Prednisone reduction

[Knox-kephart]

I am reducing my prednisone I take hydroxychloroquine sulfate 200 mg. I would like to stop taking hydroxychloroquine are there any side effects if I stop taking

[Loopydroopy]

Why do you want to stop?

[debbiemoll]

Hi

I think it may depend on every individual. I managed to give up prednisone for 2 years and am on it again mow. But I have been on hydroxychloroqunie (200mg) for a long time and when I came off it, my aches and pains were dreadful and I had to go on it again.

I am aiming to get off prednisone in the Spring but am staying with the hydroxy.

All best

[Tilcara]

Hi Knox-kephart,

I am on hydroxy 200 twice a day and about 14 months ago I decided like you that I wanted to come off prednisone as I felt the side effects far outweighed the benefits for me personally. It was a gradual process in conjunction with my consultant and since about earlier part of last year I've been off it. I do have the odd weeks where my joint aches are sometimes quite intense but I have been able to stomach that so far and I have my faith as well to keep me going.

Don't do anything drastic but make sure you liaise with your medical professionals. Good luck

[driven in reply to Tilcara]

Hi there. My consultant won't give me 400 MG hydroxy daily as he says at that level eye damage risk is too high so I take 200 one day and 400 next which he says is much safer. I wonder if you should raise risk level with your doc?

[Tilcara in reply to driven]

Many thanks driven, I have an appt a week away and will raise, but I am monitored and with regular eye tests and all seems well so far, but will make sure. Also checked out what is a normal dose of hydroxyl and can be 200 - 400 daily.

[vaderviper in reply to driven]

Could you let me know where your Dr. received the info he/she gave you about Plaquenil. I am a retired Neuro-Ohthalmologist and have not read anything in the literature that claims or shows alternating dosage is safer. I also have lupus and take 400mg daily (I too know all the potential side effects).......I prefer the risks as to the chronic problems with lupus. I examined many patients on Plaquenil and never were any on alternating dosages.

I would be very interested to find where he/she found her the information.

Thanks,

Dr. S. (in the USA)

[driven in reply to vaderviper]

Hi there

I will try to remember to ask but I only see the actual consultant from time to time as the NHS is very under resourced and the clinics heaving. I am more likely to see one of his team. I guess the key thing is that the average daily dose in this system is 300mg rather than 400mg. I think 400mg daily is considered to be the level that more eye problems are associated with.

[vaderviper in reply to driven]

Your supposition is almost correct. It used to be thought that a daily dose more than 6.5 mg/kg of body weight could lead to potential problems of the eye. It has now been shown that it is not the daily dose intake but rather depends on the age and how long you have been on the medication and it is now believed that it is not dependent on the daily dosage but rather the cumulative dosage.......over approximately 1,000 gms. It will take a little longer time to achieve the cumulative dosage by taking it the way you do now..........if that dosing works for you, then certainly stay with it.

Dr. S.

[sarahsch]

Please don't stop taking hydroxy. Speak to your Doctors if you are unhappy with your medication.

Hydroxy damps down our immune systems. Stopping will probably see a return of your symptoms & at worst your immune system could cause permanent damage often imperceivable until too late. It's been used for many many years with few longterm effects & in terms of Lupus type illnesses it's one of the safest drugs.

If you really want to stop you will need more frequent blood tests to monitor disease activity so speak to your doctor.

Prednisolone on the other hand can cause a number of problems. My understanding is that suddenly stopping tends to cause a flare & a long slow tapering off of the dose is required. Either way you need proper medical advice.

I don't mean to lecture. Just worried about you.

Sarah x

[PMRpro in reply to sarahsch]

The reason for the long slow tapering of pred is mainly to allow the adrenal glands to get back to normal function after being suppressed while taking it. Stopping taking pred suddenly can be life-threatening as it can induce an adrenal crisis which can be fatal if not recognised.

[Jolinny121 in reply to PMRpro]

I was on pred. For a number of yrs and when I titrated down slowly it was useless. Pred was there so adrenal cortex didn't need to produce and eventually atrophied. I have adrenal insufficency now and take replacement 6 times a day and am looking into getting approval for a pump like diabetic use. Prednisone is the debil!!!

[PMRpro in reply to Jolinny121]

It does not happen to everyone - and for those where it does happen it may have happened anyway, with or without having been on pred.

There are those who think pred is a devil - there are others like me for whom it is a lifesaver as it is the only option to manage the symptoms of my autoimmune disorder. The choice is pred or constant pain and a wheelchair - no contest.

[Marley]

I take both and my consultant would rather I reduce the hydroxy than the Prednisolone. He thinks steroids are far riskier. Always take medical advice!

[Jolinny121 in reply to Marley]

He would rather you reduce the one that's not the steroid though. Steroids are always worse!!! Try that first but slowly!!!

[Marley in reply to Jolinny121]

Sorry my post was unclear. I thought I had edited it. He wants me to reduce the steroid not the hydroxy. At the time I was only on 5mgs prednisolone but he was keen for me to get lower if possibly and staying on hydroxy might facilitate that. I was surprised myself. I just had a scare concerning my retina linked to long term hydroxy use. I had to cut it drastically. I've just been reviewed and Moorfields have changed their view and now think the changes to my retina are consistent with my age and not drug related. I think maybe hydroxy is a safer drug than I realised.

[ijeasike]

It will be better you consult ur dr about stopping ur prednisone. You will have to gradually reduce the doses. It is very dangerous to just stop. I tried it some weeks b4 Christmas and it was really bad i was lucky my mum was around because my condition was critical. I posted a message here during that time.

About the hydroxychloroquin it is one of the main lupus medications. You have to have your lupus under control then u and ur drs can consider reducing or stopping the meds.

I hate steroid bcos of the complications that come with it. The weight gain and all, but i have always been reminded at this forum, that being alife comes first every other thing will gradually fall into place. I was off steroid for 1yr and i lost weight but i was struggling. When i finally broke down the only thing my drs could give me subdue my inflammation and control my flareup was steroids. The drs had to convince me that my situation was very delicate and needed emergency treatment. I had to stay in hospital to get things under control.

So my dear dnt be in a hurry to stop any of your medication. Pls consult with ur drs first. Lupus is not an illness to take likely. Take care and God bless

Regards

Ijeasike xxxx

[maggielee]

As WS originally advised to reduce my hydroxychloroquine in winter months due to reduce uv and quite quickly a couple of weeks my legs were achy and flu like symptoms began. When doctor said to I crease it again took me no the to get back to where I was, not great but better for taking it. My specialist doc said may d I could try again in a few years, this time trying to reduce it more gradually (vs. Half right away) and see if OK. Very sun sensitive now, even on over cast days. Diffidently discuss with doc and monitor any changes. ML

[mark3600]

There are some important details about taking and stopping prednisolone,(and similar steroids) that have not been raised in the comment so far. I hope that when taking medical advice that the following important rules are provided for you or you are given a reason why...

1. When taking prednisolone on a regular basis this should, when possible, be taken as a morning only dose, this is to avoid the pituitary gland activity in relation to the adrenal gland function being suppressed by prednsiolone given later in the day or at night. If for an extended period this suppression can persist after prednisolone is discontinued with ill health, increased symptoms from an autoimmune or other condition and potentially life-threatening collapse. This period is usually only temporary but can be prolonged and may only become relevant with a future stress. If taking evening prednisolone do not suddenly change to morning only (see below) without advice.

2. When first started prednisolone is sometimes effective if taken in one single morning dose but often twice or more frequent doses are prescribed as they are sometimes needed to initiallly get control of the condition but with subsequent reductions in dose after a few days or weeks. These reductions should initially be in the doses NOT taken in the morning and should NOT be sudden ie reductions at weekly (or longer especially if on evening prednisolone for many months or years) intervals. Some doctors suggest initially moving the evening dose and adding it to the morning dose before starting to reduce the total daily dose by (then) slowly reducing the morning dose.

3. When the reducing total daily total dose reaches prednisolone 10mgms or less this is when there is most likely to be a break out of an autoimmune or other disorder and also the risk of a collapse - because the pituitary and adrenal gland have not returned to function after "suppression" by past doses of evening prednisolone.

4. When there is an operation, anaesthetic, illness or accident the pituitary and adrenal suppresed by current or past evening prednisolone may not respond to the stress, with collapse if extra cortisone/prednisolone, is not taken (or given by injection if urgent). Those taking prednisolone and similar medication (or who have taken them in the past) should carry a "Steroid Warning Card" to alert doctors and nurses (or/and you could carry a print out of the information in these notes).

This advice is based on extensive and very careful research, some done more than 25 years by myself and medical colleagues. The problems are explained by the similarity between the natural hormone, cortisone/cortisol (produced by the adrenal gland and controlled by the pituitary "master" gland in the head by another hormone ACTH). The adrenal gland is "reminded" each day by the pituitary putting out ACTH to respond to a low level of cortisol in blood in the evening/early night BUT if prednisolone is taken in the evening the evening dose of prednisolone confuses the pituitary gland which then does not instruct the adrenal to produce cortisone the next day... with potentially symptoms from too little cortisone or from increased activity of a less 'supresssed" immune system - which has a natural circadian pattern of activity and is more active in the morning, especially if not being suppressed by a combination of prednisolone and endogenous ("body-produced") cortisone.

It would be interesting if readers of this blog write in to state they were not aware of the importance of planning with their doctors or/and pharmacist on the time of day to take prednisolone and on the details of slow withdrawal. Failure to follow these guidelines may make it more likely that reductions in dose will not be as great as could be .... but in some conditions some people do need very long term doses of prednisolone and some doctors do prescribe more complex schedules of taking prednisolone throughout the day to simulate the natural bodies rhythm of cortisone production without interfering with the pituitary and adrenal activity . The merits of these more complex strategies are not yet established but the importance of careful planning for what time of day prednisolone is taken and how it is discontiued is established. If many patients are not being advised on this topic it is an indication that some of us should be doing more to educated doctors on this aspect of prescribing.

[Wenwen in reply to mark3600]

Hello Mark3600,

I'm tapering metrol from 16 to 12 mg in last two weeks and found it gets more difficulty than before. I have dermanomyositis and also take Cellcept.

I have the rashes and muscle weakness worsen. How do I know these are from steroids withdraw, or site effect of Cellcept (muscle weakness), or DM is not under control?

Thank you!

[Wenwen]

Tapering should be gradually. Reduce the dose at small amount every few weeks per your doctor

[mark3600]

It can be difficult to work out if symptoms are (1)due to the disorder being treated, (2) the side effects of steroids (prednisolone) or (3) due to withdrawal of prednisolone - which can relate to (4) decreased adrenal activity; especially if there has been long term taking of prednisolone and especially if taken late in the day/early in night - see my last post). Symptoms from withdrawal are less likely if each drop in dose is small, using 1 mgms tablets makes this easier, and intervals between reductions are less frequent and also if evening doses are decreased to nil first.

Keep a score of symptom severity and a note of all changes, including time of day doses taken, and take the records to any consultation.

If adrenal suppression from high doses or/and from evening doses is suspected there are laboratory tests of blood cortisone (cortisol) and adrenal stimulation (Synacthen injection) but these need expert medical input to order and interpret results. These may indicate that a small 5-10 mgms of prednisolone is needed long term to replace the failure of the body to make the essential normal amount of "cortisone (cortisol).

If possible set up a strategy of changing doses and relate these changes to symptoms from your records and better still with a chart or plot of symptom scores and then involve your GP or specialist in making a plan.

[Iadams]

Yes you need to wean yourself off both of them or it could make you sick

[Pooley66]

I have been off prednisone for about a year now. I don't know if I had any side effects as I have chronic pain and under active thyroid which both cripple me. Following a reply on here I am now looking into LND which could help with all 3 and could even reverse these illnesses. I just have to collect enough evidence to convince my GP (this could therefore take a while).