LUPUS UK

presnisone taper

Hi all. I was just diagnosed 3 weeks ago. Having a really hard time. The doc placed me on prednoisone which helped a bit and started on 15 mg and then 10, 5 and then off. I moved to 10g 3 days ago and all my symptoms are back with a vegenance. Has anyone experienced this with a mere drop of 5mg? Is this reasonable to communicate with her that I can't handle the taper this quickly? She also placed me on Plaquenil. Before the taper a ton of peoblems started again too. So I just feel miserable. Any advice appreciated!

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My sister using 40 mg predisalone a day..feeling much better

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Thanks. Wondering if I am tapering too soon.

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How many days are you having on each amount?

I’ve had several quickly tapering courses (7-14 days) but normally start higher at 40mg then reduce by 5mg every couple of days.

You may need to start higher or stay on 15mg for longer if your symptoms are coming back but you need to do this with your doctors help/ advice especially as you are so newly diagnosed.

I’m on long term steroids now but have a similar problem that when I reduce to 10-15mg it all re-flares.

The plaquenil will take a few months to work but many of us notice a big difference then.

Hope you get the right levels to feel much better soon. It can feel very scary and miserable at first but when they get the drugs right you should feel much better.

What are your lupus symptoms?

X

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Hi Melba1. Thanks so much for your response. Really appreciate. I was on 15mg for 2 weeks. 10mg is written for 1 week. And then 5 mg. for 1 week. I have been on 10mg for 3 days now.

My lupus sxs include: SOB, tachycardia, fatigue, chills, fevers, joint pain, dry eyes, dry mouth, hair loss, cough, hoarseness, peeling and itchy skin (dry also) on face, foggy thinking, gum pain and bleeding, rib pain, inflammation of pancreas and stomach...

But my MAIN issues right now with the change in pred is the pain, SOB and rib pain. It really stinks.

I feel like my entire life has changed now that I have lupus. I never thought this could happen...

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It’s a massive shock to the system - both physically with all the unpleasant symptoms but also mentally with having just been told you have a disease like lupus. It can feel like you will never get better? I have felt like that too but after many years with lupus I have learnt that if you take the right medication and learn to pace yourself you will also have many good times too.

My symptoms were almost identical to yours at the start (minus the gum issues) and the plaquenil makes a massive difference to the chest and joint pain, SOB, rashes etc.

You may need stronger/ longer steroids to tide you over until the plaquenil kicks in.

Do you have a good rheumatologist or is it mainly your GP you’re seeing?

X

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I have a great GP and I also have a rheum who I have seen once who gave the official dx. My GP has had my back all the way. I have yet to develop the relationship with the rheum. She is the one though who is managing the plaq and pred. I know my journey has just started but it already feels like a life time. I feel sad....

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It is completely understandable to feel sad but it’s great you have a really supportive GP and although the diagnosis is a nasty shock it does mean you should get the right treatment and start to feel much better. Not much comfort at this stage I know but this might be the worst you’ll ever feel.

I know some people have written on here that you might be getting steroid withdrawal symptoms. I’m not a doctor but I think that’s unlikely in your case as you’ve been on them such a short time so tapering shouldn’t be the main issue. It is more likely that you haven’t had enough to get the lupus under control so when you reduce it starts to come back. I was scared of taking pred initially but i have (reluctantly initially!) come to terms with it and my rheumy told me last month that I would probably be on 10mg forever and that shouldn’t do much damage.

Lots of love x

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I emailed my GP last night as I feel I will get more response from him than the rheum. It sounds like from what I have been reading here and another forum the GPs tend to manage more and are hands on in the treatment. So I am hoping to hear back from him on what to do. Today has been a really hard though. I am dizzy, beyond dizzy. For the first time since my diagnosis nthis started (yesterday). And my heart has been racing at rest and I am short or breath. Ugh.

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If you're very dizzy and short of breath, you definitely need to get advice from GP or rheumy - have they not got back to you yet? Do you have out of hours GPs?

I've got very nice GPs but they don't know much about lupus at all so my rheumy has said to go straight to him for things like this, especially with changing steroid dose. I reduced mine without asking him and got very told off!

Let us know how you get on

x

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Thank u dear...my sister...she is diagnosed...she has sle lupus...she was very critical that's why i think she had to use 40 mg..am taken her soon to her Dr..like every two weeks for altrasound and blood work..her symptoms are..swelling in her belly feet and hand...rash all over her skin that leaves Scally dry skin after it gone...not walking on her own...nervous break down..she talk stuff that make no sense at times...pain under her feet with burning.. Joint pain..hair lost rapidly fever go and come Ulser in the mouth...acute organs..but the kidney is a little more effected...but she recoperating from them 70 percent much better..but our fear is that we don't have a rhuematalogist here in guyana she is seen by a general physician 😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔😔

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Wishing your sister all the best. I am so sorry she is critical. Hoping the doctors can consult and find an expert to help her. Keep us posted.

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While tapering withdrawal symptoms are normal.

But making it zero may not be possible.

Body needs certain amount of prednisone which is being produced by a gland over the kidney, if the same is not in order, we need to depend on external input.

For the last 17 years I am on prednisone 4 to 8 mg.

By God's grace no side effects so far.

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MVJohn-have you ever been able to get off pred? Are you on other meds?

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I am not able to come out of pred, last year on one sunny Sunday missed the morning dose and went to church. After attending a 3 hours long service, become unconscious.

Other medicine I have with prednisone is azathioprene, mmf, cyclophosmamide, and now on cychlosporine

I have a very good doctor, ex dean of Stanley Medical college Chennai, India

Dr. V Krishnamurthy.

With his help and God's grace, still I am working, only 30 months to go for retirement at the age of 58.

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Congrats! You are so close to retire. That's amazing. I am wishing you many well wishes!

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Thank you, God bless you

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And to you.

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This is normal. Please do discuss dosages with your docs. I've been unable to fully taper from 7.5mg to 5mg (which is my set goal). I just get a flare again.

One thing I do know if that you can't help yourself in other ways until the symptoms are more or less under control. So unfortunately Pred is the only thing that'll do it.

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Pred is so potent. I think I feel like I am annoying my doc and that's my hesitancy. But I have to get this managed. I assume rheumies deal with autoimmune patients all the time and have compassion. I just don't want to to a pain....

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There's always someone worse of than us, so we feel guilty about taking up their time. And the NHS is in crisis. But lots of us just on the cusp of escalating serious illness have a chance to have some sort of quality of life. It's important that they work to get it right. Good luck.

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Agreed. I need to get on top of this and learn to advocate for myself.

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Hi stm

Sorry your struggling to taper prednisolone and trying to come to terms with a lupus diagnosis!. Not easy to do , it's a huge adjustment to your life. Lots of TLC required and time to come to terms with it all!. Your certainly in the right place for helpful advice and info.

How long have you been on Placquenil?. I certainly think your taper is too much as this drug may not be working yet. Some Rheumy's give steroid injections to tide you over but you had one three months ago?. Did she say when she wanted to see you again?. You could always try to bring this forward by asking for a cancellation or get advice from the Rheumy nurses if your hospital has them. They liaise with the consultant!. Do hope your better soon. Horrible having symptoms return. Keep us posted. X

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Hi Misty14, thanks for your reply. I started the pred and Plaquenil at the same time. So we are looking at 3 weeks-ish now for both. I have actually not had a steroid injection. Just taking pred pills. Maybe that's an option in my wrists? I see my rhemy again in 3 weeks....feels like forever. While I can email her it doesn't seem adequate. I am in the US so it's a bit different. It is a huge adjustment! I used to be able to do amillion things in one day. And now just a few causes peoblems!

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Hi there, I'm trying to get from 10 mg back to 5, it's taking ages, I think a drop of 5 at once is too drastic. I'm dropping 1 mg at a time and have got to 7. I would tell your GP what is happening and taper more gradually, good luck x

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Thanks for that idea. I can see how going 1 mg at a time could be very helpful kt11. Thank you for the idea! xx

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Hi Stm252,

We published an article on our blog which has a section discussing what to do if you are newly diagnosed - which you can read here lupusuk.org.uk/getting-diag...

Yes, you should discuss how you feel with your doctor. This helps build a good rapport with your doctor and can ensure you receive the correct advice and treatment. We published a blog article on ‘getting the most from your medical appointments’ which you can read here: lupusuk.org.uk/getting-the-...

Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk .

To read our factsheet on ‘LUPUS: and Medication’, click here: lupusuk.org.uk/wp-content/u...

We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

Please keep us updated, wishing you all the best.

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Thank you for all the information. I read it today. Appreciate.

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