What's Normal.

[wilbertjellyfish]

Hey guys advice required.

I'm 45 yo female diagnosed 6years ago.

Sero negative inflammatory arthritis

Two issues as such.

1 Was told last week that after six years of pred it's likely my body doesn't produce it's own steroids and I'll probably have to take 5mg pred forever.

Anyone else in this boat?

2 What level of pain / discomfort is normal.

I can walk, at times with a stick, slowly.

I still work...no choice can't see a way to afford not too with five kids to look after.

Every day somewhere is sore, mostly knees, wrists, today one of my shoulders is very bad.

I have flares where everything goes to pot but my normal is a low level of pain all the time.

Am I one of the lucky people who's disease is under control , or should I be aiming to be better?

I could accept it if this is normal for people with the condition but I get the impression that I could be better?

I'm on mtx injection 25mg, enbrel and pred

Thanks

[smilelines]

I don’t know what is normal but I hope you can get abit better. I walk without a cane and I am not in pain all of the time.

[Madmusiclover]

That doesn’t sound good. Other drugs are available. Ask your rheumy. The NRAS booklet Medicines is helpful. Free from their website. nras.org.uk/product/medicin...

You could ring the NRAS helpline for support too. 0800 298 7650.

[KittyJ]

1. This may not be the case, I took pred for 25+ years and managed to taper off although it took a long time and many tries to do so. Has whoever told you that tried to taper you off?

2. Many of us still have pain and limited movement but that is due to damage in our joints so if you don’t have much damage you should be in much less pain if your RA is controlled. What does your theumy say about it? Do they think this is as good as it gets for you? Worth having this discussion with them as they have all your information and results of X-rays etc.

Hsve a look at the NRAS publications as there is one about living better with RA that you may find useful.

[wilbertjellyfish in reply to KittyJ]

It was the rheumatologist who said I'd be on pred forever.I think my joints are all ok and I'm on pain killers as well as the rheumy drugs.

I think I'm just a difficult case and there isn't any cure as such for me at this stage.

I'm just having a bad patch of feeling a bit sorry for myself I think. 🙈

[KittyJ in reply to wilbertjellyfish]

Have you tried tapering, I’m not sure how they know you will be on them forever without testing you but I’m not a rheumy 😊

It’s perfectly fine to feel sorry for yourself, it’s hard to be told you will be on meds for the rest of your life, especially pred as that carries risks with it too. I hope you can find something nice to do today or treat yourself and that you feel better soon.

[Boxerlady in reply to wilbertjellyfish]

Can't advise on the pred but I'd say that it's not unreasonable to aim to be pain-free; at my last consultant's appointment he told me that was the aim after I said that my pain was manageable - although we haven't got there yet!

[helixhelix]

I would keep asking whether thsi is as good as it gets. There are other, newer drugs than Enbrel that might suit you better. They of course may not work either but perhaps a risk worth taking?

At 45 I would be pushing hard to try new approaches. Have you neen seen by a pain clinic and done all the self help stuff too? Unless you say this isn’t satisfactory they will do nothing.

[wilbertjellyfish in reply to helixhelix]

Thanks. Enbrel is my 5th biologic and northern Ireland doesn't seem to have pain clinics as such.I'm going to ring nras and see.

I don't want to be expecting something that is just unrealistic but I don't want to live the rest of my life like this.

[helixhelix in reply to wilbertjellyfish]

5 biologics - pigs! You are one of the unlucky ones.

Rituximab seemsyo be the one they suggest when nothing else has really worked. Have you tried that?

And have you thought about asking for a second opinion? Sero-neg is very slippery and symptoms could overlap with other things.

And it isn’t unrealistic until you’ve pushed the doctors to try everything possible.

[weathervane in reply to wilbertjellyfish]

There are chronic/ persistent pain clinics in NI , you should speak to your gp or consultant about referral, im not sure what the waiting list is like. I hope you can get some help and advice.

[Maisie1958]

Hello, I’m a sixty five year old female, now with sero negative inflammatory arthritis since 2021. Previously the diagnosis was polymyalgia rhreumatica 2015 -not sure what changed really . Was on low doses of Prednisolone for seven years and now no pred for the last thirteen months after starting on MTX August 21. Just be aware of slow reduction of Prednisolone and adrenal function returning (cortisol test can be done through GP and acth stim test organised by Rheumy department) - the HU PMR/GCA forum have lots of advice and slow tapering plans for pred. You may have to be on low dose for life but not necessarily. You have had good advice above and certainly l don’t think it’s unreasonable to expect to be free of pain at your age. My lovely consultant said that was their aim. All good wishes x

[wilbertjellyfish]

Thanks everyone for your thoughts and support. I have tapered down to 5mg and was trying to go lower.I'll await the ACTH test and then try to push to lower the pred. It may take a long time but I'm a bit too young I think to give up on my adrenal glands just yet.

[Jackie1947]

No such a thing as normal as we are all different. I hope things get better for you.

[Angels54]

Hi , I have just seen my consultant and he told me I may have to stay on steroids, he also said to alternate them myself as and when I need , I’m on a biological wkly, I also still have pain everyday I think this is the normal now , my joints are quite weak so I need to be more careful now , cant go out without walking stick , now waiting for MRI because of very painful knee , when you not great try to rest when you can , when you pick up just get out and about . it’s always good to offload 👍

[wilbertjellyfish in reply to Angels54]

Thanks for your reply. I'm not glad to hear someone else is suffering . I have several fancy walking sticks from Neowalk. I like to think I don't need them but really I do. 🙈Hope your having a good day.