What meds options next

Jo90

Hi
Wondered if I could seek some advice from the collective wisdom that resides in these parts.
I am sero neg,have been for over 10 years but diagnosed about 2 - 3 years ago. Initially I was having regular problems with my knees and occaisonal issues with chest/breathing. After taking all my meds (naproxen, plaquenil and of course Lansaprazole) dutifully, it is clear that over the last 9 months plus, it is not enough. I have had repeated chest problems (rushed into A&E on Sunday and had to hand my daughters to next door neighbour in the interim) and given morphine, which helped very nicely ! It is a general consensus that I have costo chondritis, and it is still currently hurting a lot.
My question, after a chat with my GP today to get more cocodamol, was around what meds would be the next step, and he casually mentioned Humabs - they are the meds of last resort. Is that remotely true ? Aren't there a lot more options out there ?
I have an appointment with my rheumy consultant next week and am of a mind that the only outcome that will get me out of his room is better meds.
Any wisdom welcome !
Thanks
Jo
x

barbara12

Hi Jo
Sorry I have OA so cant offer any advice , but just want to add my support and wish you well with whatever meds you get next, its so worrying when you dont know what the next step is, or how well it will work.
Good Luck x

Jo90

Many thanks Barbara :-) appreciated

xx

stickywicket

I've not even heard of Humabs. All I know is that the rheumatologist treats my disease (RA) and the GP deals with the pain. You don't seem to be taking any paindullers other than the anti-inflammatory. I don't know if there's a reason for that as I know very little about costochondritis. I suppose there might be a reluctance to dish out anything opiate based in case it messes up your breathing.

I'd certainly talk to the rheumatologist and make sure (s)he knows about the visit to A&E. It might be that something needs adding to the Plaquenil and the rheumatologist would be the one to do it. If, however, it's just a matter of paindullers then the GP would be responsible (though a word from the rheumatologist might help). Can you see a different GP if you don't hit it off with this one?

Jo90

Thanks Stickywicket, to explain something I missed, I have IA. I do get paracetamol (which is next to useless) and also have cocodamol on my prescrip, but only take them when things are bad. I have to moderate when I can take the coco's because I am sole carer of my 2 girls and have a 25 mile drive to work, so taking 2 would leave me too 'spinny' and disoriented to be of any use to anyone, so I save that particular 'treat' for last thing at night if I'm in pain.
Overall impression is that this particular GP was too out of touch with this field of medicine to know his onions. Can't really spare the added time off work, and the physical challenge at the minute of going back to see another GP.
I guess I need to leave it to the experts (that would be my friends here and my rheumatology team)!
Jo

suzygirl

I wish you well for your rheumy appt next week. I have had costo and it is very painful. I found my trusty hot water bottle helpful and you have to be careful when twisting or lifting. Rest as much as possible it is an inflammation of the cartilidge round the ribs (I think from memory!).

I was started on Plaquenil and tried sulfasalasine and am now on Azathiaprione. There are so many meds for your rheumy to try. Be specific when talking to the rheumy, explain just what you are prevented from doing and how badly it inteferes with your life.

A good gp is vital, so talk to another gp in your practice to see if they can offer more help.

tillytop

Hi Jo

So sorry about your chosto.... sounds extremely painful.

I think it is quite likely that your GP is out of touch here - and I wonder if
his "humabs" is a muddled mix of "Humira" and "mabs" (which is how my GP
refers to the biologics - Infliximab, Adalimumab, Rituximab etc). He's always saying to me "remind me what mab they've got you on now" :roll:

If this is the case, then certainly the "mabs" are not drugs of last resort by any means - they are just newer (and much more expensive) meds and usually not prescribed until a few of the other DMARDS have been tried first.

I'm really pleased you have a rheum appt next week because, as you say, it really does sound as if your current meds are not doing enough for you. But there are lots of other DMARDs out there apart from the plaquenil and I would say that if plaquenil is the only DMARD you have had so far, you are far from being in the "last chance saloon" meds wise!

I have found over the years that GPs often have very limited knowledge of inflammatory arthritis and sometimes think they have more knowledge about it than they do. I know that I know far more about RA than my GP (I should do after 17 years) and he comes out with some absolute "stonkers" sometimes and I dread to think how I would feel if I was new to RA and took what he said at face value.

So I wouldn't start worrying about "drugs of last resort" - hopefully your appt next week will give you some positive answers about what next.

Thinking of you - and hoping your chosto... (sorry can't spell it) improves soon.

Tilly xxx

Jo90

Thanks Suzy and Tilly.
Suzy, yes you've remembered it spot on - it is the cartilege in the ribcage - feels as though I have been kicked right in the centre of the sternum by a mule !
I think you both have hit the nail on the head in terms of the GP not knowing this very special type of pain and us learning a lot more ! And many thanks for your reassurances around the fact that I am not in the last chance saloon just yet. Big relief
<Phew> I may not have to endure these symptoms without a bit more medicinal relief. I solemnly promise I will write down all the things that I am struggling with and stay in the consultants room until I have explained it all - honest
Thanks for all replies

xx

Jo90

Just out of my rheumy appointment and I have now been prescribed Sulfasalazine to take alongside my hydroxy. I have been advised to wait until the local rheumy team can talk me through it and ensure I understand the need for regular bloods at first, but this is the direction my meds are going.
I can't help thinking 'sulphur' - am I going to end up with, shall we say 'brussle-sprout-type issues'?!
I will trawl through the forum for others reports on this, but welcome anyone else's experience of sulfa.

Thanks

Jo

stickywicket

I've never done sulph, although it's one of the usual DMARDS, but, from what I've learnt on here, I don't think the 'sprouts problem' is an issue just the enhanced colour of your wee. The bloods are very important for all of us on DMARDS as our bodies don't necessarily register the early signs of infections etc until they've taken hold. The bloods give a good 'portrait' of what's going on, or not. i hope the sulph helps. It does for a lot on here.

helpatpol

I take sulfasalazine and have not had any problem with the 'sprout effect'. (that made me laugh) However your urine does become a quite bright - yellow/orange colour. I have had no noticeable side effects from this drug but no noticeable effect either so now on methotrexate too. Hope it works for you.