Help line closed!

[Nettac]

I've been stiff and in a good deal of pain for months. I stopped the leflunomide recently because it was making zero difference to pain or joint damage. I'd take it if it worked! I was pretty much just fobbed off at last rheumatologist appointment, so I just decided to `suck it up`and get on with it until I see a Prof in December.

However, I can hardly move, and I'm in so much pain, so decided to bite the bullet and phone helpline for advice. NO HELP LINE! Not sure if this is just a blip, or if this facility has been axed? It's a two week wait for a GP appointment.

I could cry!

I might have to insist on a emergency call back, but I hate doing that. Is it an emergency or isn't it? No bloody idea! I'm in pain though, and what can GP do anyway, other than contact rheumatologist, which is what I tried to!

[Hidden]

I would say that pain like you describe is an emergency and cannot wait 2 weeks, Nettac. Let the GP assess you and then they can help you make the next decision with regards to the next steps.

It's not your fault that the helpline is closed and that it takes ages to get a routine GP appt. The system is broken but you shouldn't have to suffer as a result. I hope you get seen tomorrow.

[sylvi]

Go through PALS at your hospital and complain to them as the number could have changed. If not walk into your rheumy dept. and tell someone your waiting to be seen,but you don't have a apt, tell them this is a emergenancy,xxxxx

[Hidden]

Your GP can probably access rheumatology much more directly than you can. We don't have a helpline service where I live so I phoned rheumatology to ask what to do about probable nasty GI drug side effects. The secretary told me my rheum was on annual leave but I shouldn't just wait until she is back (I see her for my consultation anyway on Tuesday) but should make an urgent GP appointment and be seen same day - and they provide GPs with a helpline number for exactly this purpose. She said GPs should be using this service much more often than they are.

So I did as she suggested and GP phoned and was great, got me in on an emergency apt but decided to treat me himself for my stomach problems as feels decision about my medication can wait another week -problem may be unrelated to my medication.

Of course every area is different but your GPs should definitely be able to contact rheumatology about you directly - so I think it's urgent and this warrants a phone call to your GP practice now. Good luck!

[Nettac]

Thanks all

Thought I'd answered Crashdolls post around 2.45 this morning, but must have imagined it!

I was up most of the night with pain. Eventually managed to find some strong painkillers and got to sleep around 4.30 am.

Pretty grim night. I'll try helpline again today, to see if it was just a blip, then contact GP.

[MickeyJoints]

Hi Nettac,

Funnily enough, I stopped LEF about two months ago thinking that the drug wasn't doing anything for me. I think I might be wrong. The severity and spread of the pains has increased on both counts. Walking is now difficult. Each step is accompanied with pain, and hands are no better (although I don't walk on them...)

I've just rang my rheumy nurse to ask about going back on LEF and HCQ. I've made a connection between stopping LEF and massive pain increase - this might be spurious, but there is a lot to connect them I think.

I'd gladly go back to the much less level of pain I was having when on the drugs than what I'm experiencing now without them.

Oy vey.

Go see your GP - for certain. That is a course of action which may produce results, and inaction is not getting you in any direction at all.

MJ

[Clare-NRAS Partner NRAS]

Hi there Please give the NRAS Helpline a call on 0800 298 7650 as if we know what hospital you are under we can suggest some other ways of getting the help you need. You cannot be allowed to suffer like this. or if you prefer to email us you can do so on [e-mail] or [e-mail] and we can call you back if you give your number.

NRAS is here to help so do get in touch.

[Nettac]

Thanks so much.

I've slept all afternoon. Help line still down. I will call you tomorrow.

Thank you.

[Damaged in reply to Nettac]

I would not wait another day Nettac. It could be inflammation which is serious. Can your GP or consultant order blood work ?

[Nettac in reply to Damaged]

Thanks everyone

I'm having bloods done on Monday anyway. I feel a bit better on some hefty pain relief, but I notice I'm very stiff, even if I sit down and try to get up again.

I'm slightly worried about a bowel CT scan I have on Tuesday. I'm going to have to drink some nasty stuff two days before. I'm going to feel awful!

I'll phone doc for more pain relief tomorrow, and wait to see results from tests.