prednisolone

[Tim_Thorpe]

Was put on prednisone today as have so much fatigue and pain still even though I’m on aziophrine 150 mg daily .prof hunt said she would of up the dose of aziophrine but said my liver is not copping with aziophrine well . So has put me on a short course of prednisolone ! Is any one else on prednisone ? Did it help ? And what are the side effects like ??

[lupus-support1 Administrator]

Sorry to read your story Tim. I have been taking cortico-steroids for many years. Our bodies naturally make 7.5mgs a day, but our bodies are very lazy especially when we are taking cortico-steroids: why bother to make the steroids when given it! You don't say the dose or for how long.

If it is for a short length of time, the side-effect will be feeling better! There shouldn't be a problem coming off them either because it is only for a short period of time. Nevertheless, Prof.Hunt may recommend you taper slowly off them.

I wouldn't worry about "side-effects" as this is short term because your body needs a boost. Honestly, if you are worried, it is far better to talk to Pro. Hunt because everyone is different.

Azathioprine is an excellent drug, but it is cyto-toxic which means that sometimes, we need to come off the drug for a while until the body recovers (blood tests). This is why your body needs some help and hence the anti-inflammatory cortico-steroids.

I hope you feel better soon.

With good wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Many thanks 👍

[KellyInTexas Administrator in reply to lupus-support1]

Ros, do you mind telling me What Azathioprine does for Lupus? How is it meant to help? What is the “ average dose?” Is it normally dosed by weight? Is this a common med to add to Lupus management?

It is being considered for me.

My gastro said he uses for certain hepatitis patients who have particular severe complications- I can’t remember what the rather severe issues are... a particular issue. ( not that I have hepatitis- I was just asking him what he experience he had with Azathioprine as he manages my tricky gi system.)

He said his patients do either very well on it or fail instantly and become very ill. He said there is absolutely no way to predict which patients will do well and which ones will not.

I see my rheum Dec 5th. I’ll ask more details then as he would actually manage this.

[WendyWoo50 in reply to KellyInTexas]

Be aware: when I began azathaprine it made my INR very low. It seems to inhibit warfarin (hence I'm on 20mg daily now) so if u take it extra monitoring at the start is needed) 💋

[lupus-support1 Administrator in reply to KellyInTexas]

Azathioprine (Imuran)

Imuran is an anti-inflammatory immunosuppressive that can decrease joint damage and disability in people with lupus, rheumatoid arthritis, and other conditions. In addition, Imuran has proven to clearly improve lupus affecting the liver and kidneys. Imuran is “steroid-sparing,” which means that it may allow for a reduction of the amount of steroid being taken. Since the side effects of steroids generally increase with the dosage, this medication generally promotes a reduction in steroid side effects as well.

People with lupus have overactive immune systems. Imuran works by preventing some of the cells involved in this immune response (specifically, white blood cells [WBCs], or leukocytes) from spreading. Imuran is a “slow onset” drug, which means it may take 6-12 weeks for you to notice its effects. It usually comes in pill form and has fewer side effects than many other immunosuppressive medications. The most common and serious side effects involve the stomach and blood cells. Nausea and vomiting can occur, sometimes with stomach pain and diarrhea. Taking the medication with food may help to reduce these symptoms. Imuran can also decrease the number of certain cells in your blood. For this reason, blood tests should be done regularly to determine your white blood cell, platelet, and red blood cell count.

Less common side effects include liver test abnormalities, hepatitis (inflammation of the liver), pancreatitis (inflammation of the pancreas, a gland behind the stomach, that can cause abdominal pain), or an allergic reaction that can seem like the flu. During treatment, your doctor may perform tests for breakdown products (metabolites) of Imuran that can help monitor how your body is reacting to the drug.

Even though Imuran is effective in treating serious lupus symptoms, long term use of this medication does increase the risk of developing cancer. Your doctor can speak with you about this risk and any other concerns you may have. She/he will work with you to minimize the side effects of your medications while also maximizing the benefits.

In addition to having regular blood tests (CBCs), you should notify your doctor if you experience any of the following symptoms while taking Imuran: fever, a new rash, easy bruising or bleeding, or signs of infection. Be sure to speak with your doctor before taking getting any vaccines or having surgery. In addition, consult your doctor if you are pregnant, may become pregnant, or are breastfeeding, since Imuran can be harmful to your child.

Certain medications may interfere with Imuran, so be sure to notify your doctor of any other drugs you are taking. Medications that can interfere with Imuran include the gout medication allopurinol (Aloprim, Zyloprim), warfarin (Coumadin), some blood pressure medications including some ACE inhibitors (Accupril or Vasotec), olsalazine (Dipentum), mesalamine (Asacol, Pentasa), and sulfasalazine* (Azulfidine).

In a minority of patients (I am one) the body contains a defective enzyme which means that azathioprine is not excreted by the kidneys. This leads to a build up in the body. This is caught by having regular blood tests and if necessary, stopped,which allows the body to get back to "normal."

Azathioprine, is a very effective drug and has been used for many years successfully. I understand that taking cyto-toxic drugs sounds scary, but living with lupus out of control, is not a good idea!

My best advice: speak to your rheumatologist! Don't rely on forums (even here) and especially not the internet because websites are unregulated!

Remember too, many lupus patients come off all medication, after being treated successfully ie SLE goes into remission. Therefore, there is every good reason to believe your treatment will be successful as the amount of research into SLE over the past 40 years, has been remarkable. However, there is still much to understand about the autoimmune system and lupus.

With good wishes,

Ros

[Tim_Thorpe in reply to lupus-support1]

Thank you 👍

[Tim_Thorpe in reply to lupus-support1]

Is aziophrine and prednisolone

Use to just lupus or sticky blood or both disorders??

[lupus-support1 Administrator in reply to Tim_Thorpe]

My advice is to speak with your specialist to understand why you are prescribed the medication. What is prescribed is dependent on alleviating your symptoms.

Both are certainly used to treat SLE, depending on the symptoms.

Cortico-steroids are life saying: they prevent inflammation. However, high doses of steroids over long periods of time, also have side effects. Thus, steroid-sparing drugs, such as azathioprine are used. Many of these cytotoxic drugs are used for the treatment of cancer - but in far higher doses. How well tolerated these drugs, is also a factor.

In any event, you and your doctor should discuss your treatment together.

With good wishes,

Ros

[CormorantWatcher in reply to lupus-support1]

Ros, that's really interesting. Docs put me on Azathioprine twice and I had liver function collapse both times - the first slowly, the second rapidly. I was told I'm allergic to it and not to try it again. In fact, a few years later, it was being considered by my consultant to treat my Ulcerative Colitis, until I pointed out the previous issues. He prescribed Adluminimab (Humira) instead.

Thing is, for both Azathioprine prescriptions, I'm pretty sure I was on Warfarin and probably Mesalazine to treat the UC flares at the time. I was also probably already taking prednisilone (seemed to be the standard steroid I was prescribed for bad flares) up to high dosages (100+mg per day).

I mention that for 2 reasons: the docs thought my initial failure on Azathioprine may have been a result of interaction with the wife range of medication I was taking. The second time they were confident I was on less medication that would interact, but I still had the adverse reaction.

As for prednisilone, it seemed to work for me, but reducing in effectiveness as my UC got worse. I was warned of the side effects of long term use, but I also puffed up and frequently got bad skin (like acne). In fact when I look back at my wedding photos and around that time, I look almost fat, particularly around the face, but was doing a lot of exercise. Apparently that can be a side effect (not weight gain, but puffiness).

All interesting reading!

[lupus-support1 Administrator in reply to CormorantWatcher]

In some patients, myself included, there is a defective gene which doesn't allow the azathiaprine to be excreted via the kidneys. Consequently, there is a build up and I became quite ill, as shown via the blood tests. Thus, a minority of patients cannot tolerate azathiaprine.

It is far better to have steroids infusions at very high doses e.g. up to 1g. There are side-effects such as "mooning" of the face, weight gain etc but they are life saving.

Like you, I also have bowel involvement and take sulfasalazine as well as methotrexate.

Doctors are uncomfortable with patients taking many drugs, which is understandable. But, SLE is so tricky because it affects different parts of the body, there isn't one drug for all. Each time we try to remove or reduce, it ends up badly!

Knowing one's own body is very important and therefore we can and should discuss with the specialist the best course of treatment!

[CormorantWatcher in reply to lupus-support1]

Interestingly (to me) a second opinion from another consultant saw me taken off Humira - the side effect risks were too great for the questionable benefits. I'm now only on rivaroxaban for APS and no UC medication (but have had a total collectomy, so not much to manage...).

[lupus-support1 Administrator in reply to CormorantWatcher]

Very sorry to read this.

With good wishes,

Ros

[CormorantWatcher in reply to lupus-support1]

Thanks Ros. Currently doing the best I have for 10 years, but still not definitively diagnosed and/or clinically fully resolved. A lot of different consultants and it takes an age for each appointment to come up!

[lupus-support1 Administrator in reply to CormorantWatcher]

There should be one consultant who takes overall care of you, with visits to other consultants.

As for appointments, 18 months between appointments is unacceptable but that way, the hospitals can see new patients within the set time frame, else they are penalized. It doesn't say the gap in between appointments, which ought to be 3-4 months. Patients are then seen by junior doctors, on rotation, which means seeing a new doctor each appointment. Many patients are reluctant to insist on seeing the consultant as well, which is their right.

The entire system needs restructuring, by getting rid of the bureaucrats who are well paid, while the NHS workers (nurses, doctors,pharmacists,physiotherapists, therapists etc) are poorly paid.

My rant over!

[Tim_Thorpe in reply to CormorantWatcher]

Why are you using my post about prednisolone !!! To chit chat to a lupus specialist??? I posted the questionto hopefully get some answer to my post 😟

[CormorantWatcher in reply to Tim_Thorpe]

Hey Tim. Didn't mean to hijack your post.

I did start with my side effects of both Azathioprine (bad) and Prednisilone (annoying, but the benefit outweighed the side effects - puffiness, skin problems).

They would always mention the worse side effect of long term prednisone, that it affects your bone calcium.

[Tim_Thorpe in reply to CormorantWatcher]

No problem 🙂

[Lure2 in reply to Tim_Thorpe]

Hi Tim!

I think you should be satisfied. You have put 2 own posts on our site withing 5 days and have had a lot of very good answers indeed.

This site is known as a "friendly site" where we learn from eachother and everyone tries to do his or her best to help.

Remember we all have the same illness here so please try to be patient and have a nice manner when talking.

Also remember that when our INR is too low we have difficulties to spell and express what we want to say.

We can understand that you have had bad days lately as that is probably the case.

Kerstin in Stockholm

[Tim_Thorpe in reply to Lure2]

CormorantWatcher Apologised for hijackingmy post and starting talking about there problems to to lupus experts

So why have you got involved for ?? Please do not harras me was nothing to do with with you !!!

I’ve liked and thank everyonewho has replyed to my post so would appreciate it if you could stop steering up trouble with me and CormorantWatcher as we have no problem with each other just you getting involved for some reason 😐 have a good day

[Fra22-57]

I have been on it for 5 years at 10 mg. I take calcichew d3 forte twice a day and risonedrate 350mg once a week to make it go to the bones.I first had chipmunk face but ok now.some say it makes you increase weight.

I am on it for life.without it is would be a mess in more agony than am.Before put on it I couldn't even lift bed sheet and had to come down stairs on bottom.more agile now

[WendyWoo50]

The down side is I have put on lots of weight.

The thing is it's very difficult to answer ur question as I seem to spend my life fighting fatigue.

I was on 10mg of prednisone and 200mg of Azathioprine.

I'm now on 7.5mg if prednisone and the azathioprine.

Unless I come off it I can't actually say if it's helping me. Sometimes I think maybe I should come of all of it.

I can't take Hydroxy....Quinine (due to a heart condition) so am on Mepacrine instead too.

I also have prescriptions for pain, heart, reflux and am on 20mg of warfarin daily.

I take calcium, vit D, omega oils, vit C & Rosehip, and am just about to start Magnesium oil.

Some days I want to gather them up and throw them all away and take my chances. How do we know if the medication is responsible for fatigue and aches? Obviously I won't do that or advise anyone else to do so.

Sorry I'm not being very helpful. I hope u find ur answers 💋

[Wittycjt in reply to WendyWoo50]

I didn’t think you should take rosehips while on warfarin? Be careful, Cindy

[Tim_Thorpe in reply to Wittycjt]

What’s rose hips ??

[Wittycjt in reply to Tim_Thorpe]

Supplement wendywoo says she is taking. Cindy

[WendyWoo50 in reply to Tim_Thorpe]

They r like a berry. They mix them with vit c to help u fight colds etc

[CormorantWatcher in reply to Tim_Thorpe]

They are the flower buds of wild roses ("dog roses"). They look like mini pomegranates. During WW2 in the UK they were crushed and given to children as a VitC supplement (along with blackcurrant developed into Ribena) as oranges weren't available.

[WendyWoo50 in reply to Wittycjt]

Thank u. I understand that if u take them same time and dose every day it won't affect ur readings. It's when u stop and start. X

[Tim_Thorpe]

Thanks for reply very I helpfull 👍

[GinaD]

I have been on short term steroids a few times. Once for a lupus flair ( and worked like magic!) and other times for horrid poison ivy exposures. ( You all across the pond have no idea how pervasive and nasty that innocent looking plant is! .You can get the rash just by walking by on a hot humid day!) The key is to moniter your food intake. Write down what, how much and how often you ate before the steroids. Then make sure you dont eat more while you're on them!

[Hughes-Comrade]

Double check with your doctor or pharmacist, but long term steroids use I understand shortens your life.