My daughter has systemic vasculitis mainly i... - Vasculitis UK
My daughter has systemic vasculitis mainly in her legs. One of her toes is going black and she is getting pressure sores on her heels. HELP
This is not something which should be left, especially the toes. I would advise putting in a call to the consultant - today if possible before they disappear for the weekend. Failing that the GP.
PatriciaAnn
Thank you Patricia. My Daughter also has Fragile X and talking her into anything can be a real problem even though she is 34 years of age. We are now into Friday night and I won't see her until Sunday. She may tell me it is a bruise. I am scared for her.
HI this is Nicole please read my reply below
I believe systemic is a general term to describe an as yet not fully diagnosed vasculitis. Can you give us more details of how long your daughter has been ill, who she is seeing in terms of a consultant and what drugs she has been prescribed?
This must be so worrying for you and I would advise you seek informed medical opinion as soon as possible. Can you ring her consultant today and get his advice? If you are unable to contact him, it is Friday after all, then you may feel like taking your daughter to A and E and giving them her medical details and disease diagnosis. I am presuming that your GP does not know a lot about vasculitis but, if he or she does, then it would be worth contacting them as a second option but try the consultant first.
Ayla
I support the above suggestion. Ring her consultant today.
She is 34 years of age and is living on her own. She decided 3 years ago not to see a consultant. She will see a GP but I don't think that he knows much about vasculitis. She is taking Gabapentin and a few other drugs, but her legs are awful and her feet are swollen. The pressure sores on her heels are being treated, but I am doubtful about that treatment. I think I should go to bed, rest, and tackle this again tomorrow. Thank you all for being there for me. I just get frantic and at almost 64 I feel useless. I will log on again tomorrow.
You are not useless, you seem to me to be her possible salvation. Difficult one, if she is refusing appropriate help but would she respond to some decisive action from you, perhaps from you and one other sympathetic and determined close friend or family member? I am not you, and your daughter is an unknown quantity to me, but I have a beloved daughter of similar age and, if this was what was happening to her, I would order her about and physically take her to A and E, whatever protestations she made. I'd tell her she could argue about it afterwards! Check first, though, that what she is telling you is indeed what her body is showing.
She does need a consultant with knowledge of vasculits, though, and urgently, I would say.
Ayla
Thank you Ayla, We had my daughter living with us for a year when she just couldn't manage in her unit anymore. In that time she had over 200 appointments trying to work out what was wrong with her. She had blood tests, a section of nerve taken out of her calf for biopsy, lung fluid drained twice, and a progesterone stick inserted in her womb to stop the bleeding. It was draining for her and us. I can understand why she feels the way she does, and to be honest, we don't know who to go to anyway. There is no Vasculitis Foundation in Australia for us to contact, hence my search in the UK via the internet.
Nicole has had two courses of infusions and she was so sick that that also is not on her favourite agenda.
I am 64 and I have 7 different chronic conditions. My husband is 63 and had a triple bipass surgery 5 months ago, then a stent put in 6 weeks ago as well. There is only so much we can do and I guess that is what leads to my feelings of frustration. It is so good to have people to talk to who are aware of the problems we have. Please don't forget us.
we wont just keep in touch
Reading what you have written here, I am so sad for you and your family. There is just too much hitting you right now. I just wish we could do more to help. What strikes me is that the way forward may involve an outside agency, someone who could be an advocate for Nicole without involving you. Has she got a medical social worker support or some such? Is there such a person at the hospital she has attended in the past? You could, perhaps enlist the support of an able younger relative to do some phoning round to find someone to help. Forgive me if this does not seem helpful or relevant.
Moving on to her medical condition, how is her GP doing at dealing with this? Is he or she content to allow her condition to deteriorate without recommending a specialist? I realise that the hold up is probably your daughter's understandable fear of more tests, etc. Could you visit her GP without her and get a full picture from him or her as to what they think about Nicole's present condition and how they see the way forward? Once you know what should be happening, you could ask her GP to send her to the right person who would be able keep the tests, etc. to a minimum.
Perhaps, once you have an appointment with the specialist, you could ring the hospital and ask for a telephone chat with him to explain Nicole's medical history before she sees him? This way, her emotional and mental well being will be, or should be, protected.
In the UK the first line of referral is usually a rheumatologist who will be able to determine just which type of vasculitis Nicole has. I fully understand her reluctance to start down the road of tests again but, as she has the general diagnosis of systemic vasculitis, then it should be a straightforward blood test, along with a clinical examination that would say which type she has. Only then can the relevant and, hopefully, effective medical therapy be given.
What infusions has she had? Can you remember the name of the drug given this way? It obviously had no lasting effect but it is likely she just didn't have enough. Depending on what it was, it may be available as an oral medicine which could suit her better.
If possible, write a list of ALL her symptoms, including the minor ones. It is all relevant and the list will be useful when she does see a specialist.
Have you looked on the Vasculitis UK website? There you will find all sorts of information which should help you. Most vasculitis patients learn to be their own advocate by reading all they can about it as knowledge of the disease among non specialist medical professionals is so limited.
We are here to help. Don't hesitate to write more, we are all thnking of you and want to know that things are working out for you and Nicole. Bless you!
Ayla
Despite the distance between UK and Australia I'm absolutely sure that you will get all the help Vasculitis UK can give. Although there are 15 or more specified vasculitis diseases they can still behave differently for each person. The one aspect of Nicole's I am familiar with is pressure sores on her heals. I had it on my right heal which was painful and very uncomfortable. To eliminate any adverse skin condition I had a small biopsy sample taken which did not present with anything. Having suffered for several months I suddenly realised that, while sleeping, I could be rubbing my heals on the bed.
I don't recall any mention of it before but due to general discomfort of my vasculitis I can only comfortably sleep on my back, which keeps my heals in contact with the bed. Just pushing with my heals to sit up in bed aggravated the condition. Finally, I just added a pillow so my heals were clear or lightly touching the bed and the soreness reduced almost overnight. I just feel a little discomfort now. Medicines used for vasculitis treatment also thins the skin, which doesn't help.
To help us and our GPs understand more about vasculitis here, Vasculitis UK in collaboration with our medical experts, produced a 'Vasculitis Route Map', which, if nothing else, may answer some questions you have and prepare some to ask your GP or Nicole's consultant. I'm not sure if it is available as an internet document?
I hope this is of some small benefit to Nicole, yourself and your husband.
Derek
HI this is Nicole ..
To clarify a few things .. I have had 5 infusions of intragam and saw/felt NO improvement not to mention the side-effects as well sucked (nausea,vomiting,headache - boardering on migraines) and due to me getting travel sickness i couldn't eat before I left home or after the infusions so it meant i didn't eat for 1/2... so i cancelled the last one ...
I can't cope with the mental and physical pressure with seeing 6 different doctors at once again (neurologist,immunologist, dermatologist, lung specialist, Gynecologist plus my GP) ,..
I have ordered "Vasculitis Route Map" (yes mum u can read it). My GP is nice and I like him.
No offence intended for any medical professionals who may be reading this"
My main issue is what do they do ? seriously I spend longer in their waiting rooms while than I do in the actual (no more than 10 mins) appointment which is generally ended with a blood test and go back in X weeks or so and find out there is nothing new so (oh yeah then its more money and time) i spend 1/2 day for what ? nothing ? nothing changes nothing is new so what is the point ?
IF they did something then it MIGHT be a different story but not getting anywhere really plainly (sorry again SUCKS) they are supposed to work for me not themselves
I've had skin,tissue,nerve biopsies also countless blood tests, scans,x-rays as well (oh I also have plueral effusion which is fluid build up in my right lung lining) all of which has helped then in well.. no way at all
Feeling like I have to justify myself to all the medical community as to why i use a wheelchair when i leave my house EVERY appointment was getting old and frustrating.
I don't wanna be sick forever but i know i will be and maybe one day this illness will take my life (sorry mum but I am being honest) and maybe it wont who knows
I can't control most of what happens in my life BUT this is something i CAN control
Yes i know i am going to cop heaps for this post but i felt i needed to say something in my own "defense" as it were
I am glad you wrote, Nicole. It seems so hard, what you have been through, and the hardest thing of all is that you don't seem to have had any benefit from all the tests and treatments.
Bear with me but I think we need to be really clear on the basic facts. Can you tell us: what is your diagnosis? When were you diagnosed and by whom? No names here, just his job title! What are your present symptoms and have they changed from the first ones you noticed? Are any major organs affected? Why do you use a wheelchair? What, if any, medication for your vasculitis are you on now? Have you ever seen a rheumatologist? The hospital where you saw all the specialists, are they experienced in dealing with vasculitis patients? ( I am afraid it doesn't sound like it!). Do you have confidence in your GP and does he know anything about vasculitis?
And, most important of all perhaps, how do you feel? Ill or well?
Please try to answer all the questions and then we should be able to give more personally relevant advice.
Look after yourself, Nicole!
Ayla
ok i was diagnosed by a my GP i think (it was 4 years ago) who referred me to everyone its hard to remember because they all "worked together" i know the neurologist wanted the biopsy done (sureal nerve - sorry can't spell) that was a few years ago - problem is that i was seeing everyone at once (if that makes sense) so they were talking to each other making sure they were all 'on the same page" problem is i wasn't getting anywhere it was just "monitoring monitoring" which sucked because i want to get rid of this vasculitis and put it in the medical HISTORY column
they KNOW its vasculitis BUT they can't work out which specific type it is - yeah i know it makes it harder.. one doc said (don't ask which one coz I have no idea) that I may never find out which type I have.
It started waaaay back in 2009 (so bear with me please) i had a rash on my legs which turned out to be foliculitis (again can't spell) then when that didn't heal vasculitis was mentioned I have week knees I also have plueral effusion in my right lung which i had before the vasc diagnosis BUT if its related or not is anyones guess (seriously no one knows) which is one of the reasons i use a wheelchair when i leave the house i also can't wear shoes because it annoys my feet too much so haven't worn shoes for 3 1/2 years
The medications I am on are: Gabapentin, Plaquenil, Prednisone (everyones fav), lexapro (low dose anti depressent), losec, vitamin D tablets (can't go out in the sun my GP told me) , Codine Phosphate (over the counter stuff) Iron tablets - as I am also anemic.
how do i feel ? i feel like crap (sorry) i feel frustrated and angry and a few other things anyway to answer your question: my legs are the main issue it prevents me from doing a lot as does my lung condition - like exercise for example
I also have an infected toe and an ulcer on my heel which i have completed 2 diff types of antibiotics
I like my GP and I can cope with him haven't asked if he knows about vasc or not
I havent seen a rhemutologist (sorry spelling agian) because no one has suggested/referred me to one they havent even been mentioned
is there anyway to attach files to this site ? if so i can try and dig out a spreadsheet that my dad kept for me which shows ALL my appointments and what was discussed.
Thanks for this really helpful history, Nicole. It does confirm what your mother told us. I don't think we need to see the detailed history.
From what you say, and I am not a medical expert, your diagnosis of vasculitis has not been followed with appropriate treatement. None of the drugs you mention will improve your condition, apart from the pred which may help control the inflammation but it is not enough, on its own, to bring about remission. As I told your mum, you should have had/be having, a medical sledgehammer initial treatment of high dose steroids (prednisolone or prednisone) along with cyclophosphamide (an immune suppressant drug) to drive your vasculitis into remission. This is the same, whichever form of vasculitis you have, if it is affecting you badly, which this sounds to be. The fact that you have not had this treatment could be down to one of two things: that the doctors you have seen do not think you have the disease (from what you say, not a likely option) or that none of them know enough about vasculitis to treat you appropriately.
If I were you, I would do two things. Get your GP involved. Download a copy of the Vasculitis Route Map and take it to him. Tell him that you need to see a vasculitis specialist (they may be rare) or a rheumatologist (these are the more general specialists with most knowledge of vasculitis in the UK so I reckon it will be the same in Aus.). Get him to suggest a way forward which is not to send you back to the ones you have seen already.
We have a team of vasculitis specialists at Addenbrookes Hospital, Cambridge, here in the UK. They have an excellent reputation. One of them is Australian and has recently joined the team. His name is Dr. Darren Roberts. It may be worth your while to email the clinic (the head of clinic's secretary's email address is sue.reid@addenbrookes.nhs.uk), give the town where you live and ask if Dr Roberts can recommend a specialist near to you). A long shot, maybe, but perhaps a last resort if your GP is out of his depth?
I am afraid this isn't easy for you, Nicole. You will need, as we all did, to become your own expert and learn all you can about your disease so that you can ask the right questions, agree to the right tests and the right treatment. I would recommend that you read the Route Map carefully, it is a mine of information. I do wish you all the luck in the world.
Another thought - why not ask a question here on this site to ask if anyone in Australia has vasculitis? Then you could compare notes and get some local support? I know there is one other lady contacting us from your part of the world, and there will probably be others.
Let us know how things go,
Ayla
Where is it you live, Nicole? I see you are listed as living in Norway on your details, yet I was thinking you were living in Australia!
Ayla
my feet turn black when it first happened I went to my gp he told me to keep an eye on my feet and told me if it happens again to wrap them in a blanket but if it carried on he was going to have me admitted to hospital so far it as worked for me I advised your daughter to go to her gp as soon as
