Losing hope

[juliebover]

I saw my Specialist today at Guy's...he told me I might not get better cos I haven't responded to immunosuppression and Infliximab. Being referred to Behcet's centre at Royal London Hospital but don't know how long I'll need to wait. I can't carry on feeling so ill.

[Jaxxi]

That's a blow, juliebover. How is the BD currently affecting you, how long have you had it and what have you tried so far?

You could try giving the CoE a ring to ask how long their waiting list is.

[NerdyChristina]

Don't give up. I stopped responding to biologic medications (Humira, Rituxan, etc.) and they think I may have developed antibodies to them. Now I'm going through chemotherapy. It's. It enjoyable, but I have noticed some symptom reduction. It took almost 4 months, and the chemo itself is hard on me, but the fact that I am responding gives me some hope.

Managing synonyms is huge, too. Even if you can't get to remission, they are coming out with new treatments for various symptoms, so disease symptom management is possible.

[juliebover]

I'm mostly suffering from bowel ulceration and I've been left with heart failure from myopericarditis. I also get a lot of fatigue, night sweats and myalgia. Some days I cannot eat cos I get pain and diarrhoea...sure I'm nutrient deficient. Was only diagnosed last May and then became incredibly unwell and spent summer in intensive care. My Specialist says I need to remember how unwell I have been. What sort of chemotherapy did you try? Did you lise your hair?

[bobthomas1962]

hang in there it horrible I know esp when you ill its good if you have good friends and family support it gets me down as well but in the spells were I feel good which are rare I try to get out and about I hope you have good friends and family to help if you haven't talk to someone

[juliebover in reply to bobthomas1962]

My husband is back at work after taking 7 months off work to look after me. We have an 8 year old daughter who last year was given all clear from cancer but only has 3/4 one kidney. I'm struggling to look after me and her now he's back to work

[leigheff]

Hi Julie

The Royal London will find you a treatment plan that will help with your symptoms.There really good Iv been under them coming up to 6 years now my son who is 18 is 3 years give Sheila Bower a ring she is great she is the admin for the prof Fourtune explain what your going through and your waiting for appointment Good luck I'm sure there sort you out x