Vasculitis UK
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COMING OFF PREDNISOLONE

Hi All,

I was diagnosed with vasculitis just over a year ago.

I reduced pred very quickly down to 11mg and then by 1mg a month as my consultant thinks it could be a one off as my bloods are ok and I have not had a rash since i was diagnosed.

The thing is i got down to zero pred and found I had severe pain in all my joints

especially at and during the night,I also sweat a lot during the night from putting my head on the pillow until i awake.

I phoned my G.P and was told to go back onto 1mg and i have found after a week i feel 10 times worse with the joint pain and sweating.

I have sort of known all through this that it is more than a one off but I am finding

no one seems to be listening to me,very frustrated and depressed.

27 Replies
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Really not quite sure what the GP thought 1mg would do!

The joint pain and sweats may be showing you are having a flare of the vasculitis and it is continuing as the symptoms get worse. What were you diagnosed with originally? If someone on my home forum described your symptoms I think a lot of us would say that PMR/GCA must be taken into consideration.

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Hi,Thank you for your reply.

I was diagnosed with systemic vasculitis but any explanations from any medic have been vague and I don't even know what PMR/GCA means.

I feel I have been left in the dark or worse not convinced that the people involved in my

care have any idea themselves on this subject.

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PMR is polymyalgia rheumatica and GCA is giant cell arteritis - 2 illnesses on a spectrum of vasculitis. "Systemic vasculitis" isn't really a diagnosis - any more than saying "spaniel" doesn't say if it is a Cocker, Springer, King Charles or whatever. Diagnosing vasculitides is difficult - I'll give him that - but you needed more supervision/advice.

I agree - you have been left in the dark and I personally would want a team more willing to explain. But above all, you are having a flare of probably that vasculitis. It wasn't a one-off - it is still there and while the symptoms were being kept under control with the pred down to quite a low level (it would seem so you were lucky) it isn't any more. In some patients the fact they are taking pred is enough to stop the blood markers rising again - no-one knows why, it is just so, and I know several on the PMRGCA forum.

I think you need to go back to the GP on Tuesday (darn BH Monday!) - tell them it is an emergency appointment you need and be firm. Good luck

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Hi,many thanks for that,I have an appointment with my Rheumatologist on Friday

but as you say I will get an appointment on Tuesday with my G.P.

I was aware that systemic vasculitis means that more than one organ is involved but was told other than that they do not know what type of vasculitis i have !

confidence builder or what.

I also forgot to mention I am so weak and tired feel like cr*p and have sinus problems too.

Thank you so much for your advice I think it has given me the push I needed.

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Did you have sinus problems before? What have they looked for?

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Hi,I have had sinus problems for months but out of 3 specialists, 3 G.Ps

and a Nurse practitioner none have took any notice.

So frustrating !

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Have a read of this

mayoclinic.org/diseases-con...

I'd want a doctor to consider and rule out granulomatosis with polyangiitis since there can be rash in between a third and a half of patients:

emedicine.medscape.com/arti...

It probably isn't - but I'd want to see it ruled out.

Maybe a different rheumatology unit? Where are you?

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Hi,Sorry I did not get back to you Yesterday I turn off the laptop and go to bed to watch tv.

I have had a look and i am sure I have read it before as when this first came out I thought H.S.P. fit my symptoms at the time,I did have bowel involvement.

I am in the north east and I need to find some medical person with experience in Vasculitis.

The fact is now I need to be seen A.S.A.P.

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The rheumatologist at QE in Gateshead is a lovely guy and very good - Dr Saravanan. He has a particular interest in PMR/GCA but networks with all sorts of specialists to improve management of patients.

Dr Alice Lorenzi at the Freeman/Royal Victoria in Newcastle lectured at a VasculitisUK support meeting on the investigation and diagnosis of vasculitis - you would think she might be able to help you.

What hospital are you under at present?

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Hi,I will certainly look into getting an appointment with Dr A Lorenzi.

I will try not to but if I have to I will pay to see her for 1 consultation.

I am under Sunderland Royal.

This advice is invaluable thanks again,I will keep you informed what happens.

Cheers,

Tom.

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Hi,I went for an appointment with my Rheumatologist on Friday and I asked for if I could get an appointment Dr A Lorenzi and he said yes.

He told me I don't have Vasculitis,I asked what else it could be and he told me that if I don't accept it is not Vasculitis then we can't start going down another route.

I also asked how many patients he had with Vasculitis and he told me loads.

So now I am loosing sleep over this on top of everything else I feel blackmailed.

I will be doing some phoning around Tomorrow see if that gets me anywhere.

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Reducing prednisolone made my joints very painful: the first time it really went for my knees, the second my ankles and feet particularly. But it also made me feel like I'd hit a wall of pain and fatigue. It's not so bad for me with the higher dose drops but difficult with the lower doses. I think it's to do with the way your body adjusts. I found a very helpful guide somewhere on the Vasculitis uk site to how prednisolone works, so do have a look. I'm back to 10mg now: the sweating is very annoying. When my GPA is very active I get sweating and shivering, with the prednisolone it's just sweating. Hope you get sorted out soon.

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Hi Ziggy,Thanks for that I will Have a look,I dropped very quickly by 5mg at a time to 15 mg

then when down to 11mg 1mg a month.

Thank you.

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I've done fast drops too: most recently 40-30-20-15-12.5-10 over last 6 weeks. So far I've not had the joint pain I've had previously (good news) but I'm so tired. Hope things get easier for you.

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Hi,I found that on Vasculitis UK thanks to a post from Suzym2u below .

Good luck to you and thank you.

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You may find this article useful pages 8/9 from the Autumn 2017 Vasculitis UK newsletter drive.google.com/file/d/0Bw...

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Thank you I found that helpful.

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I don’t want to confuse you any further but I was diagnosed with EGPA in November last year so new to this too . I share a lot of your symptoms, (as does GPA as earlier suggested by PMRpro) It started for me with sinus problems (blocked for over a year before) which was largely ignored by my GP. Then I started getting severe and random joint pains followed by skin nodules and a sudden rash. You also mentioned bowel involvement , I also ended up with colitis which caused my collapse and hospitalisation, which is when the intense treatment started .

I am now down to 10mg prednisolone (from 60) and felt terrible after quick drops down from 60 to 40 then 30 but stabilised once I got under 15mg . I was due to start reducing by 1 mg a month also, but some recent possible flare up symptoms emerged so I’ve stayed on the 10mg . The fatigue is still a daily issue unfortunately which could be the disease, methotrexate or both . As others have suggested though it is important to get a more specific diagnosis so you can receive the correct treatment. Good luck !

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Thank you for that and good luck to you.

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That sounds like a swift reduction! After 4 years I'm still on 5mg (from 60mg), I experience the same symptoms as you describe although the severity is reducing.

The night sweats are annoying and intrusive but I have been assured that they are part of my new normal.

The effects of reducing prednisolone are dramatic and you seem to be having some withdrawal symptoms.

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Hi,I have now been told to stop the prednisolone altogether,I really don't know what to believe!

Thank you for your post.

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Hi, I’ve just tried to taper from 10mg to 7.5mg on a great slow schedule. I have had a major withdrawal for 4 days, nausea if moved I was dry retching, a migraine so painful for 2 days, bad stomach, temperature, feverish, and excruciating pain in my joints, it has been awful. Just wanting to know if anyone else has experienced such a reaction, if it is usual. Have decided to revert to something slower as I can’t not go through that again - horrendous experience!

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All those COULD be symptoms of poor adrenal function - or they COULD be coincidence.

I assume you have gone back to 10mg? If you used a slow schedule and took at least 6 weeks to do 2.5mg you shouldn't be suffering withdrawal. But you may well have missed the dose you need at present and gone straight to a dose that simply isn't enough all ways round.

Below 10mg it is advisable to restrict reductions to 1mg - at any level a reduction shouldn't be more than 10% of the current dose. It is all to easy to overshoot.

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Hiya, thanks for the reply. My husband got a schedule where you taper over 3 months. I had a bad reaction when dropped from 15 to 10, some symptom flare and terrible aching joints which haven’t really gone. But this was a whole lot worse, I haven’t felt so ill since had chemo and in the height of GPA. Yea we are looking at something slower as it was awful, but conscious I have to taper as have been on high steroids since May 2016. I just wondered if anyone else has experienced anything similar.

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How high a dose? Above 15mg? I know a load of people on doses above that for much longer and they didn't disintegrate.

Below 10mg you are now almost at what is called a physiological dose. The body must have the equivalent of about 8mg pred in the form of its natural corticosteroid, cortisol, in order to function. Above that dose the adrenal glands stop producing cortisol - until you get down to well below 10mg. But they can't just wake up and work properly - they need time and a staged return to work. You can reduce fairly fast above 10mg - below, it's a very different kettle of fish when you have been on pred for more than 2 years as you have. It will take rather more than 3 months to reduce from 10 to zero.

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In the height of my disease I was in 140mg, so has taken till June of this year to get to 10mg as only recently my GPA has been stable. I know I can’t reduce to zero in 6months, but I am trying to reduce from 10 to 7.5mg over 3 months. I was simply shocked at my body’s reaction and as I said just wondered if others had had a similar experience. In light of my reaction we are tapering to 7.5mg slower than 3 months.

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Three months to get to 7.5mg from 10 is quite reasonable - 1mg per month. But done as 1mg per month and preferably using a slowed down approach so you don't go from every day higher to every day lower in a few days. We have loads of practice over on my home forum - PMRGCAuk.

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