hello my wife started with a skin rash november time saw the skin dr who did tests and has said she has vasculitis had a load more blood tests and due to go see specalist in mid feb for results and to see what vasculitis she has but just lately she has become feeling hot and clamy day and night her concentration as gone west as they say she puts the cooker on and forgets things like that she as suffered from arthiritis for years and diabetes too now the gp wants her to go and see a bone marrow heamatologist urgently no idea y as the gp rang my wife and told her and she didnt ask any questions as she cant think quick enough
i am just wondering if all these symptoms could be related in some way or is she just unlucky and everything is going wrong at once
many thanks for taking the time to read this and for any answers
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jellly
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Hi, I would think there is a good chance they are all related and part of her vasculitis. I am glad they are being thorough as that way they will find out. If you look on the Vasculitis UK website for the Vasculitis Routemap then it will give you an idea of the different conditions. All the Trustees of VUK are very helpful indeed so you can always phone for a chat.
thanks zebra i may well phone for advice at the moment we are just trying to get our heads round everything since november we havent had a week without trips to the drs or hospital its just the waiting for results from here and there that gets annoying cheers for the info though
oh something i forgot to mention in my origional post was she was put on 100mg of dapsone a day but as had to stop this as she started to have breathing problems and the gp wasnt sure if it was the tabs or her chest in general but she has been off them for 3 weeks now and still no change
Has she had a chest x-ray at all? What speciality are leading her care? I don't know where you are in the country but there are some hopsitals with vasculitis clinics which can co-ordinate all the care.
I would think almost certainly all these symptoms are related to the vasculits.
What really surprises me is that, despite being told by the skin consultant that she has vasculitis, she was not given an 'emergency' appointment to see the 'specialist' (what type of consultant is this .. vasculitis specialist, or perhaps a rheumatologist?) since it is very well documented that any delay in starting treatment, normally Prednisolone steroid and an immuno-suppressant, a lot of damage can be caused to a whole range of organs. So waiting until mid Feb is a very long time if all these new symptoms are now starting to appear which indicates that the vasculitis is becoming 'active'.
If you read through the RouteMap document that you were referred to, it will help you to understand all aspects of this complex and variable disease ....vasculitis.org.uk/about/rou...
One of the variants of vasculitis is called "Rheumatoid Vasculitis" vasculitis.org.uk/about-vas... and this may possibly be the type that you wife has, since you say she has arthiritis? So perhaps she is already on steroid treatment for that condition?
Having made yourself more familiar with the information from the Vasculitis UK website links provided, I would strongly recommend that you and your wife get an appointment with your GP so you can question what is going on and the reasoning behind the decisions etc. Make sure you write down a list of questions that you want to raise and ensure everyone is addressed before the appt finishes. With these complex autoimmune diseases you really have to push to ensure both GP and consultants get the message.
Yesterday was my 9 month's anniversary of being diagnosed with Churg Strauss Syndrome, and I was lucky to have a 'mild' severity and diagnosed just 3 weeks after the vascilitis symptoms became very active .. click on my name to see MyProfile for full details. At present I'm hoping to get to remission in the next 2 to 3 months.
hi thanks everyone for your info and ideas for me to look into
i will try to answer the questions you have asked
we live in chester
the skin specalist is the only one dealing with it at the min
it all started in august with a skin rash waited to see if it went it didnt went to gp in september time
sent to see skin specalist in october had skin biopcies taken same day
in november we got a letter to go for a load of blood tests one of which had to be kept warm in the letter it said that she had vasculitis and that was the reason for all the blood tests it also gave her the appointment for mid feb not sure of date dont have letter to hand
xmas week another letter they lost all the blood and she had to go again so we did that the letter in november also told her to start on dapsone 100mg a day but this hasnt agreed with her or it is a complication
of the vasculitis our gp who is great doing all she can isnt sure herself so antibiotis and steroids till we go in feb also she has been coming out in bad lumps that puff up and burst loads of blood comes out
i think that is everything its not till i started to list it down here i realised just how much she is going through
i seem to remember my consultant saying there was a good man at preston.cant remember whether he was rheumatologist or nephrologist.you must not be frightened of making a fuss,time is of the essence in getting the right course of treatment.best wishes.
thats another thing we dont know what type of vasculitis she has yet the gp said the letter she has had from the specalist states she definately has vasculitis but not which type
it doesnt help that the skin specalist is an old woman who while i am sure highly qualified in her field her bedside manor as it was is none exsistent lol
- used mainly for skin conditions, and does also mention vasculitis (see below)
- "Dapsone is an antibacterial medicine belonging to the sulphonamide class of antibiotics. It is available only on prescription. It acts as an anti-inflammatory drug and has been used successfully as a treatment for several skin conditions such as dermatitis herpetiformis, pyoderma gangrenosum, Sweet’s syndrome and vasculitis for many years."
- so I assume she has stopped taking this because it hasn't agreed with her?
2) Is she on steroids for the arthritis, and if so what drug and what dose?
3) Re .."also she has been coming out in bad lumps that puff up and burst loads of blood comes out"
- where do these lump appear .. on hands?
- they sound similar to what I had when my vasaculitis 'erupted' .. they are called 'nodules' and are a typical symptom of some vasculitis types. In my case they erupted on both hands & fingers, but once steroid tabs were started (30 mg/day Prednilosone) they stopped erupting within a few days and dried up.
- so I think you should inform your GP. She needs to realise that although your wife is showing skin symptoms (rash & nodules) the root cause is NOT a skin problem .. it is more likely due to systemic vasculitis.
BTW: sorry to be picky ..... but please insert a few full stops and commas in your replies .. it is very hard to read them otherwise
So that all seems to make sense now ....and here are my comments ...
1) The 40 mg/day steroid is the correct treatment for most vasculitis types
2) the lumps have 'calmed down' is what I experienced once the steroids were started .. so that is good It shows that the vascultis 'symptoms' are being addressed .. that is good
3) but she should also be on an immuno-supressant drug as soon as possible to stop her immune system from continuing attacking her body .. that is the long term solution. The steroids are to prevent the inflammation, caused by the vasculitis, but the immuno-suppressant is a longer term solution, and will 'calm' down the immune system .. to prevent it continuing to attack her body.
- typical immuno-suppressant treatment is shown in the link on "Rheumatoid Vasculitis" vasculitis.org.uk/about... (see below)
"Treatment
Treatment depends on the severity of the vasculitis and the organs involved. Mild RV affecting only skin or peripheral nerves may be treated with steroids and immunosuppressants such as methotrexate or azathioprine. Severe RV may need treatment with high dose steroids and cyclophosphamide. Newer drugs such as anti-TNF antibodies and rituximab have also been successfully used in RV in combination with other drugs.
For RV involving the fingertips, skin around the fingernails or in the case of a rash the treatment is pain control, antibiotic cream and local protection. Stopping smoking is essential."
- I assume that your wife does not smoke?
I think you now have a strong case to present to your (elderly GP) to get answers to all your questions that have been suggested by this forum .. just go for it .. and get a quick solution to your wife's problems. She needs to be put on one of the immuno-suppressants mentioned above .. but this will have to be done by a consultant (specialist) .. not your GP.
Last point.. don't worry about the grammar and commas/full stops .. but it makes our 'conversation' so much easier if forum members can clearly see the points you are raising. I have a degree in science so I am well used to analysis and diagnosis of complex problems .. providing the symptoms are clearly presented. So far .. you are doing great
hi jjonty, please can I ask you a question regarding the nodules? I have nodules on my lungs, I don't really understand anything about them and my consultant says it could be part of my condition or from an infection/pneumonia. Do you know anything about these, the reason I ask is you mentioned in your reply jelly about them bursting. I am on 40mg pred and have re started methotrexate ( I have had 6 cyclos with no effect and 2 ritiximub). many thanks anita
My nodules were on the skin, so I suspect nothing like, in appearance, to those occurring in your lungs, but both are symptoms of vasculitis. I suspect that your consultant is correct in saying ..."my consultant says it could be part of my condition or from an infection/pneumonia".
If yours are symptoms of your condition (WG), then I would have thought they should eventually clear up as the steroid and immuno-suppressant treatments continue.
hi jonty. thank you for replying. I was January 2013 when they finally told me I had wg. I started with nose bleeds, then earache/nose (which my gp said was sinusitis) this went on for a couple of months as they kept giving me different antibiotics, creams/sprays - as this was continuing I also got a lot of muscle ache, was sick, started to have a fever, burning up, lost weight, got a purple rash on my leg which felt someone was burning it on me, then I got electric shots in both feet - lots of swelling, and my joints in both sides of my body were extremely painful, I could hardly walk or breathe as I had chest pains. my gp's just thought I was making it all up! even though they could see my joints were swollen, eventually they referred me to see an ent doctor as my nose was still blocked. it was the ent doctor who actually took an interest in why I could hardly walk and I am so glad he did, I got uveitis twice in my eyes. I was told in February last year I had one nodule but my consultant was not bothered, then in august it had turned into several, when I asked her what they were or if they caused damage she said she doesn't know and as long as I don't get any more or that they don't get bigger, then it is ok. I got pneumonia so they thought the nodules were from that, but I pointed out that I originally had one in February. all I know is that they are not cancerous. but I am still out of breath, cannot walk very far without chest pains, to me, I think it is something to do with these nodules, but she says no.
I really don't know much about nodules on the lungs, other than as previously mentioned to you in an earlier posting, they are a well known symtoms of WG.
Re your comment ... "I got pneumonia so they thought the nodules were from that, but I pointed out that I originally had one in February. all I know is that they are not cancerous. but I am still out of breath, cannot walk very far without chest pains, to me, I think it is something to do with these nodules, but she says no."
- pneumonia is most likely because your immune system is suppressed due to taking steroids and any immuno-suppressant you also take
- I have had 3 occurrences of chest infection/pneumonia in the last 31/2 months
- being out of breath etc are all 'symptoms' of WG and so not 'caused' by the nodules. I believe, but I may be wrong, that the nodules are just another 'symptom' of WG .. and not the 'cause'
You need to get your consultant to read up on vasculitis and particularly "WG" ...
thank you jonty I did read the medical site but it was too complicated for me, so I will ask her at my next appointment to have a look at both of the links.
I hope you are on the mend and the best that you can be.
Thank you for your best wishes. I am doing OK and hope that I am heading for remission within the next 1 to 2 months. Luckily I have a 'mild' severity of Churg Strauss Syndrome and so have no damage to any organs, and so far my active symptoms are not very active. I am a trained scientist (physics) and so take great interest in analysis of the data of vasculitis .....
I don't know if this is relevant, but 15 years ago I developed very large bruises on my shins known as Erythum Nodosum (quite rare). Over ten years later I was diagnosed with Cerebral and CNS Vasculitis (extremely rare). Our son was treated successfully for Kawasaki Disease as a baby (fairly rare). I am convinced that these rare illnesses are, somehow, all related to each other but cant find any evidence about the links. I would love to know if anyone else has any thoughts on this. Thanks. Stephen.
I have EMS myself, which is a poisoning from a food supplement. It used to be believed that EMS could be caused only by L-tryptophan, now there are other substances that are also suspect.
Hi Jelly, so sorry to hear about all this. It certainly could be all related and could be part of the vasculitis.
If your wife gets confused why don't you speak to the GP yourself and get some idea of what he/she thinks might be wrong. If it is vasculitis, a haematologist is probably not the best person for her to see - more likely a rheumatologist will know more about it. But then maybe the GP knows something more from blood tests. Has she had tests for her kidneys? If she has kidney problems this can cause confusion & loss of concentration. Very best wishes to both of you. John
Thank you everyone for your suggestions and advice given me a lot more insight on what to ask our gp and what I want to ask the specialist when we go.
I will of course be back to keep you all updated although won't be back till next week now as going away for a couple of days (travelling for a family funeral ) just wish it was a nice trip.
Everyone take care stay happy and catch u all soon
Sound s like she is in an inflammation stage of some kind and it is probably all related she knows her body best. Other symptoms start to show for me if the inflammation is not controlled and the GP is trying to cover all bases. She needs to see a specialist to assess what her vasculitus is, i also was seeing 5 specialist consultants for various ailments and symptoms and am finally at Prof Masons clinic for tests regarding Takayasu Vasculitus. Best of luck
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It shows that the vascultis 'symptoms' are being addressed .. that is good
New to all this
Hi everyone 
Could this be vasculitis
New to all this...
