As some may know from previous post I have fallen twice, bruising quite badly and haematoma in right lower leg that tracked down my leg. Phoned surgery. GP rang and said it sounded like normal bruising but I wasn’t used to it. I explained that this was severe bruising and that it was dispersing but I had egg shaped lump on right shin and left ankle looked like there was pus in it without skin being broken. I had been to see pharmacist who advised to phone her as he was worried it would ulcerate. No- she was having none of it but said I could send photos if I wanted. Sent photos 3.5 hours later still no reply so phoned again and she had gone so another doc rang me back and said he was worried it would ulcerate so gave strong antibiotics. The fall was 28.11.21 and the call was on 3/12. On 6/12 saw rheumatologist who realised I was still on 10mg of Prednisolone as he had just been signing my prescriptions which I ordered by phone, and not seeing me when he said he would for various reasons. He said I had to start weaning off immediately. First two weeks down to 7.5. By the end of that the pains got worse in my joints. My feet were already swollen from the fall but they became very painful. Next 2 weeks 5mg. After 12 days of that I was in more pain and had a rash all over my legs that looked very much like HS purpura which I have had twice before. Then I dropped to 2.5mg. By the third day I had a granular rash all around my nose spreading over my cheeks, I was in pain everywhere and legs swollen from ankle to knee with sunburn feeling. Phoned GP and got immediate appointment on 10/1/22. He said there was some sort of vascular rash, gave me antibiotic cream for the still inflamed left ankle, examined the now smaller egg and said he’d write to rheumatologist. I had already phoned and left message with rheumatology nurse on answer machine. He thought 8 weeks was too short a time for weaning. Nurse phoned me that afternoon. Rheumatologist said to go back to 10mg straight away until he can see me. She confirmed my next appointment was due early February but that “may have to be adjusted according to the pressures on the service”. Has anyone else experienced this weaning so quickly? I have been on the full dose since Tuesday. Now rashes have gone, ankle swelling has come down, “egg” is much reduced, far less pain. Amazing.
Weaning off Prednisolone- nightmare!: As some may... - LUPUS UK
Weaning off Prednisolone- nightmare!
That is a fairly typical "got to get you off pred quickly!" bull in a china shop approach!!! They should have to try it.
How long have you been on 10mg? You not only have the reason you were on it to accommodate but also getting adrenal function back to normal once you go below about 8-10mg.
Well over a year. I started off on an 8 week supply starting 40, then 30, then 20 then 10. They said they would see me before they finished. But 2 weeks after they finished I was really ill and no appointment so I phoned his secretary. Nobody told me you were just meant to stop, or to order more tablets. He, at that stage, said he thought it was maybe Sjogrens . So I thought it was just a one off treatment. I felt really ill. I went to see him within a few days and was back on 40 but reducing quickly to 10. I’ve been on that until this episode. I was diagnosed with Lupus around March 2021. I’m terrible remembering things. Do you understand why I’m on 400 hydroxy when most here seem to be on 200? Makes me question my meds now.
No idea about hydroxy I'm afraid - but if you come over to PMRGCAuk we can help you with the tapering off pred from 10mg. Down to there is relatively easy but after the time/dose you have been on for a year you have to taper not reduce (yes, there is a difference) for this final stage. The expert tapering endos recommended approach is 1mg at a time from 10mg. Adrenal function doesn't return overnight and a crash reduction will put you at risk of an adrenal crisis - which if not recognised can make you very ill, ICU ill if not caught quickly. In that context you should be OK down to 5mg - but big changes in dose will be uncomfortable with steroid withdrawal reactions. Small steps will make it a bit more comfortable AND identify if you still need pred to control whateve rit was for before.DON'T let the rheumy make you suffer for his error - what is done is done and you have to start from where you are now, not where you should have been months ago,
Hi Bowen. You weened much too quickly and should also have been bridged to a steroid sparing medication before weening. Typically steroids aren’t used long term because of side effects. Anything over 7.5 is over physiologic dose so at 10, you’ve suppressed your adrenals. They take a while to wake back up. Best to go down in small increments very slowly like 1 mg every 2 weeks to a month depending on how you tolerate it. I was on high dose steroids for about 6 or so months and when I got to 10-15 mg, all my symptoms came back.
Glad rheum said go back up until an appt. That is necessary. They should bridge you which means as you come down off of steroids, you should start taking a med that helps control your CTD. They use any number of meds/immunosuppressants eg Hydroxychloroquine, methotrexate, CellCept, azathioprine at the same time you ween. Has this ever been discussed? Telling by discussion above, looks like you’re on Hydroxychloroquine. It is weight based a 5 mg/kg. Anything below 200 has been shown to increase risk for flares and disease activity. 400 in standard. I’m on 300 and weigh 70 kg. Rheum may need to add a medication in order to taper you down safely so your symptoms don’t return. It’s trial and error most of the time with these things as we all react differently to meds.
Sending hugs. ❤️xx
Aha, that explains the dose I am on. I am overweight. My weight went up after a while of taking meds then lockdown, then I became very immobile compared to before and my weight has gone up again. I am on slimming world but it’s hard work. Slow weight loss. I do feel better on this regime though. Trouble is I get diarrhoea if I eat the fruit and veg I want to (too much info I’m sure, sorry.) I’m grateful for your advice. Trouble is consultants from all disciplines don’t like people saying what they think they should have. Let’s see what he says when I meet him - whenever that will be!!!
It is perfectly possible to wean off pred without adding in another drug - they rarely help much anyway. Especially after only a year or so. We wean off pred after 4 or 5 years and no added extras. But you can only wean off pred if the disease is burnt out or - as you so rightly say - under control with a more suitable drug.
Cutting carbs is the best way of dealing with pred-related weight gain. It does work. SW tends to be relatively high in carbs judging by the friends I know who used SW. But while you are still on pred, weight loss is often slow unless you are lucky. We have someone on our forum who lost over 2st while still on well above 10mg pred using the pre-diabetes programme from the NHS.
Oh thank you I’ll look into that. Bread has always been my downfall will lashings of butter! For ages now I just have the two small pieces allowed on the plan. I use potatoes and pasta more on slimming world than I would naturally just to fill me up. Mmm needs a bit of serious thought. ❤️
PMR, we are talking about weaning with lupus, not PMR so it’s very different. If ppl wean and start getting symptomatic then a bridge must be considered. In our case, it’s very dangerous as organs become involved when tapered too quickly or not covered by another drug. Sometimes Hydroxychloroquine does the trick but people don’t wait long enough before tapering. Also, it’d be hard to find a rheumie okay with a loopie being on prednisone for 4 to 5 years without trying to transition to DMARD multiple times. PMR and systemic lupus are not the same thing at all. Management is very different especially when it comes to steroids as people with lupus have heavy organ involvement that can be exacerbated by any dose of steroids. Tapering off steroids for PMR and lupus are 2 totally different beasts, especially with recrudescence of symptoms. Plus, PMR typically only responds to steroids whereas we have more options with regard to immunosuppressants. I get what your saying but the management for PMR and SLE are not reciprocal for many reasons.
I didn't suggest that they were the same. If you had read what I wrote properly you would see I said that - but the process of weaning off pred is the same whatever reason you are doing it. If the rheumy has made a mistake and left a patient on pred longer than they should have, the actual final weaning process after a year is the same. Down to 10mg is easy, from 10mg after long term pred there are two limiting factors. One is the underlying disease process. As I already said, either the disease process must be in remission OR it must be controlled by another medication. In that case it is NOT a steroid sparer. And at the same time you cannot just bash on regardless without being aware of the adrenal function situation. The time that Bowenlady has been on pred that is a criterion - it would not have been had she just stopped the pred after the rapid taper a year ago, But she was on a high enough dose both then and since for adrenal response to be blunted and it is probably the primary criterion now. Adrenal function can take up to a year to return to normal even after you are entirely off long term pred - she probably needs a few months now at the very least, not a few weeks. The rest of this taper must be slow, in small steps. And if the rheumy wants her off pred entirely - then he has to identify the right dose of whatever to manage the lupus. Preferably first.
Please, I did not mean to offend. However, whenever you make suggestions about steroids, it commonly reads like one size fits all for all diseases. That’s just how I interpret what you say many times. While I recognize that you are extremely knowledgeable about steroids, there are just some nuances that are lupus specific that you might not recognize. I was just making you aware of these intricacies since I know you don’t have lupus. It’s very difficult to decipher between withdrawal symptoms with adrenal insufficiency from a flare at times so it becomes a trial and error scenario. Dysautonomia/POTS can look eerily similar to adrenal insufficiency and while both respond to steroids, their treatment algorithm is grossly different. And POTS/dysautonomia feels to be a largely unrecognized part of lupus and SFN in UCTDs. Nothing is ever written in stone with lupus so I make a concerted effort to not talk in absolutes because lupus can look like anything. Picture is always muddled. A multifaceted approach is necessary when treating or stopping any therapy in preperation for anticipatory obstacles that don’t have outcomes exactly as predicted. I’m having a discussion. Not questioning you.
Didn't take offence - and absolutely, pred is only a "one size fits all" in that it is the best antiinflammatory there is! Just it is rather a sledgehammer to crack a nut in a lot of cases. Sometimes there is no choice. But when it comes to getting OFF pred - there is only one way once you have been on it more than 6 months. SLOWLY and with a lot of careful observation to see whether you are lookig at adrenal problems or something else like POTS. Not 10/7.5/5 as was the approach here - taken by a rheumy who you would hope was rather more au fait with lupus.
Agreed. This rheumie was negligent in instructions. I’m sure it’s happening a lot these days. Docs spread so thin with COVID. Great resignation over here. Healthcare system is crumbling.
forwardky.com/q-maniacs-dri...
I had a rheumy appt last week - requested by me as usual, as he pointed out, we see each other more in research zoom meeting! I had had some problems simply because of the lack of pain clinic due to Covid. If I can have well spread out physio appts and Pain Clinic I'm fine and manage my own pred, always have done. But Covid put the mockers on that. OH being terminally ill didn't help of course and the extra I was having to do left me with permanent back pain.
It was brought forward a week - to 9.30am as well. Usual maybe half hour session with the nurse plus wait - and I left him at 11.30am! The back muscle needling I'd not had for 18 months was done there and then and 2 steroid infiltrations to the sacroiliac joints - which Pain Clinic won't do because I'm on anticoags. I left with a script to go again for more when I want, if I need it in a few weeks. The difference is amazing. I really love my rheumy here!!!!
But if our system manages f2f sessions, both with the GP and the specialists - I don't think there is much excuse for the appalling service in the UK. Since August I have had urology, eye, 2x cardiac and 1x rheumy appointments... Is that being greedy?
Not greedy. Gotta do what you gotta do to keep going esp if you’re caring for someone else. I get the sense that rheum is much stronger over there than here in the states. It is incredibly difficult to find a good one that stays put for any length of time. But you’re right, no excuse. Tapering isn’t rocket science nor should it be when your rheum. Prednisone is to rheumies as aspirin is to cardiologists.
You'd hope wouldn't you - but somehow, that isn't the impression a lot create!!!!
With you and Jmiller keeping me glued to my iPad I’m late putting the dinner on this evening so I’m weaning hubby down to 7.30 from 7 o’clock 😀😀
Oooops - sorry pardon ...
😂😂😂😂🤪 A new diet strategy
I can only offer lots of gentle hugs and sympathy for the dreadful time you’ve had 🤗 🤗 🤗
Hi Bowenlady. What an awful time you are going through. So sorry. I had HS Purpura as a child - very nasty couldn't walk for three months with severe bruising.
I am being weaned off of Prednisolone last pill to be taken this Thursday and the weaning off has been very very slow starting in August last year. The last six weeks have been really tough and painful. I believe because aches and pains (on top of lupus myositis and ra) is common when you withdraw. Also had lower appetite and felt sick. The pain in my legs has been so bad it's like I've had trauma to them in some way (feel like I've had a fall when I haven't). Seeing consultant 28th of this month.
A point to note is I was on Prednisolone January last year and then had various allergic reactions (skin included). I was taken off the Prednisolone briefly and quickly then put back on when I had a spell in hospital in February. So maybe from a medical point of view if you are having allergic reactions they witjstaw you quicker? Just a thought and maybe a question to ask your consultant?
I too was diagnosed with Lupus Spring last year. So we are both on this journey together.
Keep on going friend I am sure with time your consultant will get you onto a prescription which works for you. We are all here for you!🌻🤞
In an allergic reaction you often can use a short course of pred and stop, if you were reducing the dose over the course you can stop fairly easily up to a couple of months. Beyond that you have to taper slowly once you get to 10mg to allow the adrenal function to start up again - irrespective of the symptoms of the problem for which you took the pred in the first place. Had BL got off the pred when she originally got to 10mg, it would probably have taken just a few weeks at most. The problem now is that she has been on it for much much longer - so the tapering process will also take longer as the adrenal feedback system is rustier ...
Oh god what awful healthcare you've received. If you've been on pred for a long time, as everyone has said, you need to come off really slowly. My goal for the YEAR is to come down from 5mg to 4mg of pred. I've been on pred for 5 years, and over time reduced from about 10mg to 5mg.
There are lots of different slow methods. Mine is to drop 1/2mg one day a week until I feel alright, then 1/2mg 2 x days per week until I feel alright, and so forth. Then when I've reduced, stay there until I'm stable (it takes ages for the adrenals to adjust).
I'm also on hydroxy, which helps in lots of ways, and privately on low dose naltrexone.
Hi treetop 🤗 I'm interested in how you are tapering. Do u mean you drop by 0.5mgs at a time? This is how I'm doing it..but I have just been reducing like that. Have to say it's taken me ages to get to 5mgs daily which is my current dose . When I drop by 0.5 I too wait for ages until I'm stable enough to consider another drop. Taking it like you suggest seems like a plan I would like to adopt too.
So u drop by 0.5mgs one day per week only..then take usual dose for the rest of the week..then when u feel stable enough you'll drop another day by 0.5..would u spread those days apart? So for instance Monday n Thursday? 🌈😽😽Xx
Yes that's right. I've tried Pmrpro's approach but it's too organised. So when I do me weekly meds, I just space the new dose apart. Good luck.
That's really helpful...Thank you 🤗Good luck to you too 🌈😽😽xx
Hi Krazykat, I have a "random" system of reducing steroids in consult with my rheumatologist. Let me know if you would like more details.
Hi Lily 🤗Oh yes please..that would be very helpful 🌈😽😽xx
Are you on Facebook?
No I'm not 🌈😽😽xx
Do you have a Skype account? I think you have my email?
No neither of those things Lily. I'm so sorry I'm not that cyber savvy..can u tell? 😹🌈😽😽Xx
But how do you get 0.5 off the tablet? If this doesn't sound daft. My tiny tablets are 5mg and I have a few 2.5 left.
You can get 1mg and 2.5mg. So for a 4.5mg dose...well you can work it out. You have to press docs for the 1mg, particularly to get them gastro resistant, but they will do it if medically necessary.
If I go to Lloyds pharmacy I get ordinary ones but if I go to Boots they give me the gastro resistant so I always go to Boots. I will ask about the lower doses when I see him. Thank you. This forum really is a wealth of experience and knowledge.
Some 5mg tablets have score lines to break them so it is worth speaking to your pharmacist and both enteric coated and plain pred can be obtained in 1mg and 2.5mg tablets. You can make up doses descending 1/2mg at a time by mixing 2.5mg and 1mg without cutting tablets - until you need 1.5mg
Hi Bowenlady 🤗 Gentle hug to u lady..you've been through it for sure!! 🤗🤗I have to admit when I read your post about the Pred reduction plan it made me shudder n I did think 'thats too quick'...why? Coz the same kinda thing happened with me!!
I was put on Pred in 2018 along with hydroxy..the initial dose of pred was 20mgs for me. I managed to reduce fairly quickly UNTIL I got to 10mgs..then I started to have increasing symptoms again. My dermy put me on a drug called ciclosporin which is an immunosuppressant n increased my pred to 20mgs again at that point. Then I started reducing pred..got to 10mgs n again I started struggling!! As it happens the ciclosporin was not the right drug for me...I even found it hard to take the pills. This went on for 18months. Then I asked my dermy if I could try Methotrexate n he agreed..so I stopped Ciclo..n started MTX. This has been a game changer for me n my general condition is much improved. However I'm still on Pred n am having to reduce in tiny amounts..0.5mgs at a time. I've been self managing now as haven't had dermy appt since May 2020 but I'm happy to say I have managed to reduce the Pred to 5mgs daily!!
I'm glad that you're staying where you are on it for the time being until u can get further help from your rheumy..to me it sounds like you could do with another medication in order to come off the Pred. They really are the devil's tic tac...extremely helpful..n then hard to get off of!! 🌈😽😽Xx
Thank you for that. As an update I have just a few minutes ago received a letter informing my I have an appointment with the rheumatologist on 25/1/22. Thank goodness for that. I took a photo of the rash on my legs (after the excellent advice on this forum to records everything) but damn I forgot about the rash around my nose and going out into my cheeks. When I went to show the GP it didn’t go down well as I dropped my mask a bit. Lol! We wear masks everywhere here in Wales. X
I'm glad you've got an appt...do not let him do this to u again!!! It's so handy keeping the diary isn't it..especially for times like these. I can explain exactly how I felt n when I felt it to my consultant..it gives them a clearer picture.
You're just finding out what helps you n what doesn't help you.. we're all individuals and every day is a school day!! 🌈😽😽Xx
Hello. I agree with KrazyKat as she and I have very similar conditions and medications. I’ve been on prednisolone since Nov 19 (started at 30mg) and trying to reduce from 10mg for the last 18 months with varying levels of success. However we have a great lupus nurse in Lothian and she suggested a very gentle taper of half a mg a month and I’m delighted to say I’m now down to 2mg a day! The last two tapers have not been without problems and I had to add a quarter mg a couple of times (it’s not easy cutting a 1mg tablet into 4!) however I persevered. It’s good that you’re seeing your rheumy next week however in my experience professionals nearer the ‘grass roots’ have been more helpful with this problem. And the lovely people on here of course. Good luck.
Hello Barbara 🤗 Well done in getting down to 2mgs!!! 🙌I'm hoping to finally get an increase in MTX..got a dermy telephone appt on Friday!! 🌈😽😽Xx
I’m managing on 15mgs MTX a week. 🤞it continues. Plus 1800mgs hxy a week.
PS good luck with the appointment 🤞🍀😉
Thank you. I'm on 15mgs MTX n 2000mgs hydroxy per week. Am looking to adopt treetops approach to tapering. Take care 🤗💜🌈😽😽xx
Thank you. I learn more from this forum than anywhere! I don’t know how I would have got through the last 2 years without you all, seriously. Thank you all. I feel more informed going to these appointments but I knew nothing about weaning and it was just sprung on me. The consultant doesn’t say much or explain the effects of any meds. I am definitely going to ask about the very low mg pred as I want to be on as low a dose as possible. Just a quick question to anyone, does the reduction of pred make your hair thinner because you can see my scalp a lot over the past couple of months? It’s noticeable because although I am nearly 66 I have very ginger hair (goodness knows why).
Hi Bowenlady, you're not in the Borders are you? You're experience sounds very similar to mine. I'm on hydroxychloroquine 200mg x twice a day, 25mg methotrexate by injection once a week and 10mg prednisolone a day for well over a year, and my lupus is still not controlled. I started on a higher dose of pred in Feb 2020 and was told to reduce quickly, in the same way you were, once I started HCQ and before the MTX had reached full dose. I yo-yo'd up and down getting worse and better with some symptoms lagging, and getting totally confused until the rheumy decided I should go back up to 10mg and not consider reducing until my symptoms (mainly rashes) were controlled (that's not going to happen while there's a sun in the sky!) and my ESR was consistently below 20 (it's only been below 20 four times in total in the last 2 years of monthly blood tests!). I keep asking about reducing or considering other meds which might enable me to reduce slowly but I'm only a patient so what do I know?I hope you get a solution soon that works well for you. Let me know if you crack it.
I’m in South Wales. I don’t get blood tests done unless I ask about something specific, like sticky blood, which they said was borderline. So does that mean it is or isn’t a problem. I know other people have regular blood tests. I should have asked. I really want to get this Prednisolone reduced. I am fed up of this fat face with huge dimples in my cheeks or as my 8 year old granddaughter kindly calls them “cheek holes”! Plus the constant bruising and blood blisters. But I’d rather put up with them than the pain I felt during this weaning. I hope we can both get off them in the future. X
It IS possible to lose weight on pred, just harder work and sometimes slow. I lost 35lbs while still at well above 10mg and MrsNails on our forum lost 2 and a half stones in about 6 months using the pre-diabetes programme her GP offered
I only get regular blood tests, the usual full blood count they do for anyone who has any problems, because of the methotrexate to make sure it isn't poisoning me, they're not the 'proper' lupus blood tests which I recently discovered I should be getting every 6 - 8 months, apparently. I've no idea when I'll see anyone again but I'm going to fight, again, for something to be done so that I can reduce the pred. Like you, I'm sick of the fat face and the weight gain, which I really can't afford. I want to try and make myself healthier and lose weight but it's nigh on impossible on pred. But do they care? Keep going and good luck! x
And Slimming World consultants all say that steroids do NOT make you gain weight. They may make you more hungry. I feel sickly after eating and leave some of my food yet I’ve become so overweight compared to before.
My rheumy and GP have both said that pred will have affected my metabolism due to the dose and length of time on it but I'll be sure to tell them that Slimming World say they don't make you gain weight 😁
Please do. They are insistent that it does not make you put on weight. It’s awful because they make you feel like you are making excuses for not losing weight and have been cheating!
I keep answering people who are asking other people question, because I’m useless at this stuff. So if anyone asks someone something and they get and email address or something they’ve asked someone else for, do me a favour and just ignore me! Lol! And just to update on above. Been to nurse for pneumonia and flu jab and he looked at my ankle after the fall and it is still infected so more antibiotics. But not to worry because of course the first doc said it was just a bruise that I wasn’t used to seeing! Blah!
Hi,
Thought deeply about your post heading.
Is “weaning off Prednisolone “? never going to happen for most lupus sufferers? For me I’m on 5mg Pred every other day effectively 2.5mg per day.
Many here speak of a physiological maintenance dose of around 5 to 10mg per day. But these Pred dosages are usually discussed between doctors and their patients which have to based on individual bespoke responses?
Doctors differ, patients differ! Difficult.👆🧐
For me my hospital consultant doctor is more credible than my GP who never sees me due to covid lockdown.
Xx
Steroid tapering, I've found, is beyond frustrating. I've been in a similar position to yourself. Every time I tried to taper, it triggered a multitude of issues. Let's just say since 2018, I'm still trying.
What we have both experienced is very common, and after speaking to a number of hospital Consultants, the remedy is to find the right pace (formula) to taper. If it doesn't, go back to your original dose, and then apply a different taper tactic. Repeat the same process, if necessary. It would be a miracle if successful tapering can be achieved at a fast pace.
I started on 75mg in Dec. 2017 and in 2022, I'm on 5mg with a view to eventually be rid of it once and for all, soon. However, my stumbling block now is steroid induced adrenal insufficiency. So another obstacle to overcome but from what I've learnt over the years with steroids, I need to decide whether I'm either going to be the tortoise or the hare. With steroids, it's always the tortoise that wins the race.
Hope the above us useful and be patient.
I have been on Steroids since 2017 as my Lupus caused a thing called Organising Pneumonia and was on 40 mg for months slowly dropping down over months but the side effects for me was glaucoma. But if I went below 10 mg my pneumonia came back. I have tried the lot through many years Glucosamine, Methertrexite , Mycophenolate. Now I really only take the steroids but in all of these years I have never had bruising , I really think you need a proper blood screening as sometimes there is a genetic problem. We only found out in the last ten years my husband family had Factor five Liden or sticky blood.
A huge Thank You and rash update
Update following my rheumatology app.
Weaning off steroids causing mood changes?
DIAGNOSIS- FM Anyone?!
still uncertain
