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Vasculitis UK
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More problems with prednisolone tapering

Hi folks, I was diagnosed with aortitis in dec 2015 and have been on prednisolone since then. I have tried tapering a couple of times last year, using alt days tapering and dead slow tapering, from 4mg. Both times, when I got to around 2mg dose, I began to feel unwell, with nausea, sweating, feeling tremulous and generally not well. At that point I increased up to 3mg and discussed this with my nurse specialist, who suggested that I 'tough it out'. I wasnt too sure about that so waited until I saw my consultant in July this year. He said that toughing it out may not be a bad idea and mentioned that my body would be producing some cortisol with the low dose of 3mg that I was taking. He also said my blood electrolytes were fine, with no suggestions of adrenal problems. He was keen to get me off steroids, as am I. He suggested a 1mg per month drop then stop. I wanted to do 0.5mg per month drop and he agreed, but thought the 1mg per month would be fine also. So I dropped to 2. 5mg for a month, felt ok, then to 2mg for a month, felt ok. I then decided to do a 1mg drop for a month to 1mg, then I stopped on oct 4th this year. I was ok for a few days, then started to feel unwell, with intense bouts of nausea, debilitating fatigue, light headedness, some dizziness, I vomited 2 days ago after a huge wave of nausea and have continued to feel quite wretched. On monday, my pharmacist delivered to me some Stugeron tablets for nausea, which helped, and I rang my gp yesterday for further advice. I told him I felt quite ill and that I thought it might be steroid withdrawal. My gp didnt ask for any symptoms and suggested that I take 0.5mg daily, until I see my specialist nurse tomorrow. This is my 2nd day on 0.5mg and I dont feel any better. I now have ringing in my ears, my head feels like cotton wool and Im still nauseous . To sum it up, I feel totally wretched. I wasnt impressed with the gp I spoke to, he didnt ask me any questions! I know about percentage of dose drops etc, but didnt feel too bad for the month that I took 1mg. I dont think I have any other illness. I need some advice please, Im so fed up with trying to get off steroids.

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Suzy cat

Put Synacthen Test in your search engine and then ask your GP for a test asap.

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Exactly what l would have suggested; l had this test after trying to reduce my steroids over a 2yr period, l was unwell once l reached the 2mg level. This was when my Ophthalmology Consultant - now retired - suggest l have the Synacthen Test to see what my adrenal glands were doing.

After the test, my adrenal glands showed they were only producing 1.2mg, hence l'm staying on 5mg. My Vasculitis Consultant is quite happy with this; having said that my new Ophthalmology Consultant isn't but when l see her again l'll just refer her back to my notes and the Vasculitis Clinic.

Sally

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Thank you both for yr replies, Ive heard of the synacthen test but cant understand why my consultant hasnt had this done. Will my gp do this without asking my consultant first? Im keen to see whats what, instead of dancing about in the wind an continuing to struggle. I vaguely recall reading somewhere about an injection too, that can stimulate the adrenal glands. Do you know anything about this? X

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Hi Suzycat,

l put in Synacthen Test into Google and it came up with this website: patient.info/health/synacth...

Basically reading through the lines, it doesn't say you can or cannot ask your GP, you probably know your GP better than you Consultant; if you were me, l'd ask my GP first and see what happens.

Best of luck and try not to get too worked up about the test, after all you've probably had lots of tests already and it's just another one!

Sally

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Hi Sally, thanks for the link, I didnt realise what it involved. Yes, I've had loads of tests lol, experts all of us I reckon! Thanks 🐱

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I agree for the test. I managed to get off preds last January ( I was on them from November 2014). I also had issues when I went down to 2.5mg. I reduced 0.5mg every 9 weeks.

My withdrawal symptoms were joint pain and fatigue. They lasted for months.

Do you have a specialist nurse you could call instead of asking your GP?

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Hi Zoe, Im seeing my nurse specialist today, I'm going to ask her today. Thanks for reply 🐱

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If you are struggling. I would suggest the following if you were well but you need to be stable first. It is better in the long run to taper v v slowly and be successful rather than run into problems. 1. See a specialist vasculitis nurse or phone your hospital helpline.

Once stable after 1 month on 1 mg taper v slowly ie week 1 3days 1mg 1 day 0.5 3 days 1mg

Week 2 2 days 1 mg 1 day 0.5mg 2 days 2mg 1 day 0.5mg 1 day 1mg

Week 3 alternate 0.5mg and 1mg

Week 4 0.5 mg

Then hold it on 0.5mg for a month.

Then repeat the process with 0.5mg and half a 0.5mg tablet. The hold it on 0.25mg for a month then repeat with 0.25mg and zero.

Some people just need a longer taper. Hope this helps.

Also ask for the synachthen test.

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Hi Amy, I tried the dead slow taper last year, over a repeated 7 day cycle, ie 1 day new dose, 6 days old dose etc, but again when I got to 3 days 2.5mg and 4 days 2mg, I started to feel unwell. Im seeing my nurse specialist today. Thank you for your input. 🐱

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Hi Amy, no-one mentioned that level of withdrawal to me l hope it works for you Suzy.

Sally

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You MUST insist on being referred to an endocrinologist - because your rheumy obviously doesn't understand much about adrenal function. Your adrenals may or may not be preducing something - but even a couple of mg of pred can be the difference between being OK and not. One lady on the PMRGCA forum felt fine at 2mg - but the synacthen tests showed she has no adrenal function at all. You may manage day to day activities - being exposed to any form of stress could be a very different matter.

Someone mentioned an injection to stimulate the adrenal galands - that is what the test is, not to stimulate them to work better.

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Thanks pmrpro.. Im waiting to see my nurse specialist now, il keep you all informed what is said 🐱

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Hi all, my appointment with my specialist nurse was interesting. She has sent bloods off today and will ring me with the results tomorrow. We discussed the possibility of a flare, steroid withdrawal and as I am now borderline diabetic, she has ordered another Hba1C blood test. I mentioned the synacthen test and she said she would ask my consultant. She said that if my crp was significantly raised, it meant that the mycophenolate that I am currently on, isnt working. My consultant did discuss with me a while ago re possibly of going onto azathioprine and I had made my mind up not to start all over again with another immunosuppressant, but if I have to, then its going to happen. Funnily enough, the nurse ordered a Tpmt test today too.... Very proactive I think. Until tomorrow, I manage my current symptoms and stay on 0.5mg of prednisolone. 😞

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Further to my last post, about my visit to my nurse specialist, I am really annoyed, because she didnt ring me, when she sent my bloods away urgently and promised to get in touch today. I rang my surgery on the off chance that they might have received some info and nothing... It makes me feel distrust, let down, and angry. So I'm stuck over the weekend, feeling poorly an so downcast. I will be ringing the department on monday, to complain... Not that that will do any good, I've totally lost confidence in them. 😠

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Hi Suzycat,

I feel your pain. I have been doing well at 4mg. Knowing I had a stressful 3 days ahead of me, I went up to my original 16mg. Even the 16mg. did not give me enough pain relief to go walking in NYC. My husband had to renew his French passport at the consulate in NYC, the reason for the visit. Now that I am home, I dropped down to 8 mg, and will continue tapering again.

I have read in the US that some alternative medical doctors give patients an adrenal extract from an animal source to help people in your situation. In other words, it's an artificial replacement of the adrenal hormones; it eases transition when you completely stop prednisone .

But it is not mainstream medicine; I doubt you could find a doctor in England who would do that; I agree you need the test and follow up with an endocrinologist if at all possible.

So sorry you are going through this. Best....

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Thank you Christophene, thats very interesting. I get the feeling, that more research is done in the USA, I listen to a lot of Vasculitis Foundation stuff on you tube. I doubt if there are many consultants here that know about adrenal extracts from animals, and if they did, we are tied by lots of legislation in the UK as you probably already know. But anything would be better than taking steroids, even though steroids save lives and bring about dramatic improvements in vasculitis... Certainly did with me initially. To be honest, I dont think my body knows what its doing just now, firstly reacting to cessation of steroids, then having to function on 0.5mg as prescribed by my gp, then ive increased it myself to 1mg today, because my specialist nurse failed to ring me yesterday with urgently sent blood tests, and I cant stand feeling so ill for any longer... I 'toughed it out' for over 2 weeks and now I still have to wait. Hopefully, I'll get it sorted soon.

Thank you for your best wishes. 🐱

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Hi Suzycat,

My diagnosis was never clear to me. My symptoms were the symptoms of polymyositis rheumatica, but I tested positive for C-ANCA vasculitis, with no other inflammatory markers. I was put on 16mg. Prednisone and it worked like magic; for the first time in years, I had NO pain at all. The magic lasted about 7 months until I was advised to slowly taper.

I lost vision in my left eye for about 10 minutes during the tapering which suggested giant cell arteritis. Now I have no idea what I had or have. Also complicated by the fact that I had had a mosquito borne tropical virus 2 years prior to the onset of my symptoms in 2016. That virus is known to re-occur 2 years after the acute illness is over in people over 65.

Whatever it is, it seems treatment is the same: prednisone, methotrexate or a drug in that group, and Rituxamab infusions if the prior treatment is not sufficient. So I guess it doesn't matter. I do believe I have skin involvement on my arms and legs; lots of strange markings; My dermatologist is working on the many small skin cancers I have, (from years as a sun worshipper) , but she does not know much about vasculitis. My skin is very fragile from prednisone.

You may have heard that the US has virtually banned opiate pain killers except for the terminally ill and just 3 days after a major surgery. That makes everything worse. I was accepted into NJ medical marijuana program for the pain, but I cannot tolerate it except right before bed; it kills pain and anxiety, but there is no way I can function during the day with it.

All I know now is that 26 months after symptoms started, I have the same pain in my joints and muscles as I did when I first went to a rheumatologist. So, like you, I have no idea about my adrenal function. I feel that the prednisone does nothing now and I may as well stop it.

Very frustrating; tired of doctors, tests, and being a patient . At least I no longer feel extremely fatigued or like I have a virus. But the musculoskeletal pain and stiffness is worse than ever. Have decided to tough things out if I can and get off the merry-go-round of the health care system.

I hope you find relief soon. Keep us posted....

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Hi Christophene, you've been through the wars haven't you...poor you...I can well understand wanting to throw the towel in, as it were, in relation to having repeated tests, scans,bloods, appointments with different health professionals etc etc...I have felt like that a lot more, recently, in particular, because I thought that remssion was in the offing, already being established on immune suppressing medication, but I know that vasculitis can be unpredictable and I'm probably guilty of becoming blase over time. I've come to accept, that I will probably never regain my previous level of fitness, but have learnt to work within my limitations now, and that's a big step, I feel. I've read somewhere about a cannabis type oil, that you can rub on your muscles, for pain, but for the hell of me, can't remember the name of it. I think cannibas treatment has recently been legalised on prescription in the UK, so would be interesting to see how that pans out.

I'll post as soon as I hear anything.

Take Care 😺

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