ankylosing spondylitis

jan5987

Hi everyone 
i am 63 I have osteoporosis and since July Ankylosing Sopondylitis.
very painful condition.
I have fibromyalgia/ME and tinnitus  and IBS.
I have now been given biologics as other types of medication affect me. 
I know all medications have side effects but two pages of seriously side effects and family history of cancer and heart attacks and strokes as 1 in 10 that are common are really worrying me, the rheumatologist hasn’t explained properly about this medication and the delivery didn’t even a booklet and because I didn’t know how to store them I can’t use them anyway.
she said to me if you don’t take this you will end up in a wheelchair was the last part of the conversation.
anyone has AS
Thank you

vikingqueen

   My daughter has A.S. and manages it quite well with a biological. Whoever supplies your injection should have explained how it should be stored and also sent a nurse round to monitor your 1st injection.  This is because some people can have a reaction to it. 

    I also inject a biological for a different condition, mine are hospital led but are sent by a company called Sciensus ( formerly Health Care at Home).  I can say that they worked brilliantly for both my daughter and I with no side effects. 

 Get in touch with your rheumatology team and explain you have had no monitoring and also get in touch with whoever supplies you to say you have had no information. 

  

jan5987

Hello 
thank you for your message.
yes that’s the company, had no information booklet for a week, no wipes, no cotton well, first it was the nurse and then it was the hospital and then it’s all changed.
that’s she does and maybe because she is young and no family history, it has interactions with my tablets I take.
I already did that and five days later received a box with booklet in and two sharp boxes I have three now, day after box with cotton wool and day after box with wipes.
rheum hardly there and info I had well I could Google it better and I did but by that time the injections were useless, no communication with Gp as they have had no information on me since September and that was to say I had flu shot which was at boots and rheum and Gp don’t communicate and never seen a Gp for well over two years and all on the phone, takes an hour to get through and I rang on Monday see if they had anything from rheumatology and I was told no phone appointments till next Thursday. 

Whole system is ridiculous.
yes changed Gp surgery all the same up here.
rheum mine I got told was on holiday again.
I just rang.!!!

Alex_Alumni

It sounds like the lack of communication from your GP surgery has been quite frustrating @jan5987, how have you been finding managing the injections since you last posted? 

jan5987

Alex_Scope said:

It sounds like the lack of communication from your GP surgery has been quite frustrating @jan5987, how have you been finding managing the injections since you last posted? 

It’s crazy and fed up with it
i haven’t had the injection as have had no proper explanation on it and decided not to have it and yesterday I spoke to a rheumatologist not the one I see and explained about lack of communication with everything and no education on what I have and how to help, I also joined an American helpline group and found out more information from there then rheumatology and the Gp I spoke to him eventually, he had no info on me since July and said information is taking time to come and I said but I have missed appointments and letters not arrived in time, he said there is nothing he can do and the system is like that and then said people with cancer are even have to wait months now, I said yes I know but I am asking for me and information and have nothing so he said it’s rheumatology your eith have to speak to them, I give up, I said my mental health is getting worse and he said no options but your having counselling I said yes but finishing soon he said you will have to ring up again.
it’s just useless and terrible times we live in for everyone who is disabled and elderly.
Thanks Alex