Vasculitis

[tazmoe]

Hi everyone I've been reading this for a gd Yr now, and hadn't posted anything yet but reading people issues has helped me so here we go 3 days after my 40 th bday got diagnosed with small and medium cell vasculitis with systematic symptoms this shit disease has effect me badly, had many treatments some nearly killed me, some nothing but now having to swollow Iv infusion off cymistamide 6mg off mycophenlate daily and 25mg off pred so really I'm asking anyone out there how can tell me is there a end to this or is an on going bus journey that I can't get off

Thanks for reading

[Katie18]

Hi Tazmoe I’m sorry you are having such a bad time. I think most people with Vasculitis have a tough time when they are first diagnosed as the only way to bring this shit disease under control seems to be hit it hard with lots of medication that also has rotten side effects.

I was diagnosed about 6 years ago now & although I’ve had to adapt my life quite a bit - I work part-time not full time, I get tired much more easily so rest more etc - I have managed to reduce the medication a lot & lead a reasonably normal life now. It took over a year of not being able to walk for my nerves to start to repair. I had a relapse after 2 years.

I hope things do improve for you. Patience is certainly necessary with this disease as it’s a slow process. I’m just trying to tell you that there is hope. Keep talking to people through this forum and using the helpline to ask for advice. Best wishes.

[tazmoe in reply to Katie18]

Thanks Katie

Yes it's hard, but the hardest thing I find is there's reason they can give me for why I acquired this shit, I find that hard to swollow, I do get tired like you but have to work full time as well, that only happens if I'm on a gd dose off pred as all the other drugs don't do it for me that's why they put me on chemo for it as it seemed to be remission till May bk hols then came bk with a vengeance over that month put me in hospital again, oh I could winge anyway thanks for replying

[tazmoe in reply to Katie18]

Hi Katie

After my 6 infusions I can tell you now going thru the side effects is now worth it, I can say my rhumy has shot it dwn like a ww2 bomber, I haven't felt this well in a long time, feel normal at last been able to go bk to work and go play cricket whoop whoop so hopefully it got managed now and keep it remission all bloods test are showing remission so happy days how long it's last were never know but il enjoy whilst I can so if anybody out there gets offered this meds don't dismiss it give it some though b4 hand

[Katie18 in reply to tazmoe]

That's brilliant new Tazmoe - hope you feel so good for a long time.

[tazmoe in reply to Katie18]

Hi Katie

Thought il let u know gone bk to square one, chemo lasted 3 wks off feeling fine then woke up this Thursday covered in hives usually I get very upset, but this time been different I think I've given in to it I've run out off puff now with it after all 5he treatments now were we go with it now? I've got to see Rhymney on Monday for a new ct scan and a over nite stay in hospital hope you don't mind speaking to u as I've never spoke to anyone about it before

[Katie18 in reply to tazmoe]

Hi Tazmoe I’m really sorry to hear that. This disease really does require patience and that’s hard as there are lots of ups and downs. Maybe you have developed an allergy to the treatment or some of your medication? There will be alternatives. Don’t give up hope. If they do more tests in hospital the clinicians should have a better picture. Take care.