don’t want to worry you but even though there will be people worse off than both you and I, it is a rare & serious disease so we do need to take extra care. Good luck & take care

[Boudica1 in reply to Katie18]

Hi, like I said before the skin-clinic wanted me to take Dapsone which I have refused as they wouldn't take my concerns seriously, in fact so far the skin clinic have ignored all my questions and seem hell bent on doing what they want no matter what. They even brushed aside by blood result's and told me everything was normal. It was only by chance that I noticed on the screen in big bold letter's that I was C-ANCA POSITIVE.

I've been refered to rheumatology who have actually examined me, something the skin clinic didn't do. They have had to do more bloods and test's as there seems to be a problem regarding the kidneys but other test's have shown no kidney stones. They did tell me I may need a kidney biopsy to see if the vasculitis has had a go at it, plus they have said about getting me into the vasculitis clinic.

All this takes time, so unless something really bad happens I have to give them time to do their job.

[Christophene47 in reply to Boudica1]

Or if a crisis happens before, do go to emergency at your nearest hospital.