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Sjogrens Topics => Living With Sjogren's => Topic started by: cari on July 01, 2015, 02:14:23 PM

Title: Prednisolone
Post by: cari on July 01, 2015, 02:14:23 PM
When did you start taking Prednisone?  It's been three months since I started taking 400mg of hydroxy.  and today I'm in pain as I have been every day for the last two years.  I'm so fed up with being in pain but I don't know how Prednisone works.  My rheumatologist gave me a prescription for a month but I'm not sure how to take it or what kind of effects it has.  I've read that it has pretty bad side effects and I don't know how long the effect lasts. The doctor gave me a shot for inflammation at the end of April and the effects felt like I had sand in my joints.  I didn't feel much better although five days later the inflammation had gone down somewhat but I was still in pain, still felt fatigued just wasn't writhing about.

Title: Re: Prednisone
Post by: Sleepy In Seattle on July 01, 2015, 03:44:55 PM
I'm sorry you're feeling cruddy... :-(

Please get in touch with your doctor and make sure you know exactly how to take the prednisone...it can be very effective getting a disease flare under control, but it's also potentially very dangerous if you take it wrong.

Some people don't tolerate it well, but many do, for short periods of time. Most of the serious side-effects come from taking it long-term.

I hope you get some relief soon!!!
Title: Re: Prednisone
Post by: Carolina on July 01, 2015, 07:08:16 PM
Hydroxy is probably Plaquenil, NOT Prednisone.

We each respond very individually to medications, cari, so it's hard to know what will work for you.

I don't take Plaquenil at all. 

Hydroxychloroquine (Plaquenil)

https://www.rheumatology.org/Practice/Clinical/Patients/Medications/Hydroxychloroquine_(Plaquenil)/

I DO take a low dose of Medrol (methylprednisolone) which is like Prednisone.

If it's going to work, Prednisone works right away.

https://en.wikipedia.org/wiki/Methylprednisolone

I'm sorry you're having such a difficult time.

Hugs,  Elaine
Title: Re: Prednisone
Post by: Tharrell on July 01, 2015, 07:49:49 PM
I agree with Caroline, it's plaquenil you are talking about since the dosage is 400 mg. you take it either as once a day preferable after a meal or you can split the dose 200 mg twice. I take mine as one dose after dinner. It can take up to 6 month to take effect. I am also on 2.5 mg prednose daily and have been since February for the joint pain.
Hope this helps the confusion.
Title: Re: Prednisone
Post by: rnathans on July 01, 2015, 08:11:24 PM
I think the OP is saying she has been on plaquenil for 3 months and was given a script for a month of prednisone but does not know how to take it.

So Cari, if this is correct do not start the prednisone until your doctor explains how to take it and answers your questions about what to expect while on it as well as longer term as a result of taking prednisone.
Title: Re: Prednisone
Post by: cari on July 02, 2015, 04:29:37 AM
I think the OP is saying she has been on plaquenil for 3 months and was given a script for a month of prednisone but does not know how to take it.

So Cari, if this is correct do not start the prednisone until your doctor explains how to take it and answers your questions about what to expect while on it as well as longer term as a result of taking prednisone.

Yes this is what I meant.  I've been on hydroxy. (we don't have plaquenil in the uk) for three months. I'm still in pain.  The rheumatologist gave me a prescription for a month of prednisone.  I'm so fed up with being in pain that I was thinking of taking it.  I'm concerned that it will do more harm than good and wondered how others had fared on it.  I'm also wondering if I'm not bad enough to take it because I am not on any other pain medication and still feel awful but am not writhing about in agony.  The pain is constant and unremitting but the prednisone was requested by me for when I go to Thailand in case I have a really bad flare and need it as a last resort.

I've looked up the side effects and they are frightening.  So I'm wondering if I should take it before I go in order to be able to have some kind of quality of life (without pain) or to keep struggling, waiting for the hydroxy. to kick in and leave the prednisone for a really bad flare.

Title: Re: Prednisone
Post by: Jasper on July 02, 2015, 07:34:35 AM
Cari ..... The Prednisone prescription should have very specific directions on the bottle for exactly how to take it. It should state exactly how many tablets to take each day and for how many days. You cannot just start taking any old dose and then abruptly stop it after a month.

If you start taking Prednisone and then abruptly stop taking it, you run the risk of adrenal failure. It has to be tapered over several days.

http://www.medicinenet.com/steroid_withdrawal/article.htm

I have a Prednison prescription to take for flares. These are the instructions:
Prednisone 5 mg
Take 4 tablets daily for 5 days
Then, take 3 tablets daily for 5 days
Then, take 2 tablets daily for 5 days
Then, take 1 tablet daily for 5 days
Then Stop.

BTW, most of the side effects (weight gain, fluid retention, diabetes, etc.) don't occur when Prednison is taken for short periods of time, like for a flare. They occur when one is on long term therapy. So, for short term treatment, like for flares, the main concern is that the Prednison is tapered properly.
Title: Re: Prednisone
Post by: cari on July 02, 2015, 07:57:39 AM
Cari ..... The Prednisone prescription should have very specific directions on the bottle for exactly how to take it. It should state exactly how many tablets to take each day and for how many days. You cannot just start taking any old dose and then abruptly stop it after a month.

If you start taking Prednisone and then abruptly stop taking it, you run the risk of adrenal failure. It has to be tapered over several days.

http://www.medicinenet.com/steroid_withdrawal/article.htm

I have a Prednison prescription to take for flares. These are the instructions:
Prednisone 5 mg
Take 4 tablets daily for 5 days
Then, take 3 tablets daily for 5 days
Then, take 2 tablets daily for 5 days
Then, take 1 tablet daily for 5 days
Then Stop.

BTW, most of the side effects (weight gain, fluid retention, diabetes, etc.) don't occur when Prednison is taken for short periods of time, like for a flare. They occur when one is on long term therapy. So, for short term treatment, like for flares, the main concern is that the Prednison is tapered properly.

I understand it needs to be tapered.

What is says on the box is: 28 x prednisolone 5mg five tabs once daily.  He's given me 6 boxes.
http://www.nhs.uk/medicine-guides/pages/medicineoverview.aspx?condition=Inflammatory%20disease&medicine=prednisolone&preparation=Prednisolone%205mg%20tablets

It doesn't say if I take the medication all at once or spread over the day.  It doesn't say to taper.  It says Do not stop taking this medication unless your doctor tells you to stop  so it looks like continuous medication. 

On the leaflet, how to take it says the usual dose is 20-80mg daily as required for control followed by gradual reduction to a maintenance dose of 5 to 20 mg daily.

The side effects are literally insane, triggering suicidal thought, mania and insomnia.  They are really frightening including high blood pressure and congestive heart failure. 


Title: Re: Prednisone
Post by: Carolina on July 02, 2015, 08:05:33 AM
Can you call the doctor and ask him/her how to take the RX given to you?

That would be the best idea.

Prednisone will work amazingly.  Perhaps you are to take 5 mg a day, which is a low dose.   If it doesn't work well within the first two or three days, you can reduce the dose slowly and stop.  5 mg a day is a low dose, IMHO.  But it is the MOST I've ever taken for the pain of inflammation and it works VERY WELL for me. I take the equivalent of about 3.5 mg a day.  And I have almost no pain.  Very manageable. I also take Aleve and Cymbalta for pain.

Hugs,  Elaine
Title: Re: Prednisone
Post by: cari on July 02, 2015, 08:13:25 AM
Can you call the doctor and ask him/her how to take the RX given to you?

That would be the best idea.

Prednisone will work amazingly.  Perhaps you are to take 5 mg a day, which is a low dose.   If it doesn't work well within the first two or three days, you can reduce the dose slowly and stop.  5 mg a day is a low dose, IMHO.  But it is the MOST I've ever taken for the pain of inflammation and it works VERY WELL for me. I take the equivalent of about 3.5 mg a day.  And I have almost no pain.  Very manageable. I also take Aleve and Cymbalta for pain.

Hugs,  Elaine


The dose on my medication is 25mg a day.  It's a good idea to phone my rheumatologist and have a chat with him about it as he didn't tell me how to take it.  I just asked for something to help in case I had a really bad flare whilst in thailand as a stop gap in an emergency so he just wrote out a prescription.  I've only just looked at it now.

How long have you been on it and have you had any side effects like anxiety, depression, nervousness or weight gain?  I have a history of depression so I'm very wary about this.  Perhaps the best thing to do is try it for a week, see if it has any effect then taper off it if it doesn't work or if it has a negative effect eg anxiety. 

A day without pain would be such a blessing I think I'd cry from relief.
Title: Re: Prednisone
Post by: Sleepy In Seattle on July 02, 2015, 08:58:22 AM
It seems irresponsible for a doctor to give such vague instructions about taking such a serious medication...are you happy with your doc? Maybe this is just a miscommunication, but please make sure you have all the information you need and really understand what s/he is giving you. Don't ever feel bad about asking questions! :-)

5mg/day and under (of prednisone - prednisolone, while spelled in a similar way, DOES have different dosages, so be sure what you have!)  - anyway, 5mg or less of prednisone a day is considered a "biologic" dose - i.e., the amount most people naturally produce per day anyway, so it usually does not have bad side effects.

Short bursts are also usually not a huge problem -a few days at 20mg, then 10, then 5, then 2, then off.

Some people react badly, but that is typically (though not always) on longer-term situations. Most people can take short courses of it and benefit greatly without bad side effects. Most of us can take low doses (under 5mg/day) for longer periods of time and be fine with that, too. It CAN be very helpful, but should not be taken lightly.

The psychosis side effects are very rare. On higher doses sometimes people feel crabby or irritable, but the really serious problems are unlikely unless you are taking a lot of it (i.e., over 60mg/day) for several weeks at a time.

For some of us, it's really amazing how well it works - makes me feel like a healthy 20-year-old (I'm 47). I wish it didn't have so many serious long-term side effects - if it didn't, all my health problems would be solved! :-P But I don't want to end up with Cushings or have my bones dissolve, so I only take it if I absolutely have to.
Title: Re: Prednisone
Post by: warmwaters on July 02, 2015, 09:00:05 AM
And just to be clear - those instructions are going to vary by individual. I also use prednisone to break a flare, but using a different pattern than the one described by Jasper.

It seems to me that it may be worth trying the prednisone now, while you have access to your rheumatologist.  You will find out
1) To what degree it helps you.  BTW, it reduces the inflammation and suppresses the immune system. It is not a pain reliever - though by suppressing the inflammation, it does help with the pain.

2) To what degree you have any short term side effects. For example, I get very wired and irritable after several days of prednisone.  Not everyone does, but it's good to know what your side effects are.

3) Gives you a chance to talk with your rheumy about adjusting the dosing, depending on your reactions.

I assume you have come up with a way of continuing your medical care while in Thailand?  Or have a way of contacting your current rheumy, if you don't plan to use Thai doctors?

Best of luck.

 
Cari ..... The Prednisone prescription should have very specific directions on the bottle for exactly how to take it. It should state exactly how many tablets to take each day and for how many days. You cannot just start taking any old dose and then abruptly stop it after a month.

If you start taking Prednisone and then abruptly stop taking it, you run the risk of adrenal failure. It has to be tapered over several days.

http://www.medicinenet.com/steroid_withdrawal/article.htm

I have a Prednison prescription to take for flares. These are the instructions:
Prednisone 5 mg
Take 4 tablets daily for 5 days
Then, take 3 tablets daily for 5 days
Then, take 2 tablets daily for 5 days
Then, take 1 tablet daily for 5 days
Then Stop.

BTW, most of the side effects (weight gain, fluid retention, diabetes, etc.) don't occur when Prednison is taken for short periods of time, like for a flare. They occur when one is on long term therapy. So, for short term treatment, like for flares, the main concern is that the Prednison is tapered properly.
Title: Re: Prednisone
Post by: Jasper on July 02, 2015, 09:14:39 AM
Cari ..... I just thought I would mention that I was on high dose Prednisone for almost a year in 1994 when I had Systemic Vasculitis. I was on 70 mg a day for several months.

I did develop weight gain. I used to be very thin, 118 pounds and 5 feet 7 inches tall, actually underweight. I gained 25 pounds the first year. While I had never had a weight problem prior to taking  Prednisone, I have had a weight problem ever since taking Prednisone. Being on the Prednisone for as long as I was, seemed to change my entire metabolism. I continued to gain weight even after stopping the Prednisone. While it used to be very easy for me to drop a few pounds, now it is extremely difficult to drop any weight.

I also had a moon face and a buffalo hump. The moon face and buffalo hump disappeared after I stopped the Prednisone.

I did not have any Anxiety or Depression from the Prednisone. I did have a lot of energy while taking the Prednisone, but I did not have nervousness. I have a history of Depression (1983 and 2011) but the Prednisone did not cause any Depression.

I have noticed that I have difficulty falling asleep when I am on the lower dose Prednisone for the flares.

Also, I agree with Warmwaters. The Prednisone flare tapers are individual. I was only posting my instructions so you can see how detailed they are (not that you or anyone else should be using my instructions). In fact, my original taper had different instructions and was for a lower dosage and shorter length of time. It did not work due to the low dosage, so my Rheumatologist changed the order to start with 20 mg a day and taper from there.
Title: Re: Prednisone
Post by: Sweetcheex76 on July 02, 2015, 09:48:23 AM
Hi Cari-

I saw you mentioned you have a history of depression so you have every right to be concerned. Prednisone can bring on anxiety and depression. You may want to mention it to your doctor but usually they just say something like, "it's a low dose so it probably won't affect you", but it can.

I suffer from depression and over the years, before my Sjogrens diagnosis, I've taken several prednisone packs for sinus infections, etc. About 1/3 of the time, I got depressed. A few months ago I was in the middle of the worst flare ever and my doctor prescribed prednisone. The depression and anxiety came on so strongly, I was frightened. I've never felt that depressed before. My doctor had me stop taking it with one day left. I will never take it again.

I guess my point is, everyone is different. Try it and it could be very beneficial and you could have no issues. But, if you feel anxiety or depression, call your doctor right away. Good luck to you and hopefully, it will make you feel much better.
Title: Re: Prednisone
Post by: rnathans on July 02, 2015, 11:25:46 AM
If you are in fact being told to take 25 mg a day for 28 days that does seem to be quite a high dose to start out with. For a few days maybe and then taper or a steady low dose for a month but this just seems wrong. And 25 mg a day will likely negatively impact your mood. I get 20 mg of IV decadron ( not exactly the same drug) one day a month with my IV cytoxan and I have a few really rough days. I or my husband have to constantly remind me that it will pass in a few days. I HATE how steroids make me feel. At 25 mg a day you may very well have trouble sleeping too. I know lack of sleep is an immediate trigger for me to feel sad and teary.
Title: Re: Prednisone
Post by: irish on July 02, 2015, 02:16:30 PM
Have you checked the directions on each box??? Each box may have a set of directions and the boxes may be numbered as 1 through 5. This may be a long burst and taper. If you don't understand then please call the doctor.

Yes, prednisone can have some side effects and you should call the doctor if you have anything that bothers you. Tapering down too fast can give a person some issues, but we are all different and you will have to keep track of how you feel and check with the doctor if you feel the need.

Also, the pharmacist should have talked about the prednisone with you also to make the directions clear. You can call them and talk to the one who filled the prescription. Check the label and you should see the initials or name of the pharmacist. Good luck. Irish
Title: Re: Prednisone
Post by: cccourt1942 on July 02, 2015, 03:20:08 PM
I have received Rx instructions written incorrectly or incompletely more than once.  It happens very seldom...but it DOES/CAN happen.  It may have been an honest mistake.  There are enough responses to verify you need more info...and that must have been written incompletely or incorrectly.
c3
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:21:07 PM
It seems irresponsible for a doctor to give such vague instructions about taking such a serious medication...are you happy with your doc? Maybe this is just a miscommunication, but please make sure you have all the information you need and really understand what s/he is giving you. Don't ever feel bad about asking questions! :-)

5mg/day and under (of prednisone - prednisolone, while spelled in a similar way, DOES have different dosages, so be sure what you have!)  - anyway, 5mg or less of prednisone a day is considered a "biologic" dose - i.e., the amount most people naturally produce per day anyway, so it usually does not have bad side effects.

Short bursts are also usually not a huge problem -a few days at 20mg, then 10, then 5, then 2, then off.

Some people react badly, but that is typically (though not always) on longer-term situations. Most people can take short courses of it and benefit greatly without bad side effects. Most of us can take low doses (under 5mg/day) for longer periods of time and be fine with that, too. It CAN be very helpful, but should not be taken lightly.

The psychosis side effects are very rare. On higher doses sometimes people feel crabby or irritable, but the really serious problems are unlikely unless you are taking a lot of it (i.e., over 60mg/day) for several weeks at a time.

For some of us, it's really amazing how well it works - makes me feel like a healthy 20-year-old (I'm 47). I wish it didn't have so many serious long-term side effects - if it didn't, all my health problems would be solved! :-P But I don't want to end up with Cushings or have my bones dissolve, so I only take it if I absolutely have to.

The person who prescribed was my initial rheumatologist (the one who originally diagnosed me).  I'm now with the Sjogren's clinic.  No he didn't explain how to use the medication and it just says on every box, take five once a day.  There is no taper written on the box.  I have Prednisolone 5mg pills.  I understand the side effects are rare but am sensitive to medication and don't want to start hearing voices ;)  Thanks :)
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:25:51 PM
And just to be clear - those instructions are going to vary by individual. I also use prednisone to break a flare, but using a different pattern than the one described by Jasper.

It seems to me that it may be worth trying the prednisone now, while you have access to your rheumatologist.  You will find out
1) To what degree it helps you.  BTW, it reduces the inflammation and suppresses the immune system. It is not a pain reliever - though by suppressing the inflammation, it does help with the pain.

2) To what degree you have any short term side effects. For example, I get very wired and irritable after several days of prednisone.  Not everyone does, but it's good to know what your side effects are.

3) Gives you a chance to talk with your rheumy about adjusting the dosing, depending on your reactions.

I assume you have come up with a way of continuing your medical care while in Thailand?  Or have a way of contacting your current rheumy, if you don't plan to use Thai doctors?

Best of luck.



I spoke to the rheumatologist before I took the Thailand internship.  He said that this condition is very common in South east asia and doctors are used to treating it.  I don't have a way of contacting my rheumatologist (we can't directly contact our rheumatologist in the UK so I can't just phone to speak to him) except perhaps through his admin.  I will discuss this with him before I leave.  I'm also concerned that this won't help with the pain.  Is so there's no point me taking it.  My inflammation is no where near as bad as when I had the cortisone shot in April.  Doesn't seem worth taking it for the pain then.  Thanks.
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:28:43 PM
Cari ..... I just thought I would mention that I was on high dose Prednisone for almost a year in 1994 when I had Systemic Vasculitis. I was on 70 mg a day for several months.

I did develop weight gain. I used to be very thin, 118 pounds and 5 feet 7 inches tall, actually underweight. I gained 25 pounds the first year. While I had never had a weight problem prior to taking  Prednisone, I have had a weight problem ever since taking Prednisone. Being on the Prednisone for as long as I was, seemed to change my entire metabolism. I continued to gain weight even after stopping the Prednisone. While it used to be very easy for me to drop a few pounds, now it is extremely difficult to drop any weight.

I also had a moon face and a buffalo hump. The moon face and buffalo hump disappeared after I stopped the Prednisone.

I did not have any Anxiety or Depression from the Prednisone. I did have a lot of energy while taking the Prednisone, but I did not have nervousness. I have a history of Depression (1983 and 2011) but the Prednisone did not cause any Depression.

I have noticed that I have difficulty falling asleep when I am on the lower dose Prednisone for the flares.

Also, I agree with Warmwaters. The Prednisone flare tapers are individual. I was only posting my instructions so you can see how detailed they are (not that you or anyone else should be using my instructions). In fact, my original taper had different instructions and was for a lower dosage and shorter length of time. It did not work due to the low dosage, so my Rheumatologist changed the order to start with 20 mg a day and taper from there.

I'm struggling with weight gain at the moment which may be due to hormonal problems so really don't want to put on any more weight.  Not from an aesthetic perspective but from a health perspective.  It puts more weight on my joints adding to the pain and is really unhealthy when my health should be my priority right now.  I also experienced weight gain exactly as you describe after taking anti depressents before, so really dont' want to go back to all that.  Thanks for letting me know about the side effects.
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:30:37 PM
Hi Cari-

I saw you mentioned you have a history of depression so you have every right to be concerned. Prednisone can bring on anxiety and depression. You may want to mention it to your doctor but usually they just say something like, "it's a low dose so it probably won't affect you", but it can.

I suffer from depression and over the years, before my Sjogrens diagnosis, I've taken several prednisone packs for sinus infections, etc. About 1/3 of the time, I got depressed. A few months ago I was in the middle of the worst flare ever and my doctor prescribed prednisone. The depression and anxiety came on so strongly, I was frightened. I've never felt that depressed before. My doctor had me stop taking it with one day left. I will never take it again.

I guess my point is, everyone is different. Try it and it could be very beneficial and you could have no issues. But, if you feel anxiety or depression, call your doctor right away. Good luck to you and hopefully, it will make you feel much better.

This is what I'm really worried about.  I already suffer from anxiety and have suffered from depression in the past.  I'm okay with hydroxy. because it doesn't have those side effects.  I had a shot of cortisone to bring down inflammation in April and am currently feeling down so wonder if it's anything to do with that. 
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:31:56 PM
If you are in fact being told to take 25 mg a day for 28 days that does seem to be quite a high dose to start out with. For a few days maybe and then taper or a steady low dose for a month but this just seems wrong. And 25 mg a day will likely negatively impact your mood. I get 20 mg of IV decadron ( not exactly the same drug) one day a month with my IV cytoxan and I have a few really rough days. I or my husband have to constantly remind me that it will pass in a few days. I HATE how steroids make me feel. At 25 mg a day you may very well have trouble sleeping too. I know lack of sleep is an immediate trigger for me to feel sad and teary.

There's nothing on the box about tapering but it does say take 5mg x 5 once a day so that's 25mg for 30 days.  Perhaps the dosing is different to prednisone.
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:33:31 PM
Have you checked the directions on each box??? Each box may have a set of directions and the boxes may be numbered as 1 through 5. This may be a long burst and taper. If you don't understand then please call the doctor.

Yes, prednisone can have some side effects and you should call the doctor if you have anything that bothers you. Tapering down too fast can give a person some issues, but we are all different and you will have to keep track of how you feel and check with the doctor if you feel the need.

Also, the pharmacist should have talked about the prednisone with you also to make the directions clear. You can call them and talk to the one who filled the prescription. Check the label and you should see the initials or name of the pharmacist. Good luck. Irish

Yes have checked each box and each box says exactly the same thing.  I'm calling my doctor tomorrow for a chat regarding this and if she's no help, will call the pharmacist.  I've also called the rheumatologist's admin and left a message that I need to speak to someone regarding some medication.  Thanks :)
Title: Re: Prednisone
Post by: cari on July 02, 2015, 03:35:30 PM
I have received Rx instructions written incorrectly or incompletely more than once.  It happens very seldom...but it DOES/CAN happen.  It may have been an honest mistake.  There are enough responses to verify you need more info...and that must have been written incompletely or incorrectly.
c3

I'm wondering if the directions are correct and it's taken differently to prednisone. I assumed it was the same medication under a different brand name.  I'm going to sort this out tomorrow and am glad I asked because otherwise I would have taken them as described. Thanks :)
Title: Re: Prednisone
Post by: cari on July 03, 2015, 01:57:46 AM
I called the pharmacist who said that this was a normal dose given for this medication.  He said that it would be very good for bringing down a flare but the amount given was not usual.  He said that with a 'flare' it would be one to two weeks at a high dose with no taper necessary.  He said for longer than that, it would be given at a low dose for a longer period of time (which is usual for rheumatology) and would need a taper over four weeks.  One week four tablets, one week three etc.  He said that he had no instruction from the rheumatologist on how these were to be taken other than five per day and said it was unusual to be given them for a month.  He suggested that if I needed to take them, take them at the dose prescribed and arrange to see a rheumatologist on how to continue or how to stop them.

In the meantime I've called the prescribing rheumatolgoists' office and left a message again for them to call me in order to discuss a medication.  I want to discuss side effects as well as dose. I'll let you know what he says.
Title: Re: Prednisone
Post by: angelina on July 05, 2015, 04:28:07 PM
I just began treatment for sjogrens too. I take 400mg plaquenil a day and am on 10mg prednisone too.

Different parts of me are attacked each day. Yesterday it was my dry mouth and eyes, today it's my hips and knees killing me........such a weird thing this sjogrens disease.
Title: Re: Prednisone
Post by: irish on July 05, 2015, 07:57:57 PM
My specialists tend to treat with a burst and taper quite often. The first 5 days of a high dose of prednisone can be taken and no prednisone after that. If a person goes longer than the 5 days with a higher dose then a taper is in order.

As a nurse I have seen the burst and tapers done many different ways and they all work--just a preference that a doctor likes. My hubby was on 40 mgm 3 days, 30 mgm x 3 days, 20 mgm x 3 days, 10 mgm x 3 days, 5 mgm x 2 days and 1 mgm x 2 days. This is just an example of one way this can be done.

Out pulmonologist didn't want him on daily prednisone until later on in his illness. He had severe pulmonary disease and was very unstable. At times he would get off the taper and within 5 days he would get worse and I would call and she would say to start the taper again. This worked well for him and even though it was a lot of work keeping up with all his meds plus this very changeable dosage schedule it kept him from having earlier onset weight gain.

Ask your doc if you could take a taper dose and see how it goes and then have the option to do taper doses in the future. The prednisone shot stays in your body for a longer time, but it also decreases in strength within your body as the days go by. I haven't heard or read much about any depression etc with the shots. April is 3 months back at least and I would be surprised if you would still hae side effects.

If you have depression I would think that there would be a med that would work for you. Truth is, Sjogrens patients have a high rate of depression and anxiety associated with the disease and most people need the antidepressants. I swear that the chemicals produced in the brain that prevent depression also dry up with Sjogrens. I have had Sjogrens about 50 years and just diagnosed in 2003. However, I have suffered from depression and horrible anxiety about 45 years and my life was very difficult until I got started on Zoloft back in 1992. I tried about 5 different antidepressants over the years and kept going back to the Zoloft. It treats the depression plus has a high anti-anxiety affect/

I hope you get this settled and have a good experience in the future. Irish
Title: Re: Prednisone
Post by: quietdynamics on July 06, 2015, 05:33:32 AM
Dr. @ Sjogrens Center Rx'd prednisone extended trial.
Instructions in my case were:
Quantity 100 tablets @ 5mg. Take 3 once daily for 14 days then decrease by 2.5 weekly until 5mg daily. Stop.

Hope you get clarification from Rhuem on how to take med.

However, in your post "Dr. prescribed for flare during trip (away from home)" so not sure Dr. will be inclined to refill.  I believe they are cautious with Rx at this dose and it is meant to interrupt a flare.. similar to a pulse.

Side effects are usually for those patients who may have a medical condition requiring med long term. As with most medications "benefit vs.risk" in overall disease management/progression.
Even the long term use of OTC aspirin can have risks.. but, some people need the benefit.

As you likely are aware the efficacy of plaquinel is at the 4-6 month mark.
Title: Re: Prednisone
Post by: cari on July 06, 2015, 09:58:52 AM
My specialists tend to treat with a burst and taper quite often. The first 5 days of a high dose of prednisone can be taken and no prednisone after that. If a person goes longer than the 5 days with a higher dose then a taper is in order.

As a nurse I have seen the burst and tapers done many different ways and they all work--just a preference that a doctor likes. My hubby was on 40 mgm 3 days, 30 mgm x 3 days, 20 mgm x 3 days, 10 mgm x 3 days, 5 mgm x 2 days and 1 mgm x 2 days. This is just an example of one way this can be done.

Out pulmonologist didn't want him on daily prednisone until later on in his illness. He had severe pulmonary disease and was very unstable. At times he would get off the taper and within 5 days he would get worse and I would call and she would say to start the taper again. This worked well for him and even though it was a lot of work keeping up with all his meds plus this very changeable dosage schedule it kept him from having earlier onset weight gain.

Ask your doc if you could take a taper dose and see how it goes and then have the option to do taper doses in the future. The prednisone shot stays in your body for a longer time, but it also decreases in strength within your body as the days go by. I haven't heard or read much about any depression etc with the shots. April is 3 months back at least and I would be surprised if you would still hae side effects.

If you have depression I would think that there would be a med that would work for you. Truth is, Sjogrens patients have a high rate of depression and anxiety associated with the disease and most people need the antidepressants. I swear that the chemicals produced in the brain that prevent depression also dry up with Sjogrens. I have had Sjogrens about 50 years and just diagnosed in 2003. However, I have suffered from depression and horrible anxiety about 45 years and my life was very difficult until I got started on Zoloft back in 1992. I tried about 5 different antidepressants over the years and kept going back to the Zoloft. It treats the depression plus has a high anti-anxiety affect/

I hope you get this settled and have a good experience in the future. Irish

Thanks for your response.  I made a mistake in the medication that I was prescribed and it's actually Prednisolone.  I am waiting for the rheumatologist to get back to me regarding dose etc. As far as depression medication is concerned, thank you for your concern but I don't want to take anti depressants if I don't have to.  I feel down, not depressed.

Thanks again :)
Title: Re: Prednisone
Post by: cari on July 06, 2015, 10:01:12 AM
I just began treatment for sjogrens too. I take 400mg plaquenil a day and am on 10mg prednisone too.

Different parts of me are attacked each day. Yesterday it was my dry mouth and eyes, today it's my hips and knees killing me........such a weird thing this sjogrens disease.

Yes it's strange. For me at the moment it's my knee joints and skin of my shins.  They are burning and the joints are very painful.  You never know where it is going to strike next.  Are you having any side effects from the prednisone?
Title: Re: Prednisone
Post by: cari on July 06, 2015, 10:05:11 AM
Dr. @ Sjogrens Center Rx'd prednisone extended trial.
Instructions in my case were:
Quantity 100 tablets @ 5mg. Take 3 once daily for 14 days then decrease by 2.5 weekly until 5mg daily. Stop.

Hope you get clarification from Rhuem on how to take med.

However, in your post "Dr. prescribed for flare during trip (away from home)" so not sure Dr. will be inclined to refill.  I believe they are cautious with Rx at this dose and it is meant to interrupt a flare.. similar to a pulse.

Side effects are usually for those patients who may have a medical condition requiring med long term. As with most medications "benefit vs.risk" in overall disease management/progression.
Even the long term use of OTC aspirin can have risks.. but, some people need the benefit.

As you likely are aware the efficacy of plaquinel is at the 4-6 month mark.

It's actually Prednisolone that I was prescribed and the dose is different. I'm waiting to hear from my prescribing rheumatologist on how to take it.  It may not even need a taper for a month, I don't know.  I understand that all drugs and supplements have risks, however some have more serious risks than others.  Yes I'm aware that hydroxychloroquine takes a while to kick in.  I was considering taking my prescription for prednisolone in order to feel better quicker than the hydroxy. allows. Thanks again :)
Title: Re: Prednisolone
Post by: cari on July 08, 2015, 08:45:23 AM
Saw a member of the Sjogrens team today.  She instructed me on how to take the prednisolone.  How to taper it, side effects etc

Thanks all :)
Title: Re: Prednisolone
Post by: irish on July 09, 2015, 08:14:46 PM
Are you able to share the info you got with us. I am wondering if it is different from the prednisone. Thanks Irish
Title: Re: Prednisolone
Post by: cari on July 10, 2015, 05:57:16 AM
Are you able to share the info you got with us. I am wondering if it is different from the prednisone. Thanks Irish

Sure, I wrote it down:

1) Take the medication first thing in the morning as early as possible in order to keep in sync with Circadian rhythms.  It will help the medication stop affecting sleep.
2) Take on an empty stomach with water.
3) Only take if you have a flare, no other reason.
4) As soon as the flare subsides, start to taper.
5)  If the dose is 25mg, go to 15mg for 7 days.  Then 7.5 for 7 days.  Then 5mg for 7 days.
6) If when you cut to 15mg the flare comes back, then stay on 15mg. You can't move back up in medication once you start to taper.
7) If you start to experience side effects for example, psychosis or anxiety don't just stop, start the taper immediately and come off it.

She said that it's a very serious medication as are all steroids and to only take it in an emergency which would be a really bad flare.  She said that it can have serious side effects and to try to avoid taking it if I can. 
Title: Re: Prednisolone
Post by: anabanana on July 10, 2015, 10:58:58 AM
Also, it may work or it may not work for you-the prednisone.

It did not touch my pain and symptoms.

We are all different. Our disease and chemistry are different.

I was for 1 month on a moderate dose(40 mg), and then tapered for the next 3 months, because it did nothing for me, except weight loss and fat face :/

Don't be afraid. Just try it. Then you'll know. Good luck!

Title: Re: Prednisolone
Post by: MirkeshCat on July 12, 2015, 06:00:01 AM
Hi there,

I don?t post much but I read here all the time.

I am on 400 mg of Plaquenil (Hydroxy here in Germany) and 5 mg of Pred. The Pred really did make so much difference to me. When flaring I used to have itchy and burning skin that almost drove me mad in the past. With Pred, that is all gone now. I take 5mg permanently, with 10mg for flares. No side effects thus far, except for massive acne which I don?t care for at all.

I hope the Prednisone works for you as well and if so, I am sure it should kick in very soon. Please, let us know how it feels for you.

Title: Re: Prednisolone
Post by: cari on July 12, 2015, 06:28:12 AM
Thank you both anabanana and MirkeshCat for your responses.  It's very much appreciated as I'm very worried about taking this medication and even though the rheumatologist did a good job of telling me how to take it, her stark warnings weren't reassuring.

anabanana - no OTC pain killers or anti inflammatories thus far have helped with the pain I have experienced.  I had a shot of cortisone in April and though that helped lessen the inflammation of a flare it didn't help with joint pain which was still bad.  So it's the constant pain that is the problem for me and I was hoping the prednisolone would help but it seems not.

I have recently started magnesium malate and fresh turmeric and the pain seems to have lessened so I'm hoping that this is the magical formula or it could by the hydorxy. kicking in.

MirkeshCat - yes with the burning skin which was particularly bad on my thighs and shins.  The bad flare I had in April was so bad that it hurt my fingers to write on my computer and the shot helped stop that.  The burning still happens on my shins and my knee joints have been very painful but it is lessening.

Thanks :)