Hi am seeing my rheumatologist next month in a desperate last ditch attempt to get answers from him. My ENA is always positive and I have tried steroids from my GP in the past for chest infections and have felt so well within days yet am not being given them at all by my rheumatologist long term for suspected lupus, scleroderma or Sjögrens instead I was Given 2 injections at the hospital one which worked really well and I felt much better the other a year later I suspect was a placebo as it had no effect whatsoever in fact I felt much worse. Perhaps a different brand was used. I was also given a trial run of hydroxochloroquine which I had over a dozen attempts to try and stick with it. After many attempts was very unwell and too ill to continue and I stopped all medications. I now am being left with no medication whatsoever. Whenever I go to my drs they just tell me see your rheumatologist it’s just so frustrating and if I feel I am getting nowhere I feel I will have to discharge myself from their care then will go back to my drs and ask find me someone else. Does anyone take steroids and are you taking them for lupus, scleroderma or Sjögrens. If so what strength and has it helped. Was told it’s not good long term but I can’t live long term like this with no diagnosis no medication and no hope of finding answers. If you have any advice I will be very grateful as I am just so unwell with no energy or fight left in me at all. I have paid private 4 times in the past and twice for my son who’s just been diagnosed with fibromyalgia just like me but every things moving so slow and I feel I am getting nowhere. I have hundreds of symptoms and over a dozen illnesses. I am now having to pay for a hysterectomy privately and will be borrowing £8000 as the NHS won’t do it. Have all my medical records and am just bouncing from one appointment to another with no answers and yet more questions. Just wish I could shake my rheumatologist into giving me a clue as to what’s going on. They are as much use as a chocolate fire guard. I have had most of these symptoms for over 40 years yet still I don’t have answers. You would think in this day and age they would have a clue. If only I was super rich as money would pay for every test going and then I would know what’s wrong with me.
Why can’t I be given steroids for suspected autoi... - LUPUS UK
Why can’t I be given steroids for suspected autoimmune disease such as lupus, Sjögrens or scleroderma when they work
Oh yes this is absolutely my cry too!!! Forgive me if I can’t read your post fully but I find it very hard to read anything now without spacers as I get lost and my concentration is too poor. So I may well not be the type of responder that you’re looking for here.
But here is my most recent steroid story in case it helps.
Before I moved to my current location 4 years ago I was on oral steroids for 6 months. I was relieved to wean off them due to weight gain and severe gastritis.
Then some of my immunology my bloods changed and this helped towards my rediagnosis from RA to Sjögren’s the following year. Now half my specialists think I have similar mix to yours.
In June this year I begged my rheum by email for a steroid injection so that the intense pain in my peripheries didn’t prevent me attending my youngest son’s graduation ceremony. To my surprise (given that she has only seen me twice in the 4 years we have lived here for) she agreed as directed my GP practice to give me one. I think it was the fact that I told her I was relying on naproxen despite confirmed gastritis, that swayed her. Also very high inflammatory markers.
Yesterday my professor of dermatology couldn’t believe that my rheum had agreed to give me this by email - she kept asking me whether I was sure I hadn’t seen her first?!
This injection not only resolved my pain in legs and stiffness in hands but unexpectedly my tremors, gastritis and twitching also disappeared and I slept like a dream for about 4 weeks.
Then Dr P, whom I saw 5 weeks ago privately, and who is a big wig in UK Sjögren’s and in rheumatology, explained that she wouldn’t recommend regular steroid injections as I’d hoped. Instead she recommended that I went back on Mycophenolate. She said the risk of osteoporosis and related fractures etc plus impact on adrenal function and weight, BP etc was the reason they won’t give regular courses of steroids or IM injections. I was disappointed and now, totally untreated for 18 months, my pain and tremors are through the roof again!
What I find so hard to understand is that my GPs, rheum and neurologist all are so ready to prescribe or recommend drugs that are now classed as controlled, only mask at best and put me at far higher risk all sorts of physical and mental side effects eg Pregabalin, Gabapentin and anti depressants and anti convulsants - yet despite being diagnosed Sjögren’s (plus overlap) won’t prescribe me oral or injectable Prednisolone despite the fact it works and gives me some significant quality of life back ? 🤷🏼♀️
Ii am waiting to go on Myclophenate,have been on steroids for a year.
They said that they don’t like you on steroids for too long because f it’s eff on my bones etc.
I can’t wait to get off the steroids,th docs say they are helping reduce my symptoms,but my symptoms of lupus and shortness of breath are just getting worse.
I don know if there’s any answers to auto immun stuff.
I hope you get something sorted out
Omg that’s shocking. I too don’t understand how rheumatologists are just so happy to give you something that either doesn’t work over what does work
I was told in low doses steroids can be helpful by friends who take it. I am not happy though about the weight gain side effects though as already struggling to lose 3 stone which is not budging at all. My ENA results are positive but I have asked my rheumatologist what that means or what illnesses I may have amd I just get well W are not sure at the moment which is awful as it’s almost 2’years at clinic with no definite diagnosis all the while I am getting worse. I strongly feel it’s definitely Sjögrens and scleroderma and possibly lupus too. What a carry on am at my wits end. Thank you for your advise as I can now ask my rheumatologist what the ENA means and what illnesses what I may have. It’s like the official secrets act they won’t tell me anything which is just so annoying. I am researching and trying everything but haven’t found anything that works but if I do I shall let you know. Have a great day and thanks for the support. I don’t go onto the site much lately as am just so unwell.
Yes I think that those who say how terrible it is to be stuck on steroids for a lifetime - as my pal with Addisons is - forget that being stuck in limbo land with only very powerful mind altering drugs being offered for solace (which one day will undoubtedly be found to do much harm too in all likelihood - especially as they can be very hard to to get off) is as bad. And it is very damaging psychologically too.
Apart from anything else it’s about quality of life. Steroids taken at a low level can replace the steroid our bodies naturally release I was told by my former GP - who wanted me on a maintenance dose. I did feel and look much better on steroids but only in injectable form because of the awful gastritis and severe palpitations I got as I tapered down. That said it was a whole lot easier to stop Prednisolone after 6 months than it was to get off Duloxetine after 5 months. And I was much better supported with the steroid taper. I asked for the very lowest dose to taper and got it no bother. Doctors grasp how hard it can be to get off steroids.
I’m dreading stopping pregabalin soon and have hoarded lower dose capsules for when the time comes. I’m just hanging in with it at a low dose now in order to feel stoned enough to help with skin biopsies to be taken from my lip within the next few weeks!
I was so grateful to my rheumatologist. She told me I had lupus,also Sjogrens.
She then said “ we try to be kind to our patients,as you are now,we are not going to do a lip biopsy, the treatment will be the sameanyway’
I said thank you very gratefully
Omg that’s shocking how your suffering it is just so awful. Drs don’t give a crap what suffering or agony we go through what about scientific leaps forward and medical advancements e keep hearing about from the medical profession. Please ignore my rant about the medical mafia. 😂. I really feel for your friend as addisons is a horrible disease to have not that any are nice. My son takes pregablin and I know the side effects and what the withdrawal does to you it must be horrendous that you have to go through this. I hope all goes well with the biopsy and that they find something that helps. Thanks so much for the advice. Take care. J. 😀
Hello my diagnosis took years and five rheumatologists by the time I was finally helped I was feeling awful and had pretty much given up hope anyone would help me.My diagnosis in the end was vasculitis.I was given steroid injections twice once just before I started hydroxychloroquine, which for me helped a bit but wasn't enough and later while they were beginning immunosuppressive drugs.It's a long frustrating process.I found in the end keeping a detailed diary of symptoms with photos of swollen fingers, red eyes, rashes etc helped me to remember and give a full list of symptoms with the pattern of them this helped eventually when I finally saw the right rheumatologist.This all helped around a year ago and now I am on the right treatment I am so much better.I really hope you get some help too.Jane
Thank you Jane for your reply and I am just so glad that you finally got a diagnosis and help but I can’t believe it took 5 rheumatologist to get you well. it just shows that even when you get to see one it’s not proven to help and to think you had to see so many. I may be like you seeing a few before I get the help I need. Well am on rheumatologist number one so maybe another 4 to go. 😂. Thank heavens my sense of humour is still intact. If I didn’t laugh, smile and joke I swear I will go insane. Now I now that it will help me to see other rheumatologists and I may just get answers. Thanks again for the advice. I will get rid of my rheumatologist and they can take me off his list. It’s very frustrating as I paid privately first to see him as I was told he was the best then went on his NHS list. It just shows you that you just need the right person to see you. Have a great day. 😀
If you ask for a second opinion I would try to research who you want to see it maybe worth travelling if it's possible for you to one of the nhs centres of excellence or maybe ring lupus UK for advice.
I was lucky in that my GP referred me three times in all over a number of years before the last time I had been "diagnosed with fibromyalgia" which I didn't agree with about 2 years prior by rheumatologist .
I then went away and suffered until I was desperate and my GP sent me again I was very lucky with her during this period I was also sent to rheumatologist by my liver consultant ( I have an autoimmune liver disease), about the sores on my fingers but on that occasion the rheumatologist didn't think it was significant.Even the last time it took 18 months but they didn't discharge me.
In the end it was luck really the rheumatologist I was seeing believed me that I was ill but couldn't work out what it was then one appointment she saw a sore on my finger and called a colleague and finally everything changed for me this person was able to help me.I do think this it's a question of seeing the right person.I hope you do and soon.Jane
Thanks for letting me know Jane. I can’t believe it’s only looked at when they can physically see something. Thank heavens you got a real diagnosis and treatment it’s all we need. What happens when they can’t see something. Am feeling much better now I know it just takes finding someone who is able to believe me and can offer help and support. I am not going to waste any more time on my rheumatologist and am now on the hunt for rheumatologist no 2. I believe there’s a lupus specialist at leeds that’s supposed to be good. Thanks for all the advice it’s made me realise I need to push ahead and see other specialists and to stop wasting time with those that will not or can’t help me. Thanks again 😀
Hi Jane thank you for your reply. I am very grateful for all replies and support and just feel I have hit rock bottom. Yes when you see a good rheumatologist you get answers. I am angry I have wasted 2 years with the one I have as it’s gotten me nowhere. I will just read through all my medical reports and hope the answers are in there. I glad your feeling better and the medication is helping. Take care. J. 😀
Doctors are very wary of prescribing the long term use of steroids and for very good reasons. Long term use can cause more problems than it solves like thinning skin and bones.
I have had to use steroid inhalers for many years and my skin is now very thin and the dr's are now keeping regular checks for the bones.
My son has also been taking pred tablets at a high level for many years and he too has to be monitored for the effects on a regular basis now.
What may be good as a short term treatment is not always good long term.
I wish I and my son didn't need to use steroids to be able to breathe but we do and have to keep our fingers crossed.
A lot of the consultants I see with the NHS actually work in the private sector as well.
Take care and hopefully you will find out what the problem is and get a diagnosis and treatment that works for you.
Thank you for taking time to reply. Am so sorry you and your son are so unwell it’s shocking. My son too is similar to me and unwell so it’s not good. Yes your right about the tablets and side effects I just hope that one day we all get the help we need. I saw my rheumatologist privately first then was added to his nhs list when I ran out of cash. Maybe it’s just gonna take seeing a whole list of consultants before I find a good one who can help me. If I find anything that helps I will let you know. I hope you and your son have a good week. Thanks again. 😀
Ps which disease does your ENA antibody point to?
Please do not insist on permanent steroids! They do so much damage. Yes, they do make you feel better, much better but they are only masking the symptoms.
My sister had lupus for the last twenty plus years. Went through the same diagnosis delays as most other people. Her rheumatologist, a renowned professor, put her on steroids when she was first diagnosed. She would also have booster injections up to four times a year. Long story short, two years ago she needed a routine operation to remove a feeding peg. After the op, they took her to surgery three separate times to stitch up her stomach, her bowel kept coming out of her stomach. Due to steroid use her organ and skin tissues had thinned so much they wouldn’t hold together. Two years later this opening had still not healed. I won’t go into all the gory details but she spent these last two years in Aintree hospital with maybe a total of three weeks at home. So many, many, serious problems.
My sister died in August 😢 😢 😢 from complications due to steroid use. Small bowel blockage, systemic sclerosis, etc.
Please think hard before asking for steroids. Fortunately, doctors have now realized the dangers as well as the help of steroids.
Much love xx
😢💞💐
Thank you for your reply and sharing with me the dangers of steroids. I was so upset to hear what happened to your sister and what the steroids did to her. I am In total shock as a professor gave the steroid treatment and am also sad you have lost your sister in such a way. Am just so sorry to hear what you have gone through. Having read all the posts I know realise how dangerous the steroids are. I was just so desperate to rid myself of the symptoms I blindly thought that it was my way out of illness and pain. Thank you for highlighting the dangers and what could happen to me should I take steroids. I now see I will have to seek other solutions and have now got the idea of steroids and medications out if my head. Thank you for all your advice as I now see I shall have to look elsewhere for pain relief. J
We must remember that only until quite recent have the medical profession realized the danger of long term steroid use. Unfortunately, the damage had already been done to my sister. My other sister has RA and other non diagnosed illnesses but her rheumatologist has been adamant over not giving her steroids unless absolutely necessary. She has had 2 injections and a weeks course over the last two years just to get her ‘over the hump’ but no long term use.
I do hope you find some relief , it’s very hard I know. Wishing you the best and many improvements in your health xx
Thank you and I hope your other sister is well soon. I will have to look at natural pain relief to try and combat the symptoms and hope I find something soon. J. 😀
TBH, I really don't know why anyone would want to be on steroids unless it's absolutely necessary. I have scleroderma, sjogrens, PBC and hypothyroidism And when I had a steroid injection I thought that I was losing it. It took 10 years to get my scleroderma diagnosis. I wasn't too worried at the time as I was young and just getting on with life. Helping yourself is one of the best remedies I find!
Thank you for your reply. I didn’t realise how dangerous the steroids could be I only saw the relief I felt after taking them and how well I felt. After reading my posts and listening to everyone I have now come to my senses and realised the risks involved. Thank you for highlighting the dangers. I can’t believe it took the medical profession so long to diagnose you I now see that maybe I should just be happy I am here and able to get through each day. Thanks again for your advice. J😀
There are quite a few people here who are on what is classed as a maintenance dose of oral steroids.
And then there are others like me who are awake in the early hours due to intense pain (inflammation related) - who end up taking meds like naproxen which can cause stomach ulcers plus a range of other medications that don’t actually help but cause dependence such as sleeping pills, anti spasmodics etc.
So, although I and most people here know perfectly well that steroids are harmful long term, it’s a balance of risks always between the damage done by lack of sleep/ insomnia and being in constant pain and the harm done by steroids or risks of immunesuppression. This is why dmards are used to try to address the systemic inflammation more sustainably but not everyone can tolerate these.
Getting a good night’s restorative sleep and being well enough to be able to exercise daily and work and live somewhat normally are important considerations too. For me an IM steroid injection give me this dramatic 4-6 week improvement in quality of life. I have tried 5 dmards and had allergic reactions to 4 of them and am not being offered alternatives now. So for me personally the benefit to quality of life from say, 3 steroid injections a year, would seem a no brainer.
I’m on AdCal D3 anyway and a PPI and can’t tolerate pain meds well at all -,therefore I don’t see how this level of pain, poor mobility and severe fatigue can be better for my long term health than a maintenance dose of steroids. Ultimately it is very much about each person’s unique circumstances and how good their doctors are at monitoring their disease activity and providing effective pain management too.
Thank you for taking time out to reply. I didn’t realise the damage steroids could do as no one has ever explained before. Now I have this information I will look elsewhere maybe something herbal or more natural am. I am Very grateful for the information as I find drs don’t explain stuff and I am left in the dark about how I get well and what treatment I can take. I don’t want to add more symptoms to my ever long list and am now not wanting to try them. Thanks again for the advice and I hope your keeping well and are ok yourself. J 😀
Thank you for your reply and letting me know what happens once your on the steroids. Hope there is something out there for you and am glad you have a good consultant. Enjoy your day. J. 😀
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