Lowering Prednisolone Levels

[AndrewT]

Dear All I guess,

There has recently been, a lot of, 'Talk' about Lowering Prednisolone levels, which I have read with interest. My level is Six Milligrams and, really is, the LOWEST that I can go- without a Serious risk of a 'Flare'. This is now, completely accepted, by my Doctor(s)/ Consultant(s). I am, in actual fact, at the absolute Lowest level of ALL my Drugs.

My point, is this, there could Very Well be a Level, below which you cannot 'Drop', without SERIOUS implications to your health. In an Ideal World, we would ALL be 'on' 5mg or less, of Prednisolone.....This is NOT that world. There are 'Steroid Sparing Agents' available....often needed at, fairly high levels- certainly initially- and Very Often NOT effective- plus you are Adding in 'yet another drug'! it IS 'up to you', of cause but I won't Bother thanks! Certainly, when your Prednisolone level is SIXTY milligrams, it is necessary to lower it. However, when your level is down to Ten milligrams, then maybe you need to stay there for a time. Thereafter reduce, the level, VERY slowly- perhaps 1mg every three months. Yes it WILL take time, and NO you may not achieve your 'Goal' (consider this though, is this your Personal Goal, or the Doctors?)

Are you sure, have you actually Spoken to your Consultant (Not the Registrar, or the Team Member but Your Actual Consultant?) Explain 'everything', including your Feelings/ Concerns, and DON'T be 'afraid' to ask, or indeed tell regarding your Condition.

I advised someone on this Forum recently, who had had an Appointment changed, after waiting three months. I advised him/her to contact, the Consultant, directly in case (s)he had no Idea, about this change. So it might, be worth your while, contacting him/ her directly. (remember that legally, if you address your letter to a 'named' person, then only they- or a secretary- can open the letter. IE Dear Dr Smith means that (s)he has to receive it.)

I hope that this has been, at least, some help. Most, if not ALL, Doctors/ Consultants DO care and, actually are, trying to Help us. That this doesn't Always work, may NOT be their fault.

AndrewT

[Sima1952]

Hi Andrew T, how are things going with you, it's been a long time since we last had a "chat" but l have always found your advice/ information very constructive. Am l right in that you go to Cl14 at Addenbrooke's, if you do, do you see Miss Damato?

Sally

[AndrewT in reply to Sima1952]

Dear Sally,

As you say 'Long time no hear'...Yes I'm fairly well- at least as 'well' as I can be. Much, MUCH better since that f..king HOT weather ended, I really suffered in that....Now I can complain about the COLD weather- though I Won't!

I'm actually under Clinic 12, at Addenbrookes, so I don't know Miss Damato unfortunately. My Main Consultant is Dr David Jane, who is also a 'Consultant' to Vasculitis UK- our Sister Organisation. The name of the lady, that I do see, I VERY embarrassingly NEVER seem to remember....She has only told me about 'Five Billion Times'!

I have also changed my GP, about six- or seven- months ago. My new GP is Dr Tabbone and she is 'Lovely', I can now, having finally got 'registered', order Repeat Prescription 'On Line'. They are then delivered to my local Pharmacy, in all an Excellent arrangement.

I have a 'Nasty' skin Condition, affecting my left Thumb/ Fore Finger and adjoining palm area- it IS responding to steroid cream, slowly.....My Athletes Foot is still there....And so on. I AM alive though, so I can't really complain....Me Complain? NEVER!

How are you Sally? Well I hope. Are you 'Better' since that Stiflingly HOT weather ended?

It is Armistice Day, on Sunday, One Hundred Years since we Promised NOT to Fight, any more..….I'm NOT going to Debate, that one, suffice to say I WILL be attending Church- I normally do anyway- and offering Prayers. I have bought a Special Poppy, direct from The British Legion- to whom I also made a Direct Donation. Please DO join me, indeed us all, in praying for Peace or, at least, an accord throughout the World.

Hope to hear from you soon Sally.

Kindest Wishes

AndrewT

[Sima1952 in reply to AndrewT]

Hi Andrew,

Like you that HOT weather was just to much, l didn't even go outside in the back garden and only went into town a couple of times; had all my groceries delivered. Vas' wise jogging along o.k. except my immunoglobin is low and have had to reduce the MMF tabs l'm on. You mentioned you have Althetes Foot, l don't know if fungal nail infectiions are related but l had it on every single toe nail; pre-Vas' days. Anyway, my reason for mentioning this is l went to my GP about something else and happened to mention it, and cut a long story short, l was put on a tablet which l had to take every day for a year but it cleared it up; l wonder whether there is something like this for A.F.

My main health issue at the moment is pain, with a capital P - l broke my 4th Lumbar vertebra in 2016 - vertical not horizontal. The Consultansts are unable to fix it, which means it is now semi-stable as it'll never heal compeletly, and all l have to do is do something silly - like hit a brick wall - which sets the pain off again.

Having said all that l still run my Beaver Scouty Colony in the village where l lived for 47 yrs and yes l shall be at Remembrance Parade on Sunday along with all the other youth organisations.

Speak to you soon Andrew.

Sally

[AndrewT in reply to Sima1952]

Dear Sally,

Sorry to hear, about your back....OUCH! Yes Athletes Foot IS 'Connected', to the Immune-suppression- that I'm on. Yes there are tablets, which can take a year AND, my Consultants/ Doctors DON'T recommend them, for me. As regards Fungal Nail Infections, again yes but I seem, so far anyway, to be keeping things 'In Check'- with my usual routines.

Yes the Cooler weather, does also, cause Problems but of the 'Achy Joint'- or Sore Muscle Type- rather than the Tummy/ Gut/ Constipation Type, the hot weather brings. 'Out of the Frying Pan, and into The Fire!', as it were....Oh well, mustn't Complain.

I'm going to Church, on Armistice Day. The normal Service, is starting early- 9:45, instead of 10, so we can finish in time for The Memorial Service. I will be Praying, for a World Accord (or Understanding), rather than World Peace a Far More Likely- indeed achievable- goal.

Anyway I'm off to Bed Sally.

Kindest Wishes, to you And your family.

AndrewT

[Tbrz]

Thanks AndrewT for this insight to lowering pred as I am facing this at the moment. I had been on very high dosage and have been reducing down to 10mg and under. Unfortunately, even on 10mg and certainly anything under I have been feeling very nauseous, achy, etc., it has not been very pleasant and this has been on a slow taper. On speaking with the consultant they have advised to go up slightly again and try to taper again, but slower, in a few months. I agree that there is pressure to come off prep and certainly I have a lot of horrible symptoms such as insomnia, sweats, moon face, wait gain, steroid induced diabetes, do yes I do get why I need to come off, but it is very difficult that you don’t, well I don’t, which is the lesser of two evils!

What I am trying to say is it is very useful to see stories like yours as it helps when you are going through the same process, so can see that you are not the only one experiencing symptoms - so thanks.

Also I agree with you about the hot summer i found it very difficult, made me feel nauseous, another thing, lost even more sleep, so I rejoiced when the weather turned cold, although that brings another set of problems such as need to wear socks and proper shoes which kill my feet and make them even more painful to stand/ walk on - oh isn’t this disease lovely!!!!!

[Keithtim10]

Hi Andrew its interesting your post as i have ANCA Vasculitis diagnosed some three yaers ago and has left me with Stage 3/4 CKD.After having a plasma exchange when originally daignosed and then Cyclophos for 6 months then taking Azothioprine but taking Prednisolone all the time at different levels.Over the last 18 to 24 months i have had Rituximab due to Flare up but still taking the steroids.I had been on 5mg for a while then on my last visit to my consultant he has stopped them and i am due back to see him end of november.I do take your points and i do feel some anxiety as to what my bloods will show on my next visit because i obviously do not want another flare up at the same time trying to look after my kidneys through diet and lifestyle.I do have full confidence in my consultant and his team who have looked after me brilliantly and are first class in the way they do it.But for obvious reasons with the road i have been on and still on anxiety does creep in.

[AndrewT in reply to Keithtim10]

Dear Keith,

I have ANCA Vasculitis to, actually about five 'overlapping strains'. Prior to my Kidney Transplant, in July 2013, I was on Azathioprine myself, along with Prednisolone, and other drugs. I am now on Tacrolimus, along with Prednisolone, and other drugs. If Your Consultant is, as 'Lovely' (not your phrase, sorry) as you say, can you not just Talk, to Him/Her? I know that I can, do this, with my Consultant- Dr Andi, at Ipswich Hospital, he IS a perfect gentleman. Although I have Opted, to remain, under Addenbrookes' Hospital Cambridge, for Annual Check Ups, Dr Andi IS knowledgeable, as regards my Condition. As I said, in my 'Post', I am on the Minimum Drug Level, for my Condition. I would definitely speak, to your Consultant.

Sending you my, very best, wishes.

AndrewT

[Webbyj]

Hi all, I am on 5mh of prednisolone and desperately want to come down a bit more. I have been told that my eye pressure is high at a level of 26. (Normal being up to 22). I am now awaiting an appointment with the glaucoma clinic in January. Has anyone else experience this? I have just had my Aza lowered as I had a bcc (basal cell carcinoma) on my lower eyelid and it’s growth was caused by the meds and my suppressed immune system. I am scared about the glaucoma risk. I would be grateful to hear of any others experience or thoughts on this.

[AndrewT in reply to Webbyj]

Dear Webbyj,

Yes I do know about Glaucoma, but only really, because my Father has it. A reading of 26 ISN'T that high, especially if it is a 'One Off', OK if the readings remain 25+ then there, might be, some cause for concern. However if your Pressure reached 50+, on a regular basis, then there WOULD be action! I had one reading, in the Twenties, instead of the usual 15 & 18, and no-one was 'Bothered' at all. So basically Webby, unless 'They' suggest a Problem, DON'T make one! Sorry to be Apparently 'Telling You Off', it DOES sound like that, doesn't it.....Please Forgive, the way, this sounds. I just don't want you 'Latching Onto', one result and thinking the worst.

Once again, sorry to be so 'Brutally' blunt. ( I feel awful now)

Kindest wishes (honestly)

AndrewT

[ZiggyDiego in reply to Webbyj]

I’ve had prednisolone induced glaucoma for two years and have dorzalamide eye drops three times a day to keep it under control. Usually my pressures are around 18-22 which ok apparently. They didn’t like it when they got nearer 30. I knew something was wrong with my eyesight at that time. I would suggest that any time you are worried about your vision you get checked at the eye clinic: I have GPA and it has affected my eyes every flare up, so I’m very wary of any changes or pain. Hope you get sorted.

[Webbyj in reply to ZiggyDiego]

Thank you for your reply I will speak to my consultant again asnir does worry me.

[Webbyj]

Thank you Andrew for your reply. I don’t have a problem with bluntness! I have an appointment in January so will see what happens then.

[vargus57]

hi i have bin on 6mg for for 2 month now down from 7 and half and im not going any lower, i havent had flare ups for couple of yr now im working and feeling well, so many people keep reducing and end up ill again!

[Sima1952]

Hi Andrew,

Hope the day goes o.k. tomorrow, l'm not sure whether l shall be able to make it due to the PAIN which is giving me very bad nights, what with having to take pain killers around 04.00hrs, even though l'm wearing a Mophine patch as well. This week 've been waking up totally shattered and usually have to go back to bed after l've fed my dogs and cat :-). If and it's a very big if, l awake and feel o.k. l'll get to one of them, either in the town or in the village.

Sally

[Webbyj]

Hi Andrew, I have read your comment with interest as I want my prednisolone reduced. I am also on Aza and don’t see the need to be on both. The problem is that there are awful side effects for some of us on pred. I am having problems now with eye pressure and am worried about glaucoma. It has been commented by another member that my pressure is not that high at a level of 25 but that is incorrect. It is high! They have put this down to the steroids (I am on only 5 mg which my GP says is still enough to cause other issues). The point I am making is we ALL need to take our concerns to our consultants and reduce all meds as much as possible without causing a flare.