I have been diagnosed with WG for 2 years an... - Vasculitis UK
I have been diagnosed with WG for 2 years and I am now on 11 different types of medication totalling 20 pills a day is this the norm ?
I guess it depends on what you are taking the pills for. We often have to take a loadof secondarystuff to stop the main drugs causing different problems or to cure the problems.
I take 7 different types 3 of which I take twice a day. In addition I take risedronate once a week. The two main tabs are azathioprine and prednisolone. The rest are to stop the main tablets upsetting my tummy, to stop me getting osteoporosis and now I also have BP tabs and cholesterol tabs.
I've been diagnosed for two years also but now i'm only on Prednisolone 6mg, Adcal, Omeprazol and every other week amoxicillin for the continuing infections i take x
John is taking Cellcept 2gm for the WG, Ramipril for high blood pressure which seems to be caused by the WG, warfarin for a DVT also caused by the WG.
He used to take prednisolone up to Spring of this year, and took Adcal and risedronate to help prevent osteoporosis caused by the prednisolone.
At the moment he is also taking antibiotics and antiflammatories for a urine infection and very high temp.
John has had WG for nearly 11 years.
I'd agree with Patricia. The pills can be prescribed for various reasons. I now have 14 different items on my repeat prescription, and take over 30 pills every day. Some pills are to control the vasculitis, so cytotoxic immunosuppressants (I am on rather a lot simultaneously) as well as steroids. Others deal with side-effects of the drugs, so anti-nausea pills twice a day, anti-diarrhoea pills, calcium supplements etc. And still other ones, in my case, try to help with the symptoms of the disease (cerebral vasculitis in my case). So I have an anti-incontinence pill that I take daily to help with my severe bladder incontinence from the brain damage, an anti-anxiety pill, and some pills (taken twice daily) that help improve the blood flow, and seem to make my brain more "normal". I have been ill since 1994 and was diagnosed in 1997.
Hi please may I ask what meds you are on for blood flow to brain. I suffer with really bad headaches, memory issues etc. I have tried lots of different meds but none help so am keen to speak to others.
Thank you
It's contentious, because my vascular consultant doesn't think they do any good. But a GP at my practice before I was diagnosed in 1997 wanted to try them. And they help me a lot. When I stopped taking them I was much more doolally.
The drugs I'm on for this, and have been ever since then, are Paroven = Oxerutins. My current GP says he doesn't know if they should do any good either, but as long as they seem to be helping he's happy to have them on my repeat prescription.
I am getting worse dementia-wise over the years though. My cerebral vasculitis is progressive, and dementia is one of my problems, since my early 20s.
By the way really bad headaches are a standard symptom of cerebral vasculitis, although I didn't get them for nearly a decade - had dozens of other neurological symptoms though. What type of vasculitis do you have? Have the doctors looked into the brain side of things in case there are problems there?
Hi thank you for your reply. I have been told that I have vasculitis but the neuro I see says I don't. In 2008 I had severe pain across my shoulder and down my right arm, this lasted about 3 weeks and I couldn't sleep properly or lay down. The pain stopped but my shoulder blade suddenly stuck out (winged scapula) then 2 days later I had a TIA according to A and E, (neuro now says it wasn't or the others that A and E have down as TIAs, the rheumy has then as TIAs - only started seeing the neuro this year but I did see one privately back in 2008 and he discharged me to a rheumy as it was found that I have SLE).
I also have anti phospholipid. I had MRI which was fine, CT which was fine, a SPECT scan which showed lots of abnormalities in the blood flow. After starting on meds and also a round of cyclo and rituximab I had another SPECT which was greatly improved from the first one.
Unfortunately as I had had lots of meds including starting to inject heparin for the APS they couldn't be sure which med had helped!
I had another round of Rituximab in October and one of the nurses on the ward asked how long I had had cerebral vasculitis.
For me I don't think they really know what is causing my problems but I have tested positive for SLE (lupus), vasculitis (PR3 I think and ANCA), APS, I also ave diabetes and they found a small PFO when they ran lots of tests in 2009 after a second TIA.
Sorry for waffling on but I think that for many of us in here it's been a long and difficult journey and we still don't have all the answers. I guess that this area of medicine is still new really so they are still finding things out.
Hope you are feeling ok today.
Louise
Thanks for your replies , I take prednisolone and azathioprine ,3 for high BP,1 for high cholesterol , stomach protector,antibiotic , protection against osteoporosis ,phosphate defiency and vitiamin D defiency and I wondered if it will ever end , or will I get an invite to the Pharmacists Xmas party
Hi, can i ask what the anti-incontinence tablets are called please. I have this problem aswell, i didnt know u could get tablets for it. However, i dont have it all the time its just sometimes its worse than others. X
I take Detrusitol / Tolterodine. Oxybutinin is another drug used. GPs should be familiar with them. All cause dry mouths so have implications for dental health. I'm now on special toothpaste (on repeat prescription) cos of that! But I couldn't manage without the anti incontinence drugs. Without them I'd be dashing to the bathroom every 15 minutes, all day all night, every single day. I was checked by a urologist to make sure there was nothing else going wrong, like a bladder infection. I have to wear incontinence pads, permanently, since my early 20s.
I take 5mg prednisolone, lansoprazole, folic acid & 10mg ramipril daily.
And i take a fosamax once a week.
And i am to have rituximab on the 22nd (6 months after first lot)
I too take 11 different drugs some twice/day (including Cell-Cept & pred 5mgs for WG) so I am rattling along with the rest of you but they are keeping me on an 'even keel' so to speak!
I answered another question on this site about immunosupressants and I think my answer for this may be similar> Ihave had CSS for 16yrs and have had a concoction of meds, when I was feeling low and a fraud just before christmas I stopped all meds. Lansoprazole and Domperidone for my stomach protection and anti emetic, I used to take non steroidal anti inflammatories and within weeks had a GI bleed so I avoid these at all costs. Amilodopine and Ramipril for high Bp, Prednisolone,Methotrexate, Folic acid, Calcious, Strontium to reduce the effects of the Prednisolone, Fortisip - food supplement, I have never been more under weight since taking sterroids 16yrs ago. Then there's the pain relief, CoDydramol and Oramorph, and the ubiquitous Movicol otherwise I become ill stop eating because I have no room left in my digestive tract.
The list of pills seems like it's endless but as others have said some are for thevasculitis and others are to counteract the effect of these meds.
This site has been a God send because selfish as it sounds I'm reasurred to see that there are so many of us around that have one of these rare 'silent' diseases that no one seems to have heard of
