Hello newbie asking for advice

pink8755aaa80

Hi

I have ankylosing spondylitis I got diagnosed 18 months ago, it was a shock I had not heard of it, I am in my late sixties.

I am struggling with the Biological treatment, I had two infusions of Inflixmab, had eight weeks of Folliculitis, still getting spots everywhere, have left scars, have to use cream from changing faces to help, have depression and anxiety from all of this, have Alopecia and tinnitus as well, not managing at all, rheumatology are not easy to talk with have lost faith in them and they have with me but it’s not my fault I react to everything, i have had three chest infections, two chest infections and this skin infection, amongst the other side effects I had straight after the two infusions.

I am allergic to most antibiotics and can only take two which this year I have had so many I will build up a tolerance and I won’t be able to have them.

the Folliculitis is down below and I have an abscess there as well as cysts now, my head has boils from the Folliculitis, I haven’t been able to wear a bra since the Folliculitis started and now the team want me to start a new biologic called Golimumab which common side effects are skin rashes and ingestion and high blood pressure both of those I have had.

I live in Northumberland uk and hardly any support from a medical team that is supposed to help.

Can anyone help or tell me if I should change hospitals?

so many things have been messed up with this hospital but the things are going it could be the same at other hospitals, would like people’s thoughts on what I should do please

thank you

Natalie

stickywicket

Hi,

I'm thinking you seem to have a lot of allergy problems. Do you see an immunologist for them? If not, it might be worth asking for a referral..

You ask about changing hospitals. All I can say is that large teaching hospitals tend to attract the best consultants - and therefore the longest waiting lists. Swings and roundabouts, really.

I'm sure, as a mere patient, I'd want the folliculitis clearing up before embarking on any meds that might make it worse but we can't always predict these things and the AS does need dealing with so you're really between a rock and a hard place.

I hope things improve soon.

Natash

Hi

thank you for your message, no not an immunologist but on the list to see a dermatologist.

yes I do agree with you, the folliculitis  looks like it is slowly improving but still have a few small ones now coming.

thank you I can live in hope I suppose.