Private Jabs?: Can I have steroid injections privately... - NRAS

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Private Jabs?

tazman3 profile image
20 Replies

Can I have steroid injections privately? I've had a few over the past 5 years with varying results both into joints and in my bottom. I had a rheumy appointment last week and they gave me a jab to help with my pain. When I woke up next day I thought I was dreaming! I've never had such a fast result and I felt great and managed to get loads of things done.

My RA is getting slowly worse and I have osteo and fibro. I won't bore you with my mental health issues. I'm on Sarilumab at the moment which is lowering my white blood count, as did previous biologics that I've had to stop. It's borderline at the moment so am carrying on for now.

The problem is, they won't give me the steroid jabs very often and I would be able to cope so much better knowing I could have one every few months. Is it a cost thing?

I'm going through difficult probate with very hostile family members and having to find a new home. My family don't believe I'm ill and just think I've got a touch of osteoarthritis. I live alone and I'm struggling The jabs make me feel almost normal and I would be much stronger with this help.

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tazman3
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20 Replies
Neonkittie17 profile image
Neonkittie17

Hi there Tazman, More a health thing than a cost thing I’d say. I had steroid jabs on the rheumy’s advice in the past and at first thought quite mistakenly back in 1995 that I could conquer RA with steroid jabs alone when my RA meds weren’t working enough at first. My rheumy then .. a most senior medical lady, told me giving someone steroid jabs was simply dampening down the RA flames and a temporary process as the good effects inevitably wear off and you’re back to square one with the RA symptoms. She said I need them to be able to move until my dmard kicked in and worked. I have been lucky that injections into my joints usually last for 6-8 months and sometimes more. The general one into the buttock last for around 2-3 weeks for me. The fact you kind of yo-yo with feeling great and then awful is bad for your stress levels too,

I was told it’s a maximum of 3 injections into the same joint per year or if you’re having several joints injecting they look at how many in total you’ve jad. An excess is said to be harmful to the joint, eroding it over time too so that’s not good. Steroids don’t control the disease activity of RA as such which is why we need to get RA controlled via a biologic med or dmard med/combo. Steroid jabs to my joints and an occasional general one got me moving after being at a total standstill on 3 occasions in the last 27 years but you really do want a dmard or biologic to control the disease activity of your RA and to protect your joints from RA becoming OA as it’s eroding your joints.

If you went to a private consultant for the steroid injections I feel they wIll want to know how many you’ve had with your NHS rheumy. They usually want a referral letter too from your GP. I know it’s hard re wanting the steroids and it’s awful to feel in pain and restricted with movement once those injections wear off. I feel the answer is to find an RA med that stops the disease activity of RA and alleviates and stops your symptoms. Once an RA med works well and controls your RA symptoms you won’t need repeated steroid shots.

Do you feel Sarilumab is working enough? Just wondered if it’s done as much as it can for you or if the awful stress is causing too many flares. I had that too when I lost my Mum and had her house and finances to sort. She’d left it all ship shape and I’d been POA too but a family member caused havoc so I understand your stress. I hope you will improve soon and your stress can subside a little at least. When you move away. Good luck. 🙏🏻

madgerac profile image
madgerac

hello,

I’ve had ongoing problems with my right knee for the past 12 months.

It started with a bakers cyst that ruptured! In desperation to try and resolve the pain and discomfort that has continued for a year I went privately to see an orthopaedic specialist.

I had my knee aspirated and a steroid injection on the nhs in July which has been successful. I mentioned this to the private Dr and that I’ve heard you can only have 3 steroid injections a year. He informed you can actually have more and he would be happy to administer that, I do think it definitely comes down to cost with the nhs.

I hope you manage to get some relief for your pain as soon as possible!

AgedCrone profile image
AgedCrone in reply to madgerac

Did you tell that private orthopaedic doctor you were being treated for RA…& more important…. did you tell your rheumatologist you have had a steroid injection from another doctor?

Steroid use is not restricted on cost grounds…..side effects of over use of steroids can be very serious.

HappykindaGal profile image
HappykindaGal

You can. Some physios will give them.

Hippo1234567 profile image
Hippo1234567

I know you can’t have them too often as they weaken tissues and can cause osteoporosis

Sheila_G profile image
Sheila_G

It is for medical reasons. You are only allowed a certain number of steroids because they weaken your bones over time. I don't know about getting them privately but I would think not.

JEM95 profile image
JEM95

just a thought - have you explored oral steroids? I had a short course earlier in the year and they helped hugely.

Runrig01 profile image
Runrig01

it is a health decision re limiting steroid injections. They can weaken bones and tendons over time. More importantly you can develop adrenal insufficiency, which is a rare life threatening illness. I unfortunately developed this due to taking steroids. When using steroids your body stops producing cortisol, the natural steroid your body makes. This causes the adrenal gland to atrophy. Cortisol is responsible for so much of what keeps us alive, stable blood pressure, electrolytes, blood sugar etc. If your exposed to stress, you can quickly become unwell. I have become lightheaded, dizzy, headache, nausea, slurred speech among other symptoms just from getting in an argument. I was diagnosed after having a severe stroke at 52 as a result of an adrenal crisis. I have to carry an emergency intramuscular steroid injection to administer when I’m vomiting, seriously ill or injured, and family have had to be trained to use it. It’s an illness I wouldn’t wish on anyone, i have to think for my adrenal glands and take extra steroids for things that normal people don’t have to worry about, because in milliseconds their body produces cortisol to stabilise things mine doesn’t. I am intolerant of stressful situations, which is the complete opposite of how I was, all due to a lack of cortisol. So there is very good reason to restrict the use of steroids. I know of others who’ve developed adrenal insufficiency after taking just 4 weeks of steroids, or from using steroid inhalers, no route is exempt. I agree with Nomoreheels that you need to look at controlling your RA with other dmards or biologics.

Hopefully once you move away from the situation your currently in, the reduction in stress will hopefully help settle your flare. 🤗

AgedCrone profile image
AgedCrone in reply to Runrig01

I so agree with you 101%.My side effects from just a few Depomedrone injections way back were nowhere near as serious as yours….& Yes…..they give good relief…but I really wish I had never been prescribed them. I would just add for anybody considering it……..getting steroids from different sources without telling your primary doctor is not a good idea. 

Runrig01 profile image
Runrig01 in reply to AgedCrone

definitely agree, it is too dangerous a drug to do that with. Drs aren’t even clued up on the risk of adrenal insufficiency. I had all the classic symptoms including rapid weight loss, dizziness and postural hypotension, my gp kept insisting it was an ENT issue. It was only me pushing that he referred me to an endocrinologist. Unfortunately 3 weeks before my initial appointment, I suddenly was in tears constantly and feeling sick all the time. I was only on 4mg prednisolone and asked GP if I could increase back to 5mg. I was told No, stay where you are till you see endo. 24hrs later I had the stroke, and had to be thrombolysed. The endo said had I increased my dose to get rid of the symptoms, I would likely have averted the stroke. Thankfully if it ever happened again I would follow my instincts. My gp is 60 and I’m his first patient with AI, thankfully they listen to me and liase with my endocrinologist when needed. I also have myopathy from the steroids, which despite being on a low dose these days has never fully recovered, another side effect of steroids. 🤗

I have had to inject this morning, haven woken with a migraine and repeated vomiting. One of my gps is astounded I do my own intramuscular injections, but it’s amazing what you can manage when the threat is one of progressing into unconsciousness

AgedCrone profile image
AgedCrone in reply to Runrig01

I do hope you feel better soon……and I hope everyone reads your posts carefully,& realises there are very serious consequences from steroids.Take care.

Runrig01 profile image
Runrig01 in reply to Runrig01

I should add the reason I was on steroids, that resulted in me developing adrenal insufficiency, was I had polymyalgia and GCA. Steroids are the only treatment for those, as GCA is classed as a medical emergency that can result in blindness. So unfortunately I didn’t have a choice, unlike with rheumatology conditions where dmards and biologics help.

Amnesiac3637 profile image
Amnesiac3637

I agree totally with all those who have had said don’t try to get more steroid shots than a rheumatologist is willing to give you. Steroids are so powerful but they’re not pain killers although that’s the effect you get when you first have them. I’ve been on oral steroids (and have had intra-articular and systemic shots) for over 30 years now and although they’ve helped me immensely they have also caused my glaucoma, osteoporosis, thinning skin and stomach ulcers. There were no biologics or even anything very effective when I started having RA and steroids gave me the relief I needed but I wish I’d never been put on them. They’re a fantastic short-term fix but the problems arise the longer you take them.

More than three joint injections in a year cause erosion and the systemic shots are often only short-lived. Have a good talk to your rheumatologist about what biologic you’re on now and if that’s not working change it but please don’t rely on steroids as you may very well regret it in future. There’s lots of very good advice from others on this post against trying to get extra shots and I do hope you’ll take it. Good luck and hope you get sorted out very soon.

Mall profile image
Mall

This has nothing to do with cost; over use of steroids can cause serious side effects, some of which are debilitating and life threatening, do you really want to add to your difficulties for temporary relief. please do not go down this route. Speak to your rheumatologist and get your RA drugs sorted out, he may even help with an additional steroid shot but this all depends on your circumstances and how much you have already been given. Steroids may seem an easy answer to all your health problems now but they have a very nasty sting in their tale.

Blackberrywine profile image
Blackberrywine in reply to Mall

Many drugs have a nasty sting in their tail to be fair. I've tried all dmards and several bio drugs...all of which caused nasty issues, with no positive effects sadly. Steroids are not great, but IM used twice a year is better than nothing. Maybe better for some people than jabs into the stomach every two weeks of a biological. Cost benefit for each person I guess. No easy answers...at least, I've not found any!

I wouldn't get more than 2 shots a year intramuscularly, although I've also just had both shoulders done and am awaiting steroid into sacroiliac joint. All with docs approval, as nothing else works.

oldtimer2 profile image
oldtimer2

Steroids are cheap. They work marvellously for some people like me and you.

The side effects are not at all marvellous. Look them up and you will realise why their use is limited.

Neonkittie17 profile image
Neonkittie17

Jeremy Vine R2 is on now re steroid pills and jabs (1310 Monday 14.11.) with the doctor they have in medical Mondays.

Blackberrywine profile image
Blackberrywine

I understand how you feel. IM and joint steroids are the only thing that work for me. I've tried many other things. I think the concern is with bones, and diabetes etc.

TheBoys profile image
TheBoys

I think as long as the injection is part of a Rheumatologist managed plan - it has it place.

Most of the drugs prescribed will have varying side effects or impacts - and sometimes none at all. Most of our experiences of the condition are personal and unique to us with some having a severe experience to others who are lucky to be in remission a lot.

So ultimately I don’t think there’s anything wrong as long as they are managed and planned.

I have around 1 a year on average into my persistently bad left knee- aside from that I get by with MTX. (I do have persistent issues with that and I want to come off it as am worried about lung damage long-term and am fed up with fatigue etc etc) and go back on Hydroxychloroquine as had no real issues with it. I’ve also had recent respiratory/cardiac problems and don’t really like having to take a cocktail of tablets over the week.

But talk with your Rheumatologist and see what works best for you.

tazman3 profile image
tazman3 in reply to TheBoys

Thank you all for the comments and it is nice to know that I'm not the only one who gets any kind of relief from steroid jabs only. The one I had last week was ok with my Rheumy and I think quite a few of you thought I was recklessly wanting to help myself to jabs behind his back! I am following all other instructions and have done for the last few years. All I wanted to know was whether it was possible to get temporary relief when I just can't cope.

I do understand the health risks, but I have taken some pretty toxic stuff that has made me feel lousy. All the first go-to meds for RA have done nothing for me except give me pounding headaches and stomach cramps. So I am carrying on with the latest bio and just take ibuprofen. I tried pred at the start of my treatment before they were sure of my diagnosis. Within 3 days I started to bloat and could feel my mood turning black. It did nothing to relieve my pain and I thought I would never feel normal again.

Thanks again.

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