Hi everyone. I have been having the above steroid jabs in my bum. The Rheumatology Nurse does one at the hospital (& between her & my Consultant I have the usual checks). Three months later the next jab is done at my GP Surgery. My last jab was booked at my surgery for 12 July.
Fine. Then I received a letter from the hospital with an appointment for mid August! I phoned to query and was told that they had received a letter from my surgery to say they can no longer do them! Of course, I phoned the surgery to ask why they cannot do them, to be told by the receptionist that she was sure all of the doctors were able to perform these injections.
To cut a very long story very short, I'm no further forward with this, have written a formal complaint to the surgery (copied to my Consultant) having seen another doctor who said the dose was too great for him to administer! I'm in so much pain as these steroids (yes, I know the risks) give me quality of life and I can walk the dogs!
Is there anyone else out there who is having to fight for essential medication in which can only be described as a 'funding battle''
I hope the rest of you are feeling better than I am. Lots of love. Nicky (TempleofDoom) xx
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Yes I have these, but only at the hospital. I was told by my GP that only a rheumatologist or specialist nurse can give them, I think because of the need to get the injection site correct. She thought no GP was allowed to give them. May be the same for you or maybe it differs depending on local rules? You could ask your hospital if they can take over the extra injection?
Thanks for the reply Lucky. I already have my next two booked for October (rheumatology nurse) and January (Consultant) and his secretary has slotted me in for later on this month.
I'm really getting to the point where I'm in so much pain again, walking bent almost double, crawling up the stairs, etc.
I'm also sleeping a lot (but I do take 75mg Amitriptyline). I only woke up this morning at 11:00, but had to lie down after my shower. I'm trying to watch athletics but I'll have to go back to bed soon, I think. My only other medication is 10ml of Morphine when it gets really bad. Oh, and my hair's falling out. Happy days, I'll have to start looking for wigs soon. ToD xx
I've had these injections from both my GP and the nurse at the rheumatology clinic, but they told me they only allow 2 consecutive injections ie they see it as a short term measure to tide you over when starting medication or when changing medication.
Yes, I was always told that but I had lots of bad reactions on various other meds, these 120ml of steroid in the bum really change my life and work almost instantly. I'm taking chances, I know, but I'd rather die early having had some quality of life. 🐕🐕🐕 ToD xx
I have had 3 depo injections since the end of January the third end of June. I was informed that as I had a few joints involved it was better to have one in my backside. At my last review in July I still had problems with my Right elbow so an appointment was arranged for me to have s steroid shot into my right elbow by the specialist nurse not the doctor. I was also told that 500mg of depo in total each year so after this injection I have only 100mg left until the end of January. The doctor I saw said this steroid injections should last 3 months but for me it lasts only 6 weeks.
My GP always tells me if any concerns with RA need to contact Rhuematology service.
Yes, I only ever had one injection into an elbow joint at my (lovely old) GP surgery & fainted. Ha ha!
The next I had into a knee joint along with anaesthetic just before a knee replacement.
Since then, it has always been IM in my bum. I suppose as I have osteo of the spine and fibromyalgia as well the steroid just helps calm everything down. ToD xx
When I first started having these steroids I was told I could have 2 per year but now it seems I can have 4 x 120. I do get almost immediate relief (& an almost immediate spare tyre! ToD xx
I had several jabs in my shoulder but now I get pains in neck, ankle, wrist as well as shoulder Would jab in bum would stop all this. I was recently diagnosed with osteoarthritis.
You would have to speak to your rheumatology department to see what they think. As well as RA, I have osteo in my ankles & thumb joints, fibromyalgia & a degenerate spine. When I have IM 120mg of Depo-Medrone injections in my bum, they do calm everything down. They gradually wear off but usually give at least 4 weeks ‘quality of life’ sometimes longer. A few people on this forum are horrified that I have these injections every 3 months but they are my lifeline as I react so badly to other treatments. Good luck. I hope they will at least try you with one. Nic xx
Hi TempleofDoom, thanks for your reply. I was only diagnosed with osteoarthritis this year. In fact when I got the GP's letter I misread it and thought it said osteoporosis which I knew I had. It was only when when I read it again a few days later that I noticed the word arthritis. My rheumatologist only knows about my osteoporosis at the moment. How long does the jab work?
I also have them in my bottom but was told only allowed 3 per year. I have a couple over the last few years at drs but its very hard to get them to agree to give me one
Sometimes I feel like a new person the next day but other times it can take up to 48 hours to work. Of course, that’s me & everybody’s different. It’s definitely worth it for me but with you having osteoporosis, they may decide against it as it can affect bone density. I had to have a bone density scan before I was cleared to have steroid injections & luckily the scan came back OK. Good luck. Nic xx
Here in France they shrieked in horror at the idea of shoving 120mg straight into your bum (what I have had in UK). They worry about the effect on the muscle in your bum. Apparently it can cause a permanent dimple or blotch but since my days of parading in skimpy bikinis are long past not sure I'm that bothered......
But I wasn't going to fight for an injection so accepted the infusion with gratitude as was having a bad patch. Takes loads longer, as the same amount is slowly dripped into a vein over an hour or so. And has to be done in a hospital, and you are limited to the equivalent of 1mg a day, so 3 x 120mg infusions a year.
Hi Helixhelix. I too looked at the bit about the 'bottom dimple'. I had to laugh! No way will I ever be flashing that (not that I did, of course). Yes, I know how risky this injection is but had loads of tests and a bone density scan. I've had so many awful reactions to other drugs including the tablets. Doesn't it seem unfair that you find the thing that works and there are so many scary side effects. I've never been lucky enough to have a side effect of weight loss though. Any recommendations? ToD xx
Perhaps the GP need authorisation from your rheum dept as it is not their standard dosage. My rheumy nurse would fax them to request the higher dosage other wise they would only give a smaller dose which would not last very long.
Yes farm123 it was all agreed 2/3 years ago. I know exactly what's happening. It'll be all down to funding, yet on the practice website they boast of having been refurbished, having an emergency room and rooms that can be used for procedures (including vasectomy, ingrowing toenail surgery & steroid injections)! It looks as though they've had money allocated to improve the surgery but not enough trained staff to use it. ToD xx
I had Depo jabs before I was on RTX...but only given by Rheumy or senior Rheumy nurse.
For once it's not cost driven by your GP...& I wouldn't rely on what the receptionist said,
It has to be given by someone who really knows what they are doing & these days rheumies usually give it in the thigh to avoid hitting nerves in hip or buttock....not many GP's are keeping up to speed on all these specialised injections.
My GP would not give it to me....always referred me back to Rheumy...& I am very pleased he did.
I have been in pain with my knees for 13 years. They are not even considering doing a knee replacement until I cannot walk anymore. I hardly sleep. Have been on pain killers all these years. Today they can do stem cells which is so much cheaper. Why aren't we offered at least this option! I do get depressed when I cannot cope with my pain. I sleep between 2 to 4 hours at times I do not sleep at all. I have been taping both knees for 13 years as well and it is so costly. We are pensioners and find the medical expenses much too high. I am sorry to hear about your pain. Ann xxxx
Valletta1@Ann please get a 2nd opinion of your knees. I was told similar about my hips until I found a different surgeon with a different mindset. You shouldn't leave replacements until you can't walk as it makes doing the rehab post op that much harder. That is an old fashioned, unnecessary opinion. You shouldn't have to suffer so. PS I was only 40 for my THRs.
I Have been to 6 different doctors, 4 physo, referred to Northshore hospital specialist and was declined. Seen a Rheumatologist and privatley seen a specialist after I had a private MRI done. I got meniscus damage and O.A, RA and suffer from Gout. The specialist explanation was that the operation is not always successful and with my knees I can do few more years taking pain killers. I have spent so much money on my knees that now I gave up. I even bought an electric tricycle as I have vertigo and do not want any more falls. The tricycle is suppose to strengthen the knees so they do not slip. But I am still experiencing same problems. I even lost 20 Kg's as I am so determined to get better. I am 60 years old and feel like an old lady as I do not have a quality of life. Thank you so much for your advice, I really appreciate. Kind regards Ann xxx
Interesting about having the jab in the thigh as I have had a massive sciatic flare after a jab in the bum! ...don't give up trying to get on the right dmard. I to have had bad reactions on everything over the last 3 years and on benepali now. Touch wood no bad reaction and early days ..touch wood it works. Steroids are magic sometimes but u have to be careful with them,jabs seem to have the least side effects I think? Know what u mean though,when your're bad they are a life saver.....
Well, I eventually had my steroid injection in my bum at the hospital.
In the time between the jab being due and it eventually being done, I was in so much pain I had a real problem with my back, my right leg giving way and had two falls, luckily when my husband was around. I decided that it was worthwhile making a formal complaint (written by my husband as my brain was so addled by the Diazepam I was given for muscle spasms & pain following my falls)!
Who's to know whether I would have fallen if I'd had my jab on time. I slept so much during this period, my balance went, I couldn't think straight and the worse of the worst - thinking I may be getting to the incontinence stage.
I now am returning to my post jab 'normality' apart from now waiting for another CT brain scan and I'm going to have an anaesthetic/steroid injection into my hip joint to check out what's going on there. My right hip gives way and the outside of my left leg is quite numb and permanently itchy.
Hi I have these by my Dr and consultant but I think it depends on the surgery your at. I can't function without them but am currently on a break from them and am slowly seizing up and the pain is exhausting 😥 good luck hun hope you get it sorted xx
Hi again everyone. I have not posted for a while but I had my brain scan which showed degenerative changes of the frontal-temporal lobes. The fact that my surgery sent out a letter asking me to phone and book a general routine telephone appointment with my GP which resulted in him just dropping this clanger in my lap ..... well I think ‘gobsmacked’ is the right word. I admit to half listening after this bombshell and, of course, agreeing to be referred to Older Adult Services. The wait was well over 6 months and I attended a couple of weeks ago. I’m pleased to say I was seen by a fantastic young man who was appalled by the way I’d been given the news. After speaking to me and my husband he said it was quite obvious that I had nothing more than than expected for my age and he was quite happy to discharge me or I could have all the usual memory tests they would give to someone with suspected dementia. I said I would like to do the tests anyway and was happy (if not slightly relieved) to get 100%, even guessing the date (duh)! He said he would be writing to my GP to say he was convinced my health had deteriorated due to not having my regular medication (the Depo-Medrone my surgery suddenly refused to give me and the ensuing wait where I’d had two falls)!
Luckily, I’ve just had another jab and this is the best I’ll be until the next one in May. I’ve also tried going back onto Gabapentin (which I took for a few years previously) but had an awful reaction this time and the same with Pregabalin. I know the hospitals are stretched and there’s certainly no cure but I feel another year will go by without much more happening. I know I’m luckier than most but I’ve put in a PIP claim! Haha, that was such fun. It only took me a week to fill it in. Funny to think that I got medically retired from DWP 🤬 but I don’t expect they’ll give me PIP!! 🤬 Watch this space.
Take care everyone. It’s a cruel world out there! ToD xx
Well good, I think. I find the phrase "as good as can be expected for your age" such a miserable sort of cold comfort statement..... hope you can now have your jabs to schedule, but watch those dimples in your bum!
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