Withdrawal or relapse?: Good morning! I am now... - Vasculitis UK

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Withdrawal or relapse?

Good morning!

I am now on 4mgs daily of Prednisolone - I couldn’t get below 7 mgs in August 2018 - and I feeling really drained, even after 8 hours sleep. I am still on 15 mgs Methotrexate weekly. Does withdrawal from Prednisolone produce similar symptoms to the original disease? Hope this makes sense because my brain feels like cotton wool!

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At this level your adrenal glands will have to start to produce a top-up of cortisol as the pred dose falls below the amount of corticosteroid your body requires to function properly. It is a complex feedback system involving several argans and hormones/substances and takes some time to get going and then to settle down to a smooth production line. Even after you stop taking pred altogether it is felt it can be up to a year or even more. One of the signs of adrenal insufficiency is fatigue - and brain fog and a few other things.

Using methotrexate MAY allow you to reduce the pred dose - but it has no effect on the returning adrenal function aspect. That still requires a slow reduction approach and patience. I don't know how long you have been on mtx, but when I tried mtx last year the fatigue was overwhelming, even without a change in pred dose. I developed a range of so-called pred side effects, weight gain and brain fog included, and also had muscle and joint pain.

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Thank you for replying.

I definitely have brain fog and fatigue. At this stage I still consider myself very lucky not to have suffered bad reactions to the meds. Hopefully I will be able to continue to reduce the Pred but am only too aware that a flare up could occur.

Best wishes

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Hi PMR, I recently had "routine blood work" done, the last being by a 2nd rheumatologist who I saw once. He was the one appalled that a PA at the first rheumatologist had put me on Methotrexate and didn't believe I had anything more than PMR, and I was pretty OK at the time So he urged me to continue with slow Pred. taper and contact him with any new developments. I've been hanging in at 4mg.

My labs were more or less ok, and he put to rest that I had C-ANCA vasculitis. Recently, my Primary Care ordered routine labs; his office called, but my bio-identical replacement gyn got the results also and called me in a panic. I missed her call, and she tried calling, including from her home. When I finally talked to her, she was genunely concerned that my red count was now out of wack and that my white count had shifted left showing bandemia. I know autoimmune diseases and prednisone can cause bandemia; but in other words, something has changed. My B12 is very high too.

My paternal grandmother died of leukemia at 73 ( I am 71) and my maternal grandmother had PMR and recovered to live for another 20 years. I will say that I don't have much appetite and don't drink water much b/c just not thirsty. I mentioned on the site that I fell down 13 hardwood steps 2 months ago and still have a thigh muscle hematoma lump that is slowly getting smaller.

Just to appease my gyn and myself, I do have an appt. with a hematologist. I am not asking you to give me a diagnosis, but what do you know about PMR in relation to bandemia and long term Prednisone use? If you know... I will say that I have had more bone and Back pain, but attributing that to a pre- existing severe scoliosis and the fall. Thanks.

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Do you know your white count figures? Pred itself increases the white count - mainly by increasing the neutrophils which increases the total, and the relative %s also change obviously. Autoimmune disorders themselves can also cause bandaemia. Methotrexate can also cause shifts though at what doses I'm not sure.

By far the best thing is to see the haematologist - because they are the experts in this field.

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I was not concerned about the white count b/c that is a function of Prednisone. But I have only been on 4mg. for a long time. I am off to a hematologist Monday; I can't help but thinking that the injury from falling down stairs shortly before having blood drawn may have something to do with it. I have a large hematoma lump in the left thigh muscle which , after 2+months shows no signs of getting smaller. I also injured my knees, and worsened a long pre-existing low back problem with ne which causes referred pain to my hips. Walking has become painful, the stairs are a problem; my legs won't alternate going up or down b/c the movement causes more pain than I want to tolerate. I still do stairs, but like a toddler, one step at a time.

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That should have been back problems with nerve involvement on numerous scans.

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Plan to return to return to rheumatologist after I see hematologist.

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This article in a previous VUK newsletter may help with information about prednisolone reduction page 8/9

drive.google.com/file/d/0Bw...

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Thank you for the article.

My consultant has said to reduce 1 mgs per day per month so I take 4 mgs per this month, 3 mgs daily next month and so on. Let’s see how that goes! I suppose the cushion is I’m still taking the Methotrexate

Thanks again and best wishes

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HAVE you had a synacthen test you need one. It is very important.

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Whats a synacthen test? I have now come off prednisolone. Took final dose last week. I am experiencing some symptoms such as stiffness in joints especially when I get up in the morning, and some aching and shooting pains in arms and legs.

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Hi

Can I ask, long did it take you to come off Pred and were you taking any other immune uppressants?

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I was diagnosed with MPA in May 2017 and put on 60 mg Pred and had 6 cycles of Cyclophosphamide. Rhen put on Azathioprine as well Reduced pred dose periodically down to 5 mg then from 5-0 over 16 weeks. Still on Azathioprine.

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Thank you for replying.

Hopefully I’ll be able to do the same.

Best wishes

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You will! Good Luck

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Hi. After 5 years on prednisolone I eventually managed to get off them in August last year. I too had a lot of trouble coming off them and suffered a vasculitis flare nearly 3 years ago as a result of trying to come off 5 mg, by reducing 1 mg per month. After that I carried on with 4 mg daily and then really gradually reduced to 1mg which I remained on for several months. Doctors smiled at me quizzically saying 1mg was a really small dose - why not come off it? Eventually I set about dropping that last mg off very gradually over a 6 week period - I felt really tired and wiped out but my markers were OK. After about 4 weeks I felt much better and came out of the tunnel! I think that must have been withdrawal. Maybe have your bloods tested just to make sure it's not a flare. Take your pred reduction really slowly though and be patient with withdrawal symptoms. It's worth the 'pain' - I feel much sharper and 'together' since coming off it. Good luck.

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Doctors and others do not understand how hard it is to come off a very small dose of Prednisone. In 9/16, I was started on 16mg for ,I should say, being positive with the PR3 antibody for C-ANCA vasculitis. However, over time, and consulting with some other specialists , that vacsulitis diagnosis has been disproved.

Or perhaps all this time on smaller and smaller doses of Prednisone got rid of it b/c no I am completely ANCA negative now. However, my symptoms were always typical of polymyositis rheumatica.

So now after 32 months on Prednisone, I have been holding at 4mg from 16 for a few months, the doctor leaving it up to me, and suggesting that if I felt well enough at 4mg., then that might be a good maintenance dose.

Had I not had a traumatic injury about 12 weeks ago, maybe I would be off by now. One day I recently cut that little 4mg tablet in half to 2mg. and took it. It didn't take long before I felt dreadful and exhausted. I didn't expect to feel unwell, either, but I did. They just don't get it, do they.? Just how hard it is, and how long it takes to get off this medication. Hopefully when other blood anomalies have shown up are figured out which could be the result of a violent fall down wooden steps, I will try to go lower; it's almost like a contest we have with ourselves.

And for those of us older folks, what difference does it make as long as bones are strong enough.????

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Hi - you got a bit technical there for me. I would say that to go from 4mg to 2 mg suddenly would have been too much for me too. When on those small doses (5 mg or less) I took a full month to drop each 0.5 mg : I know we are all different but it worked for me in the end.

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I may try your technique and see if I can get off. ????

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Hi. This is how I did it - dropping 1mg over 8 weeks.

Y = your current dose

N= your new dose (1mg less than your current dose)

Wk 1 NYYYYYY

Wk 2 NYYYYYN

Wk 3 YYYYNYY

Wk 4 YNYYNYN

Wk 5 YNYNNYN

Wk 6 NNYNNNN

Wk 7 YNNNNNY

Wk 8 NNNNNNY

Wk 9 NNNNNNN

My doctor thought this was a bit protracted but it worked for me. In the middle where you are alternating your old and new doses you have effectively dropped half a mg so you could stay doing that for a while if you prefer before starting to reduce the next half mg. Hope it helps.

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I would not drop the dosage drastically - little concerned at dropping from 4 mgs to 3 mgs in a month!

I hope your recovery is not as traumatic as your injury. Best wishes

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You're right; it's easy to think when you are in those low doses, it can't be that hard to go from 4 to 2, but it is. I am back at 4mg. My GP doesn't see any problem with staying at 4 mg. for life if need be. But I do want to get off in time.

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Thank you for your reply.

Bloods have come back as normal. As a matter it interest, were you taking any other immune suppressants at the time?

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Hi. I am still on 125 mg of azapriothine but, now I have been off pred for 6 months, the plan is to withdraw that gradually too. Hopefully this won't take another 5 years but you just can't tell.

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Hoping my withdrawal will be success but not optimistic the way I feel this morning! 😖

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Sorry; missed your last message. I was not taking any other immune suppressants. I was prescribed Azanthopine, but could not tolerate it( nausea and vomiting); then I was prescribed Methotrexate. I was able to manage methotrexate, but 2 out of my 3 doctors (2nd rheumatologist and a hematologist were very against it); I just stopped it and felt the same; no side effects from just stopping methotrexate. My rheumatologist was surprised that I felt nothing from just stopping, but was pleased.

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I hadn't been on it long but the only thing I felt by stopping mtx was BETTER!

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Hi all

Now seeing Prof Mason at The Hammersmith. Slower tapering if Prednisolone but ESR up on bloods at Hammersmith but my GP surgery told bloods normal - would they know???? Going to pick up copy results tomorrow.

I read the posts of what other people are going through with this condition (don’t like the work disease) and I feel very lucky although I am scared to say this.

Thank you all for responding x

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I really feel for you I have taken predizone most of my life.about 3 yr ago I started prednisone with antibiotic a and all the Dr at time as raise prednisone dose I would have 30 milligrams a day antibiotic for 3 years straight and she could keep me comfortable doctor and you came down and down 15 milligram today but I haven't been able to get down before that but I feel drained like you said you can't move your muscles hurt your body aches I also started infusions rituxan they seem to help some.but the min I try to reduce even 2 mg less of prednisone I can't function I wish I the best and if after the next go around of my infusion I will let u know or if anything help but I wish you the best .

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