What other medical conditions, besides your ... - Vasculitis UK
What other medical conditions, besides your Vasculitis diagnosis do you have that may be directly /indirectly attributable to Vasculitis.
John_MillsVolunteer141 VotersPlease select all that apply:
Please leave comments as you see appropriate. Thank you
John Mills
To say I had eye problems, associated with vasculitis, is a bit of a stretch. The eye problems, cataracts, were a result of the medication, I had to take. These were successfully corrected some five years ago and now I have near perfect vision; although I do need glasses for reading.
I've ticked those appropriate to me but I would add that 'indirectly' due to medication I am now diabetic, have high blood pressure, high chlorestoral, problems walking ... the list goes on!!
Thank you Devonlottie...I know excactly what you mean..... The comments are as important as the poll.. We have to condense the responses into catorgories but any additional medical conditions not mentioned in the poll please leave a comment. We have tried to cover the most common in the poll.
We are only allowed 8 responses. 
All the best
John
I'm with DevonLottie except I'm not a diabetic 
me to but not diabetic
I have had atrial fibrillation, palpitations and shortness of breath also whenever I have a flare
I ticked all the responses appropriate to me. But I also suffered carcinomas of the bladder in 2008 and 2011 due to the long term use of Oral Cyclophosphamide ( over 5 years) the carcinomas were surgically removed successfully. John
I also have heart problems related to the Vasculitis. I suspect quite a few others will have as well.
We have the usual restriction of 8 fields Richard and splitting polls just causes confusion. But we find the comments just as useful as the poll itself. The evidence collected from the comments to previous polls has been excellent and helped with added information for research, surveys and information for the medical profession and for organisations acting on behalf of Rare Diseases. It will be interesting to see if there are other comments regarding Vasculitis causing heart problems and other symptoms we have been unable to fit into a category.
John
Could hypothyroidism be contributed to vasculitis, it was the start of me feeling unwell. Even when they felt they had got the thyroxine levels right I felt quite ill. I was already suffering with sinus , ear & eye problems.
Thyroid problems are often associated with Vasculitis Valwood, but sometimes it is difficult to say if the Thyroid disease is due to the Vasculitis or is an additional autoimmune disease.
John
I too have hypothyroidism and suspect the removal of my thyroid started this slippery slope of health issues.
I also suffer from anaemia, heart problems, hearing & sight problems,kidneys of an 80 year old (I'm 20 years to young).
Anaemia.
Anemia for me too! I don't know yet what kind as I'm awaiting my appointment with my hematologist. I know it's not iron-deficient anemia.
Just a thought, would get a better picture if you split it into two polls, One for the directly attributed to vasculitis and one for the medication related?
Yes you are quite right Lynne but sometimes it is very difficult to distinguish between the symptoms due to Vasculitis or the medication. Sometimes it is even more difficult for the doctors to distinguish between the two.
I completed it with symptoms before I started the medication, hope this will not mess up your poll
No the poll is a guide, the comments are as important as the poll if not more important sometimes Lynne.
John
Fibromyalgia used to be suggested as the culprit if my doctors didn't know what was wrong with me, or why. Now they have a new culprit - vasculitis.
This is all chicken and egg really. As a newly diagnosed person I'm not sure what illnesses I have that are vasculitis related and what are not. My MGUS wouldn't have been found if they weren't looking closely at my bloods for vasculitis related stuffs...
I also have anaemia, hypertension and high cholesterol and recurrent urine infections.
I have late onset asthma and is a precursor to Churg-Strouss syndrome. Interestingly, some time after being diagnosed with CSS, I volunteered for an asthma study run by Nottingham University. I can't recall who I spoke to on the phone though he was very knowledgeable. However, I advised that I take an inhaler and my asthma was not a problem now and said I had CSS. The first thing the person then asked was, "Did the CSS cause the asthma?", I had to say I didn't know if it did but, until I was diagnosed with CSS, I had frequent throat and chest problems, which are a thing of the past. I now only take my inhaler once daily and that's at night time. I have wondered about the cause of my late onset asthma ever since!
Also suffer with late onset epilepsy . Also fatigue . Not sure if this is relevant . Cath
I also have pred induced diabetes. Fatigue is a problem and incontinence. The latest problem has been gout!
My main secondary conditions I'd point to are bladder incontinence, diarrhoea (from the cytotoxics) and anaemia (from ditto). But I have a huge range of neurological symptoms, though they're not exactly conditions, more day to day problems with the disease. Technically so is the bladder incontinence, but that needs permanent incontinence pads (since my early 20s), medication, and has seen me seen by a urologist including urodynamics tests, so I think it counts as a condition now
EDIT: Forgot to mention I also have osteopenia (early onset osteoporosis) from the steroids.
I have high cholesterol and also have became "pre-diabetic" both thought to be caused by steroid use. I have very dry eyes and some double vision, also have had problems with severe vertigo & a couple of bouts of migraine (jagged lights) But mostly the vasculitis symptoms are focussed on the area around my right eye and sinus and the muscles in my legs.
I have also had high cholesterol but have managed to get it to a low enough level before being prescribed statins. worse problem at the moment is sinusitis.
I have CSS and as a result of it I also have:
Asthma
Left Ventricular Impairment (Heart Failure)
Cataracts (early, both eyes)
Bronchiectasis
Cervical Spine Spondylosis
Carpal Tunnel Syndrome
Bowel issues (medication?)
These are the main issues for me but I also have the "extras" such as joint pain, chest infections due to certain medications, occasionally depression etc etc.
Don't they say "what doesn't kill you makes you stronger"? 
I have high blood pressure and am border line diabetic due to steroids I believe. Also Reynauds.I suffer fatigue but have learned to pace myself quite well.
Late onset asthma, with no previous history of allergies - first sign of any health problems. Angina immediately prior to diagnosis, thought to be caused by untreated Churg Strauss Syndrome; possible pericardial effusion, or fat pad, discovered at recent MRI, echocardiogram awaited for clarification. Osteopenia from Steroid use. Most symptoms currently apparently under control thanks to Rituximab.
Diabetes type 2 - 3 years before vasculitis diagnosis
Pernicious anemia
severe obstructive sleep apnea
high blood pressure
Psoriatic Arthritis
osteo arthritis
forestieres disease
hearing loss
My DVT has now completely gone and no longer troubles me. I have developed high blood pressure which I suspect is as a result of how it affected my kidneys.
Not many of them I haven't got !
Normal cholesterol level until about eight years ago when it nearly doubled. This was eventually blamed on hypothyroidism. But then I developed fibromyalgia, followed by claudication in arms and jaw, raynauds plus visual problems plus reflux plus ?? cant remember it all as some things were so strange. Now officially Takayasu's .
Kidneys directly affected along with red eyes, nose bleeds, breathlessness, fatigue. I already had late onset asthma, osteoarthritis, spinal stenosis, sinusitis and high blood pressure. already had some aching joints and facial pain, different joints started aching when MPA active . Also had septicaemia in the gall bladder attributed to steroids whidh then had to be removed. Quite a collection.
I too have steroid induced type 2 diabetes and high cholesterol.
Fatigue is a major problem and also being mute due to blocked trachea. Thankfully I couldn't tick the box for kidney problems.
PAN also effects the testicles and the heart. I didn't see either of those on the list. Each as important as each other I believe
In addition to those I ticked, I've been diagnosed with Heart Failure...I have CSS.
I also have "issues" with bowels and had severe bowel inflamation 31 years ago when first diagnosed with PAN?!
Weak muscles and general body fatigue spasmodically.
I have arrhythmia and extreme fatigue which I find almost the hardest thing to manage on a daily basis. Osteopenia bordering on Osteoporosis due to steroids.
Forgot! Reynaud's usually only causes a problem in the colder months though.
I have Astma but have had this for a long time although doctors think it's part of my diagnosis. I have problems with my breathing. This could be due to mouth and nose but also as I have a leision in a lung which I see another consultant for. My arm and leg muscles are weak and I have patches of loss of sensation in my legs and feet.
In addition to the two boxes I checked (gastro intestinal and eyes/ears) both of which I believe have been caused by medication, I also recently have had a squamous cell carcinoma removed. This may have been caused by sun damage or a side affect of Azathioprine or a combination of both. My consultant has now taken me off Azathioprine as a precaution.
I kave type 1 diabetes ,addosons disease ,vitiligo.had accalasia last yr needed surgery ,linked to my polyglandular autoimmune failure.Now gca pmr ,and possible aps hughes ,Had amourosis fugax ,bad vertical dopilopia.Still on high doses of pred and hydrocortisone and fludro cortisone fro addisons.The vasculitis hitting my eye the worry,feeling tired very easily also.
I had late diagnosis of asthma, weakness in legs and arms also numbness in feet and legs, foot drop, numerous chest infections, very tired all the time painful feet, raynaulds
I have black spot around the eyes, always suffered from IBS/bowel prob, asthma, TB, skin probe, loss of memory increasing but that may be single mum syndrome, vertigo, fainting, UTI and on and on but hopefully now they can al be tied back to Tak vasculitus.
PS John also for women just to say once they reach 40 and have not been diagnosed with the vasculitus yet they are always fobbed off with the Menopause being the culprit. As women having had periods by that time we are very in tune with our bodies to know the difference between hormonal changes and anything else but convincing doctors is another issue !!!! It makes me so mad !
Hi Sadia,
Yes, "menopause" is a great getout clause for doctors.
Can you describe this "black spot around the eyes" more clearly. Have you had it for a long time.
John
