Well the hardest few days waiting for tests. Nearly went mad. Well outcome is primary ovarian cancer at least stage 3, secondaries in liver and peritoneal cavity. I'm seeing a specialist for biopsies...
Well hope it works for you. I did injections for over a year and a half everyday and never had an impact on my disease....
Yes I have my partner who is fab... My other children and family are overseas. So far I've only mentioned to my brother over email (as he's been through big medical battles in the past). Just getting...
Thank you so much. This is all incredibly hard.... Physically and mentally. It's like I've stepped through a door where life will never be the same and I can never go back. Only a week ago I was...
Thanks both. Had first stomach drain today. Quite painful. Ok I cried and I never cry with medical rubbish. Took some of the dark coloured liquid ... String urine coloured. Took samples off to test....
Thanks - its not blood (they said) it's specifically ascites causing the bloating. Raised heart beat slightly raised bp. Everything looked fine but they could not see the ovaries so I need to go...
Posting on Crohns and UC threads I've tried so bloody hard over the years to write off the downs (of which there have been many) and big up the few highs. But the negatives keep coming. Two weeks ago...
My father died 13yrs ago and in the final weeks caught MRSA. I was on azathioprine at the time and did discuss with docs and nurses on the ward... Who agreed as long as I stayed away from any bodily...
Sorry you have this at all. From my experience there is no definitive test for costochondritis ... Rather it's an assumption made from symptomatic pain with a lack of clear injury. I've had three...
Was on 150mg aza throughout my third pregnancy - fit and healthy 12 yr old now!...
Be interested to see responses to this. Personally I believe the disease does progress ... At different rates obvs ... But it wears heavy on the body. Add to that the wear and tear of old age plus...
Although 12 years ago ... I took azathioprine during and after my last pregnancy.. Nursing too. It lowers immunity but only very marginally, nothing on the scale of chemo patients. Any doubts obvs...
Just for info, my last hospital in the UK was RLI (used to live in Lake District). There are certainly good individuals there but as a whole I would not recommend that hospital... CQC was far from...
Had salmonella in Dec. At first I thought it was a flare ... But soon realised it was soooo much worse. BP 60/40, CRP 199, just water diarrhoea, heart rate 100+ (I'm normally around 45-55),...
Hi RM - if 2.3 mg/dL then equivalent to 23 mg/L. But useful to know what measurement is in for your own info. Anything above 10 mg/L is deemed high. Some people's CRP never rises ... I lived many...
From personal experience ... Both in UK and France CRP is measured in mg/L My highest was 199 - felt like death ... But more of an issue was BP of 60/40....
Hairloss for some (like me) is a cycle the cause of which is hard to pinpoint. I've never associated it with azathioprine on the basis the first 13 or so years on the drug nothing major happened....
Hi. I've never had shingles but chicken pox twice whilst on meds - first when on azathioprine alone and second when in azathioprine and humira (last year). Neither time did I stop azathioprine. The...
Scifigal... Just wanted to say ... I don't have a clotting disorder either, just an increased risk due to this blasted disease. I was initially told I needed thinners for 6 months ... Within a month...
I've had Two DVTs and two bi lateral pulmonary emboli. I was initial put on Rivaroxaban - a non reversible thinner - had two major bleeds. Needed two emergency blood transfusions. The issue is...
Yep ... 150mg ... Always had same dose. Weight fluctuates but always between 2.7/3 ratio to weight (so slightly above recommended ratios for IBD). Hope all goes well for you....
My third child (who is now 12) was an Imuran baby so to speak. No negative impact ... Bright, healthy and stroppy as any her age! Not sure is relevant as didn't do both drugs ......
If it persists I'd get yourself checked out. Could be a whole host of harmless things ... But could also be more serious. Anaemia is that old friend that seems to cause this as well as other things...
Hi - transferred from London up to the North West. From the North West to south of France. Quite straightforward each time. In UK you can ask your current consultant for a recommendation or just get...
Aimz - despite being an 'in' supporter I agree it was your right... Similarly I do not support a re run of the referendum. No quorate level was set at the outset so goal posts shouldn't be moved now....
Sad day for the UK. Sad day for EU workers/students in Uk. Sad day for expats (like me) In the EU. Sad day for the EU. Sad day for my children, family and friends. Hope the far right in France don't...
After numerous attempts - always went to pot when I hit 10mg - it was suggested by my doc to do 1mg per month. It was a little up and down but it worked. Everything had always settled back before the...
Long time user of aza (15yrs and counting!) - no tiredness. No side effects as such (lower immunity of course). As mentioned above ... Anaemia which often goes hand in hand with IBD can cause a whole...
Positive ... Infliximab/remicade didn't work for me but Humira has had a better result. No worrying side effects. Took a while to feel the benefit but got there. Small issue with repeated chicken pox...
Hi I've had numerous DVTs and bilateral PEs twice. No the drugs are not the cause of increased risk ... It is the disease. Once you've had one clot, you are clearly at higher risk of getting more....
My understanding is that osteopenia etc can be addressed in part if you opt to take the necessary drugs and/or diet modifications and exercise....this maybe through slowing as suggested above (so...
I've had a few bouts of significant hair loss. I blamed one drug after the other and also got quite distressed about it. It's bizarre how with serious ill health, hairloss (which is medically so...
Uk protocol is infliximab (remicade) first and only if this fails are you offered Humira. I've had both ... First did nothing And second worked. Not sure why trying different ones equates to false...
I tried with all my might to believe infliximab (remicade) was working ... But after three months I had a major flare and an emergency admission. Emergency sigmoidoscopy showed no improvement and so...
I've been on it 15 years. It's not a major immunosuppressant (less than biologics) ... In all those times the only immune problem I've had is two bouts of adult chicken pox (and I had them as a child...
Rights or wrongs of the system - contrary to the comment above ... you can pick and chose your consultant in the UK. It's a case of knowing the system. There are a number of approaches ... Most...
I've been on pred many times but only once did I notice a weight gain (about 9lbs). No other weight change due to drugs for me ... Only excessive weight loss due to flaring....
Nope. However bad I've been ... I've always planned. I accept I might not get there (even missed my last long haul holiday as I ended up admitted to hospital) but that won't stop me planning. I'm not...
Nod2 was one of first genes linked to Crohns (not sure about UC)... There is plenty on the web to explain. Never heard before that it is through the maternal line ...only that the presence in EITHER...
Pred pills come in 1mg and 2mg as well as 5mg. Recommend getting lower dose pills rather than cutting in half. Then you can probably manage a slow decent....
Yes I switched from infliximab (remicade) to Humira (which I appreciate is not an infusion, rather self giving via syringe). I had no break between (had Humira loading doses shortly after an...
I can't agree with Rivaroxaban and IBD sitting comfortably together. Subsequent to my posts above I was put back on it ... Only to then have another major bleed and need transfusions. Ironically this...
I don't claim to understand the intricacies of biopsies ... But when my diagnosis was changed from UC to Crohns there was no suggestion one disease (UC) had progressed to Crohns, rather that the...
Yep. Tbh I'm not sure why my diagnosis changed - can't recall the detail. I was so ill in hospital at the time I didn't care what they called it. I believe (though could be so mistaken) the original...
Crohny-I... Osteopenia and osteoporosis are a direct and serious side effect of pred ... And bone health isn't helped by poor absorption and being underweight. Diagnosed through a dexus scan...
As said, check norms for your country. They are not all the same as the UK <10mg/l. The inconsistency across health care systems is an interesting one ... Albeit the difference in this case is likely...
When measured in mg/l normal range is below 5. The ranges do vary according to where you live, last country I was lived in, if I recall correctly, normal range was less than 10. When mine hit 190...
Sed rate usually relates to your ESR. ESR is a slower inflammation marker than CRP... So lags behind CRP. Hence CRP is more useful as it relates to how you are at the time (albeit accept that some...