Hooray, I’ve finally had my depo medrone injection today! The Rheumatologist is 50/50 as to whether it will help as I don’t have an official diagnosis....this is almost like a test to see if it helps. But I’m trying to remain optimistic!
I just wondered how long it normally takes to notice relief? My main symptoms are fatigue, nerve pain, a heavy sensation in my legs and weakness. I occasionally get some swelling in my face and knuckles. If I don’t notice any improvement, I’m a bit lost as to what is causing my symptoms?
Also...this is a bit weird, but I’m curious- does the injection normally hurt? I had it the top of my bum cheek, which isn’t that fleshy (I’m only little!). I felt a tiny scratch and I thought it was over as then I didn’t feel anything else as the injection went in. I’ve had reduced feeling in my legs but thought the feeling had returned. When I couldn’t really ‘feel’ the injection it made me wonder if I’m still not feeling things ‘normally’. Or maybe the nurse was just incredibly good at giving injections!
Thanks everyone
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SRiley
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Hi SRiley I have a current diagnosis of UCTD and similar symptoms along with muscle pain. I was given a depo injection in February this year to see if it would improve my symptoms which it did.
As with you, the injection didn't hurt and it took about 7 days to fully work and the effect lasted about 6-8 weeks.
I hope you have a good result from it and it helps with your symptoms.
Thank you! I desperately want it to help...6-8 weeks of relief would be a good start! It sounds like we have very similar symptoms, I was just reading one of your previous posts. Thanks for replying
Yes we do sound similar! Glad to know it's not all in my head sometimes 🤪. Yes the 6-8 weeks were great, felt like the old me, regained confidence and started making future plans. Shame it wears off.
At my last appointment the discussion was to consider Azathioprine as the injection was successful, I have an appointment with a Rheumatology nurse on 22nd to discuss, although at the moment I'm wary of immunosuppression and side effects versus benefits.
I did mention the leg symptoms at my last appointment but they didn't seem concerned 🤔. I do feel like I need to be more assertive at appointments, I tend to get everything prepared before I go, list of medication, symptom diary, questions and then clam up at the last minute!
Do you have positive antibodies and ANA? You say you don't have an official diagnosis.
My ANA was borderline. Everything else has been normal except for low vitamin D and high B12. They thought autoimmune involved due to the fact that I suddenly developed Raynauds when I took ill...but they are still unsure!
I've had Raynaud's since my mid twenties. In 2015 I was diagnosed with GAVE and they found a positive AMA antibody linked with PBC (I am still under investigation for this). Since 2017 they found a positive ANA along with Ro-antibody and ANCA MPO positive. Scleroderma was originally suspected but now I am showing more lupus related symptoms. Last year I developed vitamin D deficiency and an enlarged spleen.
Hope it works! I find it takes a good few days/ week to start working, pain reduced first, fatigue takes a bit longer.
Not feeling the injection is probably her skill rather than your body - I’ve had so many needles in me over the years and some are totally painless, some less so!
Thank you! I think I am just in an anxious state of mind at the moment as I don’t have 100% feeling in my feet yet. She did seem to be a pretty good nurse! Hoping i’ll feel the benefit of the injection in a few days 😊🤞
Loss of feeling in feet after injection or is that one of your symptoms anyway? I lose feeling in my feet in a lupus flare and my reflexes there but it returns when I’m better. Also my son had an injection (it was antibiotic not steroid) in the same place as we have the steroid injections and the (rubbish!) doctor hit his nerve and he lost feeling in his leg for a few days but I’d guess it wouldn’t effect both feet as the nerve hit would only go down one leg? What did your rheumy say about numb feet? Think lots of have it and often they don’t really have answers for the nerve side of things! X
I had same with dental anaesthetic recently - it didn’t feel same as my neuropathic numbness though as the muscles lost control too so my whole face felt in palsy for a few days.
Yes I too had DM steroid jab in May and it sorted me out for at least a month - up to six weeks even. No tenderness at all on nurse adminIstering it either.
I had lots of dental work and other oral treatments so maybe didn’t feel the benefit everywhere as much but all neuro symptoms and ones you describe alleviated. Also I was so relieved to be relatively pain free that I couldn’t stop sleeping so none of the steroid induced mania I get with the tablets nor gastritis. If only I could get one every 3 months I’d be a happy Twitchy - although I realise there are good reasons why not of course! Sigh 🤷🏼♀️🙄
My legs and feet felt worse for 24 hours but my arms and hands improved on the day. The best thing was that all the FND/Functional overlay symptoms disappeared within 24 hours and only recently returned along with other stuff.
However I had to restart chemo cream on my lip 4 days after getting the jab and the burning lips were really painful and my parotid on one side swelled up so it was a little hard to feel the full benefit as I am sure I would have otherwise. Having tremors, twitches and gastritis all ease up was pretty great though!
I had the same with a dental injection once, massive nerve pain as she injected and a very saggy numb face on one side for almost a week 🙄
Ah a happy healthy (ish) twitchy so why can’t you have a steroid injection every few months if it improves your quality of life so much? Lots of people do? I’m just on my 9th methyl- pred IV of this year and worried about the strength and damage caused but rheumy says no choice - and it does have a miraculous effect (although also makes me a bit giggly and silly which is annoying for everyone else!! 🤣)
It’s same old story Mel - my healthcare system is not remotely up to scratch. I emailed my rheum, who’s only met me twice in 3 years - and requested an IM steroid jab so I could enjoy my son’s graduation ceremony and she agreed and wrote to my GP. Distance medicine lol! Maybe if I ever get to see her again and I don’t get despatched back to my inaccessible primary care I will be able to ask!
My sister in law works in healthcare as a manager down in south of England and she phoned last night to say she’d found a brilliant woman’s health clinic - top in UK for pelvic and gynae problems with physio etc etc. It’s right here in my hometown across the bridge. My GP referred me there for prolapse and other pelvic pain over 4 months ago and chased it up again but I’ve still not heard a word.
I am sure the health provision and brilliance are right here but they are spread so thin now that rheumatology are getting rid of Sjögren’s patients saying there’s nothing they can do for us as it’s untreatable. The only service I’ve been referred to that have written to me to let me know I’m on their waiting list, ironically, is clinical health psychology. And I think I’m going to need it for mPTSD and being forced to run my own healthcare by the time I finally get an appointment!
I hope the IV steroid keeps you giggly and relatively well for a good while to come.🤞🏽🤞🏽🤞🏽
Yes it’s one of my symptoms. When I first took ill, I lost all the feeling in my left leg and my reflexes were exaggerated. The neurologist initially said myelitis but she has been a bit vague since! My rheumatologist is lovely but he said I am a bit of a mystery 🤔 I have read of a lot of people having similar issues but no real answers!
That’s strange - I was the same with loss of feeling in left leg and arm! Neurologist thought hemiplegic (paralysing down one side) migraine but over the years the variety of specialists have come to the conclusion that it’s just what happens to me in a flare. I think neurologists are particularly bad at understanding autoimmunity - I like the sound of your rheumy! Admitting someone is a mystery and working to get to the bottom of it is what you need with these diseases as we’re all a bit weird with our symptoms 😬
I’ve been in hospital this last week and the young rheumy registrar was very concerned about my numb reflex- less feet (none of my other consultants concerned, they just say it’s weird and the least of my problems 🙄😂) but 4 day after IV steroids I’m much improved. Hopefully yours will improve with steroids because although it’s not life threatening or seemingly rheumy/ neuro concerning, it is concerning for us because you think it might just keep increasing in numbness??
Sorry to hear you’ve been so unwell! But I’m glad the IV steroids are helping!
The reflex thing is weird. In the hospital, the doctors were very concerned about my over brisk, asymmetrical reflexes (they initially thought I had MS) but the neurologist was not that concerned! Maybe everyone has different levels of what they find concerning?!
My main issue with the lack of feeling is that it affects my balance at times and I’m not that steady on my feet. Frustrating!
Thanks everyone for your advice! Just thought I’d give you a little update
So I’m 6 days in now...3 days after the injection, feeling started to return to my feet!!! It was weird, I thought I’d stood on something but it was just that the ground felt so different! Since then, feeling has gradually been returning to my legs too (I thought it had already returned but obviously not! They feel quite different now!). My legs feel lighter (I hope this continues!). Yesterday and today, I’ve had a bit of a manic energy, but I keep pushing it and then over-tiring myself. I still have headaches and dizziness but I’m not sure if the steroid injection would help with those issues really.
I’m curious...my blood tests suggest that I do not have inflammation. The Rheumatologist said that if the injection made a difference then I must have some type of inflammation...I was wondering if it’s my nerve endings that are inflamed? Something that wouldn’t show up in a blood test. I guess the fact that I feel different might help him with diagnosis?
SRiley — such good news! The manic feeling could just be the steroids. Try not to over-tire yourself.
What a great question about the inflammation. I have wondered the same thing. I have felt fine with a low hematocrit and awful with normal bloods, including ESR. I always feel better after 24 hours on prednisone, and I am sure my blood tests would be perfectly normal. People with MS do not have elevated ESR, I don’t think, and yet they have inflammation. It is confusing to me. Ask your doctors. I will ask mine too.
My bloods say no inflammation but I’m convinced more than ever it is inflammation!!!! So frustrating
My dad has RA and never had any blood results to support his diagnosis. He has been treated by a rheumatologist who treated the symptoms and not the cause.
I took a naproxen today because I literally could not stand up and within an hour the pain/stiffness had subsided.
Thanks everyone for your replies...I just wondered if anyone has experienced the steroid injection wearing off very quickly or if something else is happening to me... it’s been almost 3 weeks and I’ve been been feeling quite good...but I went out for tea last night and started to feel exhausted when walking back to the car. One of my legs felt a bit funny. I still have feeling in my feet, my hips are still moving well, my lips aren’t as swollen and cracked and the little spots on my neck have disappeared... but today I seem to have the old exhaustion and heaviness Could the injection be wearing off already?
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Could the injection be wearing off already? 
Ongoing symptoms, Weak positive ANA, waiting results for ds dna and rhf, what does it mean and how long till test results? 
Scared and lonely
Pacing
anyone else UCTD?
