Golimumab

lynnemarie1123

Hi just got back from a rhumy app. After assessing me and examining me they have decided to take me off sulfa and move me to biotics ???? ( this word scares me) and is putting me on golimumab ??

Anyone on this drug and how do you find it ?

Thankyou X

stickywicket

Golimumab is a 'biologic', not 'biotic'. I don't think there is any such class of drugs as 'biotics' only 'antibiotics'. I've not taken golimumab but you can find info on it here https://www.arthritiscare.org.uk/managing-arthritis/drugs and, if you enter it in the AC search engine, I'm sure former thresds will come up. I hope it works well for you.

lynnemarie1123

Apologies for getting the word wrong !!! I'm on a bit of a state.

[Deleted User]

Hello lynnemarie1123
and welcome to the forum. It is natural to be in a bit of a state when you are confronted by new drug treatments that you don't know anything about. As stickywicket mentioned Golimumab in a biologic drug and it is one of a group that is used to treat arthritis. Here is a link to the factsheet https://www.arthritiscare.org.uk/what-is-arthritis/resources/228-biologic-drugs
There are lots of people on here who take biologic drugs and I think some are on Golimumab too. I am sure they will share their experience with you.
Best Wishes
Sharon

lynnemarie1123

Sharon,

Thankyou for your message although I am not new to the forum. I've been here for a great many years.

I was simply asking for support on the new drug. as I found my new consultant quite hard to understand which is why I had the biologics word incorrect.

Was previously on sulfasazaline since diagnosis in 2007. So this is a new chapter to me.

Thankyou for the links. I got no information from the rhumy so any support is greatly appreciated.

[Deleted User]

Hl lynnemarie1123
apologies I am in a bit of a steroid haze myself presently, sorry about that :oops:
Sharon

lynnemarie1123

Sharon. X were all in the same boat I'm sure xx hope you have a nice day xx

LignumVitae

Hi Lynne,
I realise you probably didn't take lots in at your appointment but the chances are that you going to have to have a chest x-ray, more bloods and an education session before you start the meds. I did for my biologic therapy and as I understand it, those things are standard fare for being allowed to start it. I think golimumab is Simponi by trade name so a quick google should bring up loads of information. I think it may be a transfusion one rather than an injection one but I could have that wrong. I was sent away from my appointment where a biologic was agreed on with a thick binder of information, did you get similar? The Arthritis Research website has really clear and easy to understand information about each of the drug options so that might be a good place to start reading up on things. It's really plain English and non-technical with short paragraphs so I tend to use it when I am struggling to get my head around something. It's great that you have been offered golimumab, I've found that generally, the right biologic can make quite a difference to my symptoms and that gives a lot of control. I'm back on enbrel after a brief period on humira which didn't work for me in the end. Good luck!

lynnemarie1123

Hi Lig, Thankyou very very much for your lovely message.

No I came away with nothing which is why I was fumbling around in the dark earlier. I have however done some reading up this afternoon. I had some bloods done today and was told I needed X-rays etc ( had to take my son to cricket training so couldn't stay) he's making me an appointment to see the rheumatologist nurse in a few weeks so hopefully I'll have X-rays etc then. I'm hoping it is infusion as I have a phobia of needles and know I'd stress about injecting myself.

Ivevthiughtvof nothing but all day, but know I can't carry on the way I am - so I'm hoping it's the magic drug for me. I have a full on job, children and house to look after - I don't have time to be in pain and stop. But do think I need to review my lifestyle and start taking time out for myself. X

Thanks again :P xxx

stickywicket

lynnemarie1123 wrote:

Ivevthiughtvof nothing but all day, but know I can't carry on the way I am - so I'm hoping it's the magic drug for me. I have a full on job, children and house to look after - I don't have time to be in pain and stop. But do think I need to review my lifestyle and start taking time out for myself.

Please, PLEASE take the time between now and starting golimumab to do just that.

There are no 'magic drugs'. Some work better for some of us and others for others but none will work if we constantly push ourselves to the limits.

You say you 'don't have time to be in pain and stop' but arthritis is deaf, blind and deeply uncaring about any of that. If you don't respect its power and the limitations of the drugs you will find out the hard way how much time you really have.

I promise you I'm saying this to be kind, not unkind. It's only nine days ago that you wrote 'My body is screaming at me to stop', two days since you wrote 'my body gave in. I couldn't get out if bed' and yet, when you got your much-needed appointment yesterday, instead of going for the required x-rays you prioritised your son's cricket practice :shock: I doubt there's a more fanatical cricket fan on the forum than me and I reckon I was a reasonable Mum when mine were young but, really? Do you really want to teach him that his cricket nets are more important than his Mum's health?

You're not Superwoman, Lynnemarie, though we've probably all tried to play the role in our arthritic lives. The harder you try to be Superwoman, the more you are doomed to failure. You are a hard-working, very caring mother with a nasty, incurable disease. If you try to ignore the latter it will have free rein and take over your life. The new meds regime is a big opportunity to redress the balance and get back some control. Please take it.

lynnemarie1123

Sticky, you are completely right. Although I've been diagnosed nearly 10 years at 30 I've never come to terms with my condition. I've always pushed it to the back of my mind and thought I'd be rite! X I've refused to let it rule my and my families life.

I try to protect my children from it. And like you said be superwoman because if I give in to it its won ! ( if that makes sense). I don't want this disease and I don't want it to stop me enjoying my life.

As for my sons cricket - he was at training camp. I allocated a hour to go to consultants. Not knowing if need bloods etc. It was the consultants idea to leave the X-rays til my Rhumy nurse app to check infection etc then it would be fresh ready for me to start the new meds. ( of course if I needed to have them then n there I would)

I am aware that this year has been out of the ordinary. ( that can't be repeated) like I said I need to address my lifestyle and accept that I have this disease and out steps in place but it isn't as easy as that. My husband is completely un accepting of the situation - his mum died when he was 14 so he closes off from the situation - he is aware I'm in a lot of pain - but puts that down to been my fault of doing too much etc ( but not helping either).

It's a whole mess and I'm trying to struggle thru whilst working full time, juggling family, pets, house, friends etc. Anyway I have the summer off to relax and reflect and get myself well.

After all non of us live in ideal world.

I do use this forum to voice my worries and concerns - sorry if that upsets people - but I have no other outlet.

Lynne X

stickywicket

Lynne, please use the forum in whatever way it helps. There is no right or wrong way. I can't answer your post properly right now as we have friends coming for a meal - and arriving anytime now - but I promise you I will later / tomorrow when I do have the time it deserves. Meanwhile, have a few of my rare ones - ((( ))). You sound as if you could use them.

lynnemarie1123

@ sticky xxx

stickywicket

Right, where do I start

It's very good that you don't want arthritis to rule your, or your family's, lives or to stop you enjoying life. That, in my book, is a great basis.

The problems arise if you try to behave as if it's not there at all. That doesn't work. Arthritis is sneaky and we have to be just as sneaky in how we deal with it. If you've never read, or haven't read for some time, the blog post 'There's a gorilla in my house' now would be a perfect time to read or re-read it. It's fun but oh so true. http://batsgirl.blogspot.co.uk/2008/04/gorilla-in-your-house.html

Every mother worth her salt wants to protect her kids from all nasty things. But we've all met adults who were so protected they've no idea what real life is about. I tried hard to protect my two but I couldn't work due to the RA so there were lots of things their friends had that they didn't including holidays abroad. I learned a big lesson the first time I had to go into hospital for 3 weeks. The boys were 8 and 11. By the time I got back there was a rota of jobs attached to the fridge. Mr SW was working full time so everyone was expected to pitch in. And they did. And felt useful and valued for it.

When they were young, before I got my TKRs, I spent a lot of time in car parks or on park / museum benches. They and Mr SW would be wandering round a castle or a zoo or somewhere which was inaccessible to me as I was too proud to use a wheelchair. But we all had fun. I had a rest and we'd eat somewhere nice afterwards. Now, my 10yr old grandson loves pushing my wheelchair (rather more than I love being pushed by him ) and the 6yr old loves sharing it with me. There are different ways of enjoying things together.

I think a big thing will be getting your husband on board. Men are a different breed. We can tell them we're in pain one day and they're rather surprised to find we still are the next. So, they encourage us to see the doc and 'be fixed'. Yeah right :roll:

We have to find, and keep on finding, a balance between bleating on about pain and not shutting them out completely. If we pretend all is well then that's what they'll believe. Or, they might feel all is not well but we don't seem to want to talk about it. The occasional heart to heart, preferably over a nice meal and a glass or two, and without the children, can work wonders. And, to be honest, given what you've written, I think when you say “ he is aware I'm in a lot of pain - but puts that down to been my fault of doing too much etc” there is probably far more than a grain of truth in what he thinks. I get the impression that quite a lot of your pain is self-inflicted by your lifestyle. We do have to give up things, to lose the battle in order to win the war. It might be interesting for you to get his take on things. Ask what he'd suggest you do / don't do?

You sound a bit like Mr SW in allowing one hour for a consultant's visit He's inclined to never leave enough time for anything. Yes, an hour if all goes exactly to plan (whose plan?) and nothing goes wrong. I tend more towards writing off half a day. If I'm out sooner then brilliant. If not, I've lost nothing and gained several chapters of a book or some interesting conversations.

I do feel you just need to accept this arthritis as real, ongoing and needing to be dealt with. Be adaptable. Be prepared to do things differently and let go of the unnecessary things (eg most housework ). You'll have less pain, more energy and more fun. And your family will appreciate that.

Now please, do read that blog