Unfair : Isn’t this unfair I rang the rhem nurse I... - NRAS

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Unfair

Vonnie10
Vonnie10

Isn’t this unfair I rang the rhem nurse I asked for asteroid injection Her response was I have a appointment on the 18 th of September so I’m best leaving it so when doc scans me it will give a true reading and won’t be masked by the steroid , she also says that’s steroids aren’t working for me I had one 4 weeks ago but now in horrid pain again, I hate hate it I want my old life back, I sound like a bad moaner but I just can’t handle it no more any tips to help with the pain and stiffness ? she also said hot baths are not good but I feel better from a hot bath ice packs she recommends I envy people who have it under control.

36 Replies

If a steroid injection you had only 4 weeks ago hasn't given you any relief it might be you are one of the unlucky folk who cannot be helped with that particular steroid. Your Rheumy nurse is correct in saying that your

rheumatologist needs to see you at your worst so that the right decision can be made about what to prescribe next.if your DAS score meets the local criteria he may put you forward for a biologic drug.

If you are under the influence of steroids the rheumy will get a false picture.....& you won't get the drugs you need.

I do hope you find an ice pack instead of heat will help.

Vonnie10
Vonnie10 in reply to AgedCrone

I understand this AC but at. Least I get 4 weeks relief it’s better than none , I’m just fed up it’s like a uphill struggle for me nothing as worked for me it’s knocking on for 3 years. Thanks anyway . Hope your not struggling .

AgedCrone
AgedCrone in reply to Vonnie10

It is a horrible time when you still haven't founded a drug that gives you relief. Can you talk to your Rheumy nurse about drugs you haven't tried, before you see your rheumatologist? if she gives you some leaflets on drugs she thinks the Rheumy might suggest, you will know what he is talking about...& be able to ask about them rather than just saying OK,& going off with a prescription.

I knew hardly anything about RA drugs when I was diagnosed 20 years ago,but I was lucky enough to have a Rheumy who explained everything with the pros & cons, & gradually things started to settle down ....but it wasn't quick.

Try to do something to take your mind off the pain....even if it's only inviting someone round for tea . I find if I invite people, even if I feel like hell, it takes my mind off how rotten I feel.

Vonnie10
Vonnie10 in reply to AgedCrone

I’ve tried lots of drugs tablet and biological drugs nurse say she I’ve gone through the list very quickly , I did that in Sunday went to my friends for tea I went shopping yesterday and Monday so with the flare maybe I’ve overdone things I try not to sit in and mope about but today is a day we’re its severe. Thanks I will take your advice and speak to a nurse before hand . X

Vonnie10
Vonnie10 in reply to Vonnie10

I’m not shy I’m one to say wait and what is this and that and so on with the doctor as well

AgedCrone
AgedCrone in reply to Vonnie10

Hope your flare calms down.....I've just got a date to have ultra sound guided injections in neuromas in my feet.....so I won't be needing my dancing shoes any time soon .....ah well - have to download a few more books on to my Kindle!

Vonnie10
Vonnie10 in reply to AgedCrone

Enjoy the books AC I’m hoping for some ivi biological drugs rtx or someth8nk similar x

Get those dancing shoes out ! and if the injections don't work ask for a referral to a surgeon to remove. lol xx

There's the rub ML... I had the neuromas removed from both feet in 2011 and they have regrown. My foot surgeon is giving it a try by injecting them using ultra sound to get the location spot on, but he has warned me I might have to have them surgically removed again. They don't actually 'hurt' as such but they are so uncomfortable .....you are all off balance, & end up putting your foot down at a weird angle ......I'm wondering if that is the cause of the bursitis in my hip and my knee .....I'm having nerve conduction tests to investigate that.

Got to get sorted ASAP, as I want to get my Autumn dose of sunshine next month....really, really hope we don't have a snowy winter like last year...but we have had a lovely day here today on the edge of the Cotswolds....sun was still shining after 4pm.

Mine were removed twice and I'm lucky only left foot involved but I do think its one thing thats sort of left, yet it really does impact on people. It was agony I had to change to an automatic car as changing gear was so awful, never mind the emergancy stop. I'm off the Cypress this month too, need to top up the tan ! lol

What tan? I have only just got straight after my flood in February!

Everything took so long......7 days to get the new water tank,,,,,3 days to fit it...,two months to dry out......if I look tanned...it's rust!

Rust ! I like it . lol But a flood thats awful must have done a lot of damage. ?

When I walked across the landing & squelched I thought I was in trouble, then when I went downstairs & saw water gradually changing the emulsion on the hall walls a darker shade of pale I knew I was.

But the worst bit was I had been in bed for two weeks with the flu and i wasn't in the best of spirits to deal with it. On top of that a couple of weeks later I was covered in a terrible blotchy rash & my dermatologist thought it might be Drug Induced Lupus. Thank God it wasn't but I was very fearful.

But needs must..i had to get on & sort it......I've now got a lovely new hall floor, new landing & stair carpet , a different colour scheme & the insurance covered most of it ......so it's an ill wind & all that, but I never want such an experience again.....ever!

NHS don't want to know ...I'm getting it done Privately....sure hope the injections work, or I expect I'll have to pay for surgery.

But it makes me so unsteady on my feet if it gets much worse I fear falling over..

I am seeing my rheumy on the 17th of next month straight from coming back from holiday. We are only travelling from Skegness not like when we did it from Cornwall. Anyway i am struggling with my back and neck due to severe degeneration of the spine and i am in agony every day and the 17th is the earliest apt i can get. If the steroids are not working darling you certainly need something else. See your gp to see if they can give you something to tide you over until you see the rhumy.xxxx

Vonnie10
Vonnie10 in reply to sylvi

Thanks Sylvi I hope you get that back sorted the pain is no joke I give up mentioning it now myself at home, I feel like a bad moaner . X

sylvi
sylvi in reply to Vonnie10

Theres not a lot they can do for my back i am afraid to say. I get so fed at times like i am today.xxxx

Vonnie10
Vonnie10 in reply to sylvi

I know Sylvi it’s so hard when it’s get you down completely, I envy my other half he is so fit and healthy I get abit jealous if I’m honest, hope you pain is sorted ASAP Sylvi, I have my family here today I really can’t be bothered at the mo. X

sylvi
sylvi in reply to Vonnie10

We had them here yesterday.xxx

Vonnie10
Vonnie10 in reply to sylvi

Maybe you’ve over done it ? X

sylvi
sylvi in reply to Vonnie10

Definitely darling.xxxx

Yuck. I feel for you. Hopefully when you go, they may be able to offer Biologics as they will see you're in a bad place? I know that's no comfort right now. Since I stopped taking Pred 8 weeks ago it's got worse every day little by little. Spoke to the nurse yesterday and I'm going in on Friday to discuss biologics as apparently my blood tests show its active and the levels increasing every month. She advised me against steroids as I have lots of years ahead of me (plus point!).

A bath? I can't walk up a single step. No way I could get in a bath,then I'd drown as I wouldn't able to get out, haha.

It's not so long until mid September and then hopefully, they will be able to help you. Miserable though isn't it...

I know abath but that’s the only way I get relief, I hope you get sorted ASAP it’s ahorrible disease living life in stiffness and pain . X

I was approved to move to biologics on Friday. Keeping everything crossed it will get on top of it x

Wend I prey you get straight that’s what’s imhoping for when I go the 18th can’t stand it no more x

I know exactly how you are feeling Vonnie and wish I had an answer for you. I am in such terrible pain myself and am at the moment in tears with it. I am taking morphine orally as well as having morphine pain patches, tramadol, steroids, methotrexate and hydroxy and still the pain is relentless. I also had a steroid injection in my knee just over four weeks ago but the pain was only relieved for just under four weeks. I had a steroid injection in my shoulder a week ago but there is no difference yet. I have asked about biologics on several occasions but am always told (and this is by three different doctors) that I am not suitable for them.

I sometimes wonder how I am going to carry on like this and I feel so bad about having to ask my husband to do everything for me, even helping me to wash and dress. I am so frustrated with it. I have lots of hobbies and they used to take my mind off the pain, but since I ruptured two tendons in each arm, I am no longer able to do my crafting etc. Life can be so hard. I hope you are able to get some answers and some relief Vonnie and I wish you well.

Why won’t they give you biologic treatment? That’s cruel sound like me but if there the gold standards treatment I want them because I need them, a mate of mine at the nhs who is a manager she reckons play the system and put myself in A&E if needs be , I kinda think it’s them who shout loudest . Hope you get sorted soon . X

Thank you Vonnie. All three specialists I have seen have said the same & that I have more Osteoarthritis than rheumatoid arthritis so I wouldn't help me to have biologicics. I agree with you about keeping on at doctors etc. I asked for morphine pain arches once & was told by a GP that I couldn't have then as they were only for people who couldn't swallow. I asked the Rheumatologist about it & he said it wasn't true & that he would write suggesting I was given them. Then another doctor in the practice prescribed them for me. I think a lot of it is about money.

Have a look at the NRAS site for some advice on alternative pain relief. And if you put pain relief into the search box here, you should get some previous posts with some suggestions about how you can manage the pain better.

I do find that distraction techniques, gentle activity and socialising all help me.

Vonnie10
Vonnie10 in reply to oldtimer

Thank I know it’s best to destact ourselves . But it’s difficult when you struggling , I’ve had ethe worst pain in my shoulders that wakes me up I feel physically sick it’s a disgusting pain . I hate it . X

Shalf
Shalf in reply to Vonnie10

When this RA first kicked off only a few years ago I also had excruciating pain in my shoulders. I am positive the RA triggered the Fibro. I remember lying on the sofa in agonising pain through my body. Could barely walk. It lasted 3/4 days and every other week for months. I was taking cocodamol and several other painkillers at that time. It felt like I was getting stabbed with shattered glass. Awful! These flares aren't quite so severe and to be honest, I am unsure if it's the RA meds I'm on, the regular steam room therapy, my diet or a combination of things that have eased the pain. I think it's wise to take a good look at your own personal lifestyle and try to adjust some things. It is horrible and feels unfair that some of us have to change what we like and do. I would have done anything and I have stuck to a diet that I believe is helping to keep things calm. I also pace myself now because I tire easily. Striking a balance is hard. The days of being spontaneous and full of adventure without planning are ( for now) on hold. I live in hope I will be at that place again... X

Hi I’m currently on nothing drug wise for my RA I’ve been on lots and failed methotrexate failed the usual tablet about five maybe six . Two biologic all failed so currently I’m living on pain and stiffness dihrocodiene is all I take and 10 of amatriptline for sleep , I’ve got a appointment this month for the next plan of action then hopefully I can get back to normal are you controlled you sound like you are ? I just wish for a drug that works . X

Shalf
Shalf in reply to Vonnie10

Hi, not controlled yet. Still have active inflammation but not such severe flares. I am on the third month of Baracitinib 4mg Jak inhibitor biologics. Also was prescribed amitriptyline for sleep and Fibro but didn't get much relief from that. Do you think the plan will be to try another biologic? I know how you feel, it's all very frustrating. X

Sha I’m hoping for anythink that works it’s been knoCKing on for 3 years with no relief albeit from a 6 months when benepali did work I was over the moon delighted went back to work great amazing, then it stopped working, how? Why? I literally lived on steroid injection I tried abetecept, horrible headaches nausea just like and hang over, them lefluimide which made my bp shoot up, prior to that methotrexate tablets then Injection sulphsazine hydroroxquinne i had different side effect from all these who Knew how toxic theses drugs are, so here I am preying I get something sorted soon I’m hoping they get me in the daycase unit for Ivi retuximab, cos I can’t go no longer like this. I thought you was in remission out with your lovely fur babies, everything hurts me joints wise to the point we’re i want to vomit literally. X

Shalf
Shalf in reply to Vonnie10

No, not in remission. Dog Weekend was me referring to many members ( including me) this weekend posting pics of their pups. There were beautiful cats too. That FOTO was pre RA and Fibro unfortunately. Was on all those DMARDS too and was sick as a dog and weak as a kitten! Feel for you, no one should suffer like that. No idea why Benapali would stop working but hope for you that a different biologic will be a success. All the best X

Vonnie10
Vonnie10 in reply to Shalf

Thanx sha I wish you well I didn’t realise your pics were pre can’t even concentrate “not normal” I have two pugs mag and leah my baby’s other half is just talking them fir walk as I cat at present . X

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