Any information

[Hunter1234_]

On 50 milligrams prednisone until 3 weeks ago. I had to take that amount but it made me feel horrible. I have been decreasing 10 mg weekly for the past 3 weeks. As of two days ago I am now on 20 mg a day with cytoxan every other month daily. When will I feel the decreased effect of taking prednisone at the 20 mg dose. I still feel like I'm on 50 mg a day. I have ADHD, panic attacks, and health anxiety. Add that to any sort of prednisone has been horrible. So should I soon feel the lowered effects. Anyone have any ideas. Thanks I've enjoyed all the helpful conversations.

[jgold]

You speak of prednisone and cytoxan, which we in the UK call prednisolone and cyclophosphamide. I therefore assume you in the USA?

As vasculitis patients we are of course all different and - at least here in the UK - there can sometimes be a concern as to whether the specialist treating us is really experienced in vasculitis.

The two points which occur to me from my experience of this disease are -

1. The rate at which you are reducing prednisone by 10mg every week seems rather fast.

2. Can you be certain that the symptoms you are suffering are caused by the prednisone? Is it possible that they are side effects of the cytoxan, or even caused by the vasculitis itself?

As well as waiting to see if there will be more helpful replies on this website, you might like to have a look at the USA site vasculitisfoundation.org, where the 'contact us' link provides a facility for asking questions.

Hope this helps - if only a little bit!

[Rachelle_Labelle]

Hi Hunter1234. I don't think prednisone is the reason you feel terrible. I took both cytoxan and prednisone. Cytoxan is exactly that, toxic. It upset my stomach. The prednisone for me was an upper. It gave me a moon face and I looked 15 years younger. My hair and nails were in better shape. I had a voracious appetite and enjoyed a constant good mood. The vasculitis can also make us sick. Before the diagnosis the leg and foot pain were excruciating.

As I recall the only concern with prednisone is the negative impact it has on our bones. Over time, say more than two years, it eats away at the bones. A rheumatologist might be able to help you feel better.

[ZiggyDiego]

High doses of prednisolone affected me mentally too: once I got below 20mg things started to get easier. Like you, I've done big drops which made me feel very unwell for a few days, then I would adjust. From 15mg I went down more slowly and it was easier. Prednisolone also affects many other parts of the body: for me it was my musculoskeletal system and eyes (glaucoma). My consultant told me that above 20mg the side effects are bad regardless of how high the dose is: it doesn't matter whether you're on 20 or 80mg. Hope you start feeling better soon.

[ipswichlady]

hello Hunter,

I was so sorry to learn about all the problems you are having. I have been on Prednisilone for 6 years now to help me withTakayasus Vasculitus. Plus several other tablets etc.

As time goes by I am sure things will level out for you, and wish I had some advice to give you. Make a list of questions and any fears you may have and make the very best of the time with your consultant. Sometimes it is a rough old journey, but I too, like you, are a bit older, I am 70 now. I am convinced all the medication I have, including methotrexate, has kept me going and am thankful for all that has been done for me. Enjoy each day as. Much as you can, enjoy your family and good luck for the future.

Ipswich lady

[Alliand]

Hello Hunter,

I agree with jgold. Your adrenal glands produce cortisol naturally and have much to do with mood. When you take prednisone for any length of time, even in moderate doses, it shuts down your own natural production of cortisol and the med takes over. That is why some people feel great on prednisone and others not.

Nonetheless a reduction of 10 mg a week seems drastic. Prednisone tapers are to be gradual. I think that is causing your mood swings. My doctor is tapering me from 16mg by 4 mg. every 3 months and my mood is stable, but original musculoskeletal pain has returned at 8 mg.

I would speak to your doctor, and/or get another opinion.

Best...

[Paprika60]

Hello Hunter,

I am in London and four years ago I too was put on high Prednisolone (40mg) and every week I lowered it by 10 mg. So it is not so unusual. However I couldn't stop taking it after the fourth week as my vasculitis didn't calm down. The reason I had to take it was due to having a major vasculitis attack after a Rituximab therapy. I had an unfortunate consequence from it. I had developed very nasty neuropathy (from which I am still recovering) and nasty hives and blisters and swelling on my feet and legs. So the A&E (emergency here) had to put me on high Pred. It did help with Vasculitis but I absolutely hated the effects as I couldn't sleep a wink and it got me highly anxious and emotionally unwell. So I think everybody responds all differently and doctors really have to adjust according to each individual's response. Medication is never a one size fits all sort of thing. Sadly the reality is that most doctors will follow the prescribed procedures that are generally effective for the larger amount of patients. So it is up to you to persist and keep asking questions and try to get the most out of your specialist. It is not easy but then what is easy in life for those of us specially blessed with this predicament life brings?

Good luck to you!!!