Hay gang,

Please could you help with some advise or pointers on what i should be doing/asking, i have been loving reading your posts but not found answers that satisfy me yet.

I have just had a meeting with my new rheumatology doctor (Dr. Shirley Rigby UK Warwickshire) and although new to me as my normal doctor who was amazing has retired (Dr. Nigel Dunn) I did not feel very confident still with her after my 4th meeting.

Firstly i do/did not have confidence in her due to I keep telling her it feels like i am having flairs but my bloods dont show much and I see you guys always mention ANCA and i have only had this once that i can see in my blood history online. it seems that everything i tell her is ignored until my bloods confirm it? They test me every 6 weeks for the below, if i feel bad i take myself in for a test regardless of the 6 week tests:

Haematology:
FBC
PV

Biochemistry:
Renal
Liver
CRP
CGP-V (not sure on this acronym due to Dr's hand writing could be CSP-T??)

They have just started asking in the last 6 weeks to tick Immunology box IgG,A,M for each infusion i have and I have started to tick the ANCA box although did not get that result online when i looked.


I have just had 15% of my right lung out due to lumps 10 weeks ago and about to be booked in for sinus surgery as i have a nasel bone problem and have a nasal polyp they want to remove and been getting very bad head pains.

I am getting bad night sweats that soak the sheets again, limbs are hurting muscle and joints, very itchy head and upper-body with random spots i cant leave alone, but mostly in my hair lines.

Since they have started doing the IgG,A,M test they have canceled my Rituximab infusions as the levels are too low, i have now convinced them to give me the infusions this time but Dr. has said she wants to move me on to Imuran and take me off the Rituximab infusions as my renal bloods have been rising above normal levels. They pointed out that the only reason they used Rituximab was due to still wanting to have children and at present have 2 and not looking to increase the clan at the moment.

I am very nervous of the above move as its an unknown for me with Imuran and i like the infusions as i have been working full time and not had time off work apart from surgery recovery.

I am a little grumpy as i write this as i am struggling to hold my 8 month old son for more than a couple of min's and has now started to affect my job, I am sure this is down to the fact i am going to be 8 weeks late on my infusions this time and my body is reacting.

I have discussed with the Dr. about a referral to Dr David Jane (Uk top Weggie DR) and she mentioned she shares a patient with Dr Jane at the moment and has a few Weggies on her books (passed from Dr Dunn's retirement) but I did not confirm the referral as stupidly was just interested in getting my infusions, she was really understanding and almost thought we clicked on our appointment at the beginning of the week, but in receiving the review letter from her about our meeting this week it does mention my concerns and that i think i am having a flair, but and there is always a bloody BUT she keeps saying throughout the letter there is no evidence of active vasculitis and repeats it in most paragraphs of the letter.


So my real question from all the above ranting/info is what is peoples feelings on Rituximab V Azathiioprine (Imuran)?


It makes it harder to accept that when looking online at my blood results 50% of them say Abnormal.... Wish i understood the blood results a little better and is my next research mission to work out what it all means.... Happy to post/pm them if anyone has blood skills here?

Ow this is rubbish and if i could have any super power it would be the power of healing!!!!!!

Thanks in advance for advise and help you beautiful lot :-) xx