AnkylosingSpondylitis

janisa

Hello

I was wondering if anyone has AnkylosingSpondylitis and how they manage it?

I was given biologics first infusion caused bad side effects and second time infection after infection and now on my 5th infection and not managing very well, I got diagnosed last summer.

I don’t have a good rheumatologist team they are not understanding at all, the Gp is not helpful if I ever see him and doesn’t understand.

In less than a month I have another infection, 5 infections and third lot of antibiotics, yes I need treatment but they have given me Golimumab which is a new medication they told me and don’t know the long term side effects.

On the leaflet it says if repeated infections then I may not be prescribed, they don’t listen to me and seem to be clutching at straws.

I am in the uk.

What can I do? 

I can’t keep getting infections and can’t keep avoiding people which I am doing right now.

I am 64 and it’s very upsetting not seeing my daughter and two little grandkids.

Any advice as talking to rheumatologist they say I have to have this, I have no choice in the matter.

I am looking at changing what I eat, acupuncture and lady on the helpline really nice said acupuncture and omega 3 fish oils.

anything else please?

Thank you 

Jan

Dannii28

@Evening @janisa

Welcome to the Online Community Forum, so pleased you have found us, you will find there are lots of resources and information available to you, please feel free to have a look around the website.

I see that you are suffering with Ankylosing Spondylitis (AS), I personally do not have any experience with this type of arthritis but I am sure that are a few people on here who do understand what you are going through and may be able to offer some advice.

In the meantime I have attached some links below which you may find useful.

https://www.versusarthritis.org/about-arthritis/conditions/ankylosing-spondylitis/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/golimumab/

I would also suggest having a look around the other charts as there might be other things that you may relate to and be able to get additional support on.

Let us know how you get on

Dannii (mod)

MrDJ

Hi @janisa

Sorry to hear of your struggles at the moment.

A good to great team is a must have with any form of arthritus which it sadly sounds you dont have.

I was diagnosed back in 1985 with OA first then 2 years later AS but i have rare symptoms. My SI Joints fused withing 3 months of having xrays which they were shocked to see and even more shocked to see my spine not fuse totally. I had a HLAB27 blood test which came back positive for Anky Spon.

It wasnt until 2001 they put me on methotrexate 20mg and anti tnf biologics. That was Infliximab for first 15 years then when licence was up the cheaper bio similar remsima.

Yes we are all much more prone to infections so im still wearing a mask since covid started but sadly as i work at a hospital ive been stuck working from home as they say too risky for me to be back at work. coming upto 4 years is taking its toll.

What sort of infections are you getting, is it cold/flu chest etc. Also have you had covid in the past.

It shouldnt stop you seeing your family though if you wear a mask but caution is always best so ask them to wear masks when you vist as well.

sounds like your gp is a waste of space but i would try again and ask could you be sent for a second opinion at another hospital as they may be more thorough in finding out whats going on.

good luck and keep us posted.

Jase

My gp mentioned AnkylosingSpondylitis when I. Mentioned my back was seizing up, in fact my back pains. Is worse than the pulmonary sarcoidosis pains... Still another 6 months before I can Get To see A rheumatologist for the hips shoulders hands, I'm basically Stretching and twisting every morning now, which seems To help