LUPUS UK
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oral steroids study findings: start low, stay low

i wonder what you think about the conclusions of this study?!

medpagetoday.com/Rheumatolo...

๐Ÿ€๐ŸŒป๐Ÿ€๐ŸŒป coco

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Very interesting Coco thanks for sharing, I've just had a 5 day course of 20mg prednisone, great for pain but made me sleepy on top of being fatigued, I was hoping it would do the opposite ๐Ÿ˜ฉ๐Ÿ˜ด

My GP talked about very low dose longer term but won't give me anymore without guidance from the rheumatologist.

Diane๐ŸŒบXx

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๐Ÿ™sleepy on top of the fatigue...eeee: not a great result even if the pain has damped down...did you taper down off the 20mg ultra slowly? Eg, my clinic has me taking 4 weeks of alternating doses at each 5mg decrease...ie right now I'm tapering down from a week on 10mg prednisolone, following that sort of tapering system... and am now starting 4 weeks of alternate days on 4 & 4.5mg. I taper down until symptoms begin to resurface and then remain at whatever low dose of pred i need

Anyway, something to discuss with rheumatology

Hope that makes sense ๐Ÿ˜‰๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

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Yes it makea sense Coco, No I didn't taper probably because it was only five days, I've been struggling with hydroxy and had stopped it for a few weeks then tried the steroids, I've gone back on hydroxy but just half a tablet every other day and very slowly try and increase it, I'm super sensitive to so many drugs its ridiculous, my gp said she had people on 2mg pred long term but they still get some long term side effects, yes its food for thought that this is an option to discuss with rheum whenever that maybe October November who knows! Sometimes I think I could cope with the pain if only I could have a clear head and no fatigue.

Ah well one day at a time I guess at the moment!

Hope you can have a decent weekend

Diane xxx

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Yes, am remembering our previous chats better now. Your reactivity is considerable. And yes, I know, such a short sharp "shock" of relatively high dose pred IS one treatment technique for certain types of symptomatology.

If I'm greatly looking forward to what rheumatology says about your issues, boy must you be HUGELY looking forward to it (but I bet you've got mixed feelings...those consultations always leave us with so much "processing" to do...one great lupus friend here calls this processing "rewinding" which I think is even better ๐Ÿ˜‰)

๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜

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That's an excellent term for it Coco, 'rewinding' I like that. I do have mixed feelings because I feel so let down with the rheumatologist I've been seeing, I just want a rheumatologist to listen and to understand what I'm saying and to interpret my positive blood tests along with all my symptoms and give me a definate diagnosis, to have a rheumatologist who knows all about ctd and its complexities, I think I will feel mentally relieved if you know what I mean, Limboland is not a nice place to be, So fingers crossed.

Will keep you posted,

๐ŸŒบ๐ŸŒธxxx

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๐Ÿ‘๐ŸŒป๐Ÿ˜˜๐Ÿ€

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I can well relate to what you are saying about yourself ExtremeDuvetDaze. It is horrible being undiagnosed or feeling misdiagnosed. Re extreme sensitivities - me too.

I have very mixed feelings about oral steroids BC. The rheum professor who was a guest speaker at our NRAS ambassador meeting last year explained that he very rarely uses them for any of his patients because of the tendency towards weight gain, Cushings and bone density problems they induce. He prefers to use steroid injections for this reason. My friend is on oral steroids forever because she has Addison's and would die if she stops taking them. She has no choice but pays a very high price indeed re osteoporosis.

Another friend with Bronchiastasis swears by short sharp bursts of them at high dose. I can see all sides - but personally would only take them short term from now onwards, after six months on Prednisolone last year. They led to the delay in my primary Sjogrens diagnosis as my immunology was skewed/ masked. I'm very responsive to medications in good and bad ways as you know and steroids affect my blood test results by masking problems. But then the weight gain is a big issue for me and high doses induce psychosis in me so oral steroids are a no no!

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You make v important points there, twitchy! This game is all about knowing your own special issues and avoiding generalisations, like The Man said, below, ....even the generalisation I've just made ๐Ÿ˜‰๐Ÿ˜˜๐Ÿ€

"All generalizations are false, including this one."

Mark Twain

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Yes - a hard topic to discuss rationally BC. I recall an almighty row once breaking out on an arthritis forum about oral steroids - and I do hate rows! Xx

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๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘

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Havingheard MT, can I ask your and others' advice?

I saw Diabetes nurse on Mon who put me on Metformin, cheers,and was admonished for taking myself off Pregablin (this is very silly column writing) and advised to see nice new GP. Saw her friday, she happilyprescribed a new light wheelchair by the way as per OT advice, and then I begged for a short course of Pred cos I felt so ill.

Ok. Night one, wired, and

I mean full amp. No sleep. Night two less so, but ditto, olympics good at 2/3/4 am. Tonight less wired but early attempt to sleep useless. Two more days on 30 then taper by one two days each.

?

Should I taper tomorrow to sleep, or stick it out? I have had the desired less pain and less deathly tiredness on top of fatigue but cost too much? When originally given pred similar 15 yrs ago slept like a top!

Your take, and others' guru, much anticipated as always

X

โšฝ๏ธ

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Should be TT reply Above! See below guru. Should I have asked for injections?

Cheers

โšฝ๏ธ

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As I say Footy it's a highly subjective area. Anything over 15 mg and I'm wired, over 20mg and I'm flapping about in the sky scaring those I love. So most of the time I chose to live with pain rather than risk drug side effects. But that's me - maybe I don't have much pain to begin with or maybe I've had a lifetime in pain and it doesn't faze me unless it's truly horrendous - and even then I blot it out afterwards thinking I must have imagined it!

I was on Pred for six months last year and the pain would flare up with each taper. The reason my GP agreed to give me the stuff was so we could see if the neuropathy went away - in which case we could feel confident it was immune mediated. We both knew that it was an inflammatory neuropathy so the experiment was a bit of an own goal (sorryโšฝ๏ธ) because I just put on lots of weight, found it hard to get down to lower doses, got a post op wound infection as immunity was lowered by it, masked my autoantibody results and generally stalled rather than addressed things.

My friend with Addison's lives in terrible pain 24/7 despite and because of the steroids she has to take in order to stay alive. I look at her and know I'm fortunate to be able to choose. But this is me. I don't have to use a wheelchair and I'm not in much pain most of the time. I am dizzy, numb, half blind just now with Sicca flare, have horrid gynae issues and IBS. And am so very tired all the time. But not a lot of pain very fortunately - for this I'm blessed. Of course you want a break from pain so just enjoy it if it's working -.like a holiday you deserve. The insomnia is the adrenalin rush - see it as a night out on the disco floor?! Xx

Ps and my actual initials are MT!

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Thanksguru. Much appreciated

Own goal! Nice one

โšฝ๏ธ

Ref to MT mark twain ! Coincidence

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Ps injection next time perhaps? X

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Ps afterthought. Was the xtremereaction possible indication my adrenaline was v low? Cause for concern guru?

X

โšฝ๏ธ

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Well I'm not sure but it hasn't killed you yet Footy so suggest you just get down to a dose you feel comfortable at. Once there enjoy it as much as possible.X

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Reply to Extreme Duvet daze from above. What is going on tonight?

Hi. Have you asked the admin staff for your local lupus expert for a second opinion? I did and got all you are looking for, despite adding two more conditions, Ss and Fibro. Give it a go, especially if you have never seen one, only local rheumy like me.

Good luck

โšฝ๏ธ

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Hi Footygirl, yes Paul gave me a name of a rheum who specialises in Lupus in Haywards Heath so I'm waiting for an appointment but it won't be until October at the earliest, I'm praying she will listen to me and help me , it would've been nice if the rheum that I saw in March had actually been honest and said ' I can't help you but I know someone who can' instead I've been through a whole roller coaster thinking I'm getting somewhere and then not, I had to ask my GP to refer me for a second opinion, I may not have done this without everyone's encouragement and support on here.

I'm glad you got some answers too, I know we still have to cope with everything but being given a firm diagnosis helps alot mentally! . I have fibro too and I think I may have Sjorgrens , I have positive anti Ro and the symptoms, ah it's so much fun isn't it....not๐Ÿ˜ซ.

Hope you managed to get some sleep if not then I hope you enjoyed the Olympics ๐Ÿ˜œ

Diane๐ŸŒธXx

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hi dian it is most important that they should have given you calcium tablet to take with the predistone cos it strips bone formation and you dont dont want to be on these for a long time also tapering is essential on 20 mg loogn at this site also

mentalhealthdaily.com/2014/...

follow this link past in your browser i have come off these i know what they can do any bone pains consult doctor if you are on them a long time.

regards john

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Thanks John for the interesting article, I shall keep all this in mind for the future if I should take pred again but it's not something I would want to be taking long term if it can be avoided, I don't seem to do well on drugs and I don't seem to do well without them either, it's a bit of a dilemma for me ๐Ÿ˜ฉ

All the best

Diane๐ŸŒบx

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Hi Barnclown

Thank you for posting such an interesting if sobering article about steroids!. At one time Rheumatolgy was advocating high doses of treatment for newly diagnosed patients with lupus or RA to stop the disease progressing too much. Now it looks like they're changing their minds because of the side effects. If only we all didn't have this dilemma with steroids because they are so effective yet have such serious side effects. Also they are difficult to come off or wean down on!. As always you give us food for thought!. Hope your having a good weekend. X

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Had been hoping you'd reply, misty! Thanks so much: as always, your vvv carefully considered comments reflect your long-time experience of treatment with oral steroids and your deeply thoughful approach to reliance on pharmaceuticals ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ˜˜๐Ÿ€

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Hello Barnclown

Have had another thought that I get the feeling that doctors can't decide whether 7.5 mg steroids is a safe dose long term or 5 mg . As someone who struggles to get to 5mg I hope they find 7mg is the safe one!. Studies like in the Medpage article are badly needed to answer this. It's good there going to make it bigger and study the patients for longer. It may well be there's no such thing as a safe dose but it's good they want to look into this aspect!. I'd love to know what you think based on your experience of seeing top doctors. Take CareX

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I do vvvv much agree...my experience is limited, but my husband of 30+ years has early onset crohns & daily pred has been his main treatment for decades....+ I've made a point of paying close attention to any info available about treatment with steroids in any form..prescription topical steroids & IV steroids had been helping me for decades before I finally began to rely on oral pred when my infant onset lupus diagnosis was recovered 5 years ago

For what it's worth, my impression is that steroids have been THE resort for virtually all autoimmune conditions for long enough that the adverse side effects are only too well + widely recognised & acknowledged. This prescribing has been going on for virtually all my life...it's only relatively more recently that alternative treatments have begun to be been prescribed enough for their adverse effects to begin to be understood. My impression is that currently cocktails of relatively low dose combined therapy antiinflammatory & immunosuppressants are preferred by specialists..including daily maximum doses of 7.5mg pred (and the emphasis is on constantly tapering that down v closely steadily)

My abiding impression is that although the risks of long term steroids are fairly well appreciated, the long term risks of alternative pharmaceuticals are only just beginning to be as well appreciated...

Am going to sleep on this subject tonight ๐Ÿ˜‰๐Ÿ’ค๐Ÿ’ค๐Ÿ’ค๐Ÿ’ค๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜

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Hi Barnclown

I do agree with you, much more is known about long term steroids because as a drug they've been around a long time compared to other newer immunosuppressives. Can I ask does your husband take steroids now and what dose is he on?. I think of the long term effects all the time but also know there are good treatments now to combat some of the side effects which is very reassuring!. Dear Coco you've certainly made me think and stimulated debate with your article. Thanks so muchX

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You're totally welcome dear misty ๐Ÿ˜˜

My husband was on daily steroids for severe Crohn's disease from his university years through to about 10 years ago - so, over 30 years. He endured long drawn out flares, abscesses, several major surgeries (bowel resections) and constant pain + dysfunction.

He was on every pred dose necessary, from ultra high to as low as he could get.

A few years ago, he & his consultant decided he'd seemed more well for long enough to try coming off pred.

The process took several years & a lot of painful effort, + involved endocrinology who claimed all that pred had given him Addison's Disease ...but he ignored that and HURRAH did get his adrenals working again eventually simply by being patient & persevering.

Those years on pred had given him early onset osteoporosis, so he had to spend several years on daily bisphosphonates, but his latest dexa showed he had got his bone density back properly.

Yes, his decades of active crohns + the meds & surgeries mean he lives with a degree of constant pain & discomfort + GI dysfunction...so he continues to need significant daily meds BUT he is still off pred ๐Ÿ˜Š

...my feeling is that he is a great example of the good daily pred can do...without pred he wouldn't be here today, wouldn't have been able to plant his native wood etc etc ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐Ÿ˜๐Ÿ˜๐Ÿ˜๐Ÿ˜

I wish the same success to all who' re coming off long term daily pred ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

Apologies for going on at length...but this man is my HERO...

๐ŸŒป๐Ÿ€๐Ÿ˜˜๐ŸŒป๐Ÿ€๐Ÿ˜˜ coco

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Hi Barnclown

Wow!. What an inspiring story. No wonder your husband is your HERO deservedly so for all he has been thru and achieved. Behind every great man there is a great woman, so true for you because you've been such a support!. His story gives me heart that I could be reversing my steroid induced osteoporosis with these infusions!. HUGE achievement to come off pred too. Shows it can be done with the right instructions!. Thank you for sharing his story, it's given me great heart. X

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๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜๐Ÿ€

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Fab read!

I've been on 5 mg for 14 years and can go to 7.5 and back without untoward symptoms ..so thanks Coco...always great to read that the body is doing something right.

PM

โš“๏ธ

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Thanks loads for your reply PM ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ: gosh, your experience is fascinating: you could be a poster-girl for this study...your medics & you are doing exactly the best thing...๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘..and I guess my medics & I are too except I've only been knowingly following this pred prescription system for 5 years - although it's probable/highly likely my mother & our family medics had me on oral steroids at least some of the time after my infant onset lupus diagnosis...but they kept the diagnosis secret from everyone...so when I left home & moved to the uk @ 21, the NHS took me on unaware of my lupus....๐Ÿ˜‰ you know the story

๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜ coco

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Je le sais ma chรจre amie.

It must be a HUGE frustration for you at times , having gaps in your medical history: I've no excuse but also have many. Once we have our thinking caps on we can information gather and forge on, however childhood conditions still remain a mystery .

Hugs

PM

โš“๏ธ

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Well Said dear PM๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜. I feel vvvv lucky, because the inevitable frustrations are more than compensated for by the positive way am responding to my SLE & SS treatment plans...which lends credibility to my diagnostic back story + to my current medics, diagnoses. It's just such a relief to feel we understand my stuff...after those decades of bewilderment. I wish the same for everyone here in the diagnostic wilderness...AND I continue unable to take any good fortune that seems to have come my way for granted...am always on the edge of my seat, waiting for the next surprise ๐Ÿ˜‰ ๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

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Good to read this research and thanks for putting it off. I have recently come off prednisone (and remain on Hydroxy) and it sorted me out but I was asleep most of every day. I will definitely ask my Dr should I need it again to go low and slow with the doses...worth trying this to avoid more body damage. Thanks again

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You're vvv welcome nixta! Glad it's useful to you. Am fascinated that you & EDD both came off pred feeling even more tired than ever...am going to see what I can find out about this reaction...do you have any theories about it? Eg some kind of 'burn out' reaction to pred actively helping you?

๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

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It took about 2-3 days OFF it to be back to normal. So it was while I was taking it...after about three days I just could not stay awake. I've had it in the past and it had the opposite effect - stayed awake and was wired. So suspect the formula may have changed. Am much better now and doing the paleo and anti inflammatory diet. Energy levels are much improved with no gluten and low to no sugar (I am sugar addict so has been a hard road!!) I have poo-pooed the gluten thing but after read The Grain Brain by David Permutter - incredible and very science based. So still hoping to force myself into remission. Heard fo some managing 8 years off the meds!! fingers crossed.

Take care and thanks again

Nixta

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Diet matters A LOT to me too been following similar regime for 10+ years๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

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Totally fascinating topic again BC and so relevant for us all here.

Your husbands story is a real victory and gives us all hope.

For me I had mild Addisons to start with so put on low dose Hydrocortisone for a few years. For this reason I have to be extremely careful when tapering present doses.

I am currently on 80mg Depot injection every 10 weeks plus 15 mg hydrocortisone. If I dip too low I have to resort to 2.5 mg Pred on top which is really five weeks into the injection course I have to take it dailly.

My Rheumy thinks the same as Twitchys RA expert,,so favours injections. I don't think however they quite realise how different people's responses are to injections. You don't get the steady predictable dose that the oral one gives you and with some folk they last for only a very short time.

It can be very useful if you were going away on holiday and needed to be more mobile and less fatigued for a few weeks . Sadly for most folk I know the first injection is the best and many are a hit or miss some hardly working at all. But the most I get is about 5 to 6 weeks but still need my oral hydrocortisone to keep the adrenals steady.

If you also have Addisons that can be quite dangerous. On two occasions I had almost a major crisis as I went along with the Rheumies idea of no extra oral steroids with the injection.

I know the side effects are awful for some people but before the steroids I was on permanent Ciprofloxacin for seven months for kidney infections and masses of morphine every day. Now very little morphine and few just occasional antibiotics. I also had constant phlebitis and lymph gland swelling , heart problems and Was virtually house bound.

I hate all the drugs but we just have to weigh it all up.

I love your idea of your potent ginger infusion in the fridge all the time. I do that too now and am sure it helps.It is great if we can find something for ourselves with no side effects. So many of the herbals have side effects for sensitive people too.

Keep finding those wonderful topics BC!!!

Cutty xx

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GRRRREAT reply dear cutty: I think you're a wonderful example of an Expert Patient who is TRULY in the Driver's Seat despite diagnostic ambiguities: self aware, well informed, flexible and conscientious & determined ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐ŸŒŸ๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘. Am sure your replies are vvvv helpful to anyone reading this discussion ๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜

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Great reply Cutty - as usual bowled over by how much you have to endure without official diagnostic recognition. You are so brave. X

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Thanks BC and Twitchy.

To be honest I don't feel very brave at all when I read about all you folk here with so much to carry too,

I do have my moments and do resort to the tears every so often ,especially when I come up against medical ignorance. Those are tears of utter frustration but a piece of good news is that my last blow out and subsequent tears after a hopeless visit to my hopeless GP finally gave me the oomph to change practice .

I am now with a wonderful GP, an excellent practice and have so much more support. I am kicking myself that I didn't switch surgeries two years ago when my old fantastic GP of over twenty years retired.

Always trust your own instincts , they are pretty much always right!!! Xx

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๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ‘๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜๐Ÿ˜˜

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Yes yes yes Cutty that's so true about trusting your instincts - it takes so long to learn to have the confidence to tough it out with the medical profession - but persistence and having faith in yourself is often the only way. Fab news about the new GP - so well done I'm delighted for you!! X

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Thanks Twitchy, everyone's experiences on here gave me the push to do it!!

Xxx

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๐Ÿ‘๐Ÿป๐Ÿพ๐Ÿธ๐Ÿ˜˜

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Fantastic piece coco. Just saw this post. I am on 7.5mg steroid for the past 22 years. I have lupus for 22 years. I was told by my rheumatology consultant that I will never come off them as my body now depends on it. I find that hard to take as I don't want to be on them for the rest of my life. My consultant tapered me down to 5mg but it didn't work. Loosing that 2.5 mg my body was shutting down. I felt sooooo sick. Had to go back up on 2.5mg. Do you or anyone lose know what is the correct way of reducing your steroid. I was told you can go down by point 5 at a time but my consultant didn't know that and went in there a did a cold turkey with me of taking out 2.5 mg completely. It's very scary to hear you will never come off steroid. I don't believe it is true. Maybe it is... Surely their is a correct procedure of doing so... It would be a dream to reduce and finally come off steroid.

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Am so glad this discussion is helping carbar ๐Ÿค—

โ˜น๏ธYou're right carbar: and your consultant should know you're right + discuss alternative approaches to tapering...my impression is that all up to date lupus consultants know there are alternatives....the thinking is that many of us are so reactive that ultra slow tapering is a necessity

Currently, my tapers are based on 4 weeks of alternate days on doses differing by .5mg. Eg at the mo I'm coming down from 10mg, and am now on 4 weeks of alternating days on 4mg & 4.5mg. So, my next 4 weeks will be on alternating days of 4mg & 3.5mg. This continues until I can go no lower. Hope this makes sense ๐Ÿ˜‰

๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€ coco

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Thanks barnclown. It does make since. Thank you. I tried to alternate my days from 5mg then back to 7.5 but it didn't work. flare came back and knees swollen. I am finding it really hard to taper down. Consultants increased my methotrexate in order for me to come off steroids but every time I try I'm worse. Methotrexate is hard. Extremely tired 24/7. Feel like my hormones are all over the place. Really hope it works. I was told though I will never come off steriods. Body depends on them now apparently. It's shocking how no doctor will tell you the long term affects of steroids when they prescribe them. I have an array of problems not due to my lupus but to the steroids. Thank you though for raising this topic. Hope you are well xx

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Hang in there carbar...coming off steroids is a vvv big challenge for most all of us....it's really good you're determined to understand the dynamics underlying your own 'special' ๐Ÿ˜‰ version of all this...the more you understand, the better able you'll be to discuss plans for improving your situation as much as poss. I'm so glad you're here ๐Ÿ€๐ŸŒป๐Ÿ€๐ŸŒป

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Ah thank you barnclown. I'm delighted you are here also. You bring so much to this forum. I constantly learn from you and others. Everyone's experience here is so different. It's amazing how lupus interacts with our bodies. I hope you have a good day today ๐Ÿ˜€โ˜˜. Lots of โค๏ธ

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๐Ÿ€๐Ÿ˜˜๐Ÿ€๐Ÿ˜˜

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