[Asoka]

Hiya Everyone

Wonder if you could help?

I have Lupus for over a year now (even though it feels much longer) I currently take 10mg of pred, and 150mg preq. The consultant was trying to reduce my pred, but if I go down to 9mg, my whole world starts to fall apart
Saw my consultant this week and they want to introduce Azathioprine. The steriods have already started to affect my bone density!!! So he said this will help i reducing steriods..

I am really quite scared..I have read up on it and the side-effects and what it can do to your insides is less than to be desired!!! What I would like to know, if anyone is taking this and are they okay?

Anne

 

[spellbinder]

don't know

hi again anne

i just wrote a post in your introduce post and it seems you answered a couple of questions there

i'm sorry i can't answer this question for as i haven't been on steroids for many years. i don't like them and as you said the side effects are less than desirable. but i know there are many here who are on steroids and i think there are some here taking the one you;re talking about. i'm sure someone will come along with better feed back than me.

feel better
hugs and kisses

 

[Joandublin]

Hi there Asoka

Welcome to the Forum. I dont take Azathioprine myself but there are lots of people here on the board who do and Im sure they will be along soon to tell of their experiences. I know that many have had excellent results from the drug and few, if any, side effects. Its also called Imuran by the way. Its whats known as a 'steroid sparing' drug and it can be a great option to get off the steroids. I am on steroids myself now for over three years and have lost a considerable amount of bone density as a result.

I just wanted to ask you something. You said you were taking '150mg preq.'? Im not sure what you mean as I dont recognise this? Did you mean Plaquenil by any chance as, if so, its quite an unusual dose to be on.

Hope to hear back from you soon
Take care

Joan:rose:

 

[Clare.T]

Hello Asoka and welcome to the forum

Many of us take azathioprine (Imuran) without any side effects only benefits. The full side effects listed by the manufacturers is always horrific as it has to include absolutely everything. Often the doses referred to are those used for other diseases whereas with lupus most of us take a mixture of medicines using the lowest possible dose to get the most benefit while minimising possible side effects.
While you are taking AZA you will be closely monitored for 'hidden' side effects such as changes in the blood. The most common side effect first experienced is nausea but this can be reduced or avoided by starting on very low doses and building gradually up.

I am wondering if you meant to write 150mgs a day of Plaquenil. This would be rather a low dose unless you are very small. Maybe you have issues that indicate a need for AZA but an option might be to add an another anti malarial to the Plaquenil, called Mepacrine in the UK. The two together can be very effective for general lupus when there's no organ involvement to be considered.

It can very hard to reduce the Prednisone and has to be done very gradually indeeed. AZA can help reduce the need for steroids but some people find they need to keep on it and take supplements or medicines to reduce the osteoporosis risk. Some people's adrenal gland doesn't start producing cortisol naturally - your doctor can do tests to find out what is happening.

Good Luck with it !

Clare

 

[ROSJAC]

Hello again Anne, I took AZA.(Imuran) for several years and did great. I had frequent labs done while on it. Then all started going down hill. The Imuran caused my liver enzymes to elevate to 250(normal is 35).So my Rhumy said to stop for 6 weeks and enzymes started to fall, but as soon as I started back on AZA, they shot back up. So now I am on Cellcept. We all react differently to meds. Bottom line , have your labs done. I hope Imuran helps. The fact sheets that come with the drugs can be scary, but I was told very few people have these reactions. Best of Luck, Rose

 

[Katharine]

Hello Anne and welcome

I have been on azathioprine (imuran) for about a year and a half now and have had no trouble at all with it. Obviously bloods are closely monitored for those hidden problems that can arise but imuran is generally far preferred to prednisolone by most rheumies because it is a "steroid sparing" drug, in other words it "spares" you the sometimes serious side effects of prednisolone. It can be a very useful addition to your med mix when your disease simply won't come under control with plaquenil alone.

As the others have mentioned there are also other alternatives if imuran doesn't suit you. I too was wondering about the 150mg and if that is referring to palquenil wondering why the dose is so low?

speak soon,
Katharine

 

[LolaLola]

Anne, Hello! A friend of mine takes Azathioprine and does very, very well on it despite the fact that her illness has in the past been very severe.

I would really encourage you to try this.
I remember someone e mailing me some supposedly horrendous side effects of something I was taking, I decided not to even read it, and have no regrets at all.
xLola

 

[Jesse88]

I was switched from MTX (another drug with a scary side-effects list) to Imuran about 6 months ago. Except for some queasy stomach problems, I've done very well on it. In fact, the queasiness helped me to keep my weight down but it was getting tiresome so I started taking Activia and my stomach problems stopped. Now I'm gaining weight again. Rats! Anyway, so far so good as to the drug's effectiveness and so far the blood work is OK too.

I know how nervous you must feel about starting a medication with the kind of warnings Imuran has. Most of us felt the same way, but it comes down to, which is more dangerious, the medication or the disease? For us it's the disease, so our choice is clear.

Good luck. If you decide to go ahead, feel free to post with any other questions that may come up. We're all in this together.

 

[lin]

I can only give you my own person experince, and for me it was good, dont get me wrong felt sick art first, hair went funnt, but all ok after that,

nevcer got of the prednislone, but got lower in dose, i took it from jan 05 till this year, having come off it and now on cell-cept,
as steriods were going up, and consultalnt said the Az wasn't doing anything for me, but i think its a good drug and one to try, all the best with it


take care Lin xx

 

[onetay]

Anne,
I only take steriods during a flare, just for the reasons you said. I know some have to stay on them year round in low doses. Is there something else they could put you on that is not going to hurt your body as much. I have never been on the medicine that you asked about but wanted to wish you the best with finding a way to manage your health and the medicine all together. I hope you are well.

 

[Asoka]

Thanks Everyone

Hiya

Thanks for so may replies..you have all put me at ease about going on this new medication.

My appointment to see the Dr regarding starting it came through yesterday, and I go on the 26th March..aaarrrghh..it will be okay.

Alot of you mentioned the amount of Plaquenil i take, so had to just go and check..and I have to take 1 1/2 tablets..which works out at 150mg..I do also take calcium tablets for my bones..

I am actually not feeling at all well this week..so tired and run down..I am sleeping all the hours possible and still feel like I have had non..its been a long time since i have felt like this and it is such a pain, as with 3 young boys its just impacts on their life!!!

I have also noticed, that I am very thirsty and feel dry inside..does that make any sense?? I also have come up in alot of spots!!!:rotfl:

 

[Clare.T]

Hello again Asoka
I am glad you feel reassured - just remember to start it slowly and mention this to your doctor. if he doesn't say anything.
One reason we have been puzzled about the dose of Plaquenil is that the tablets are usually 200mgs each.
Maybe you are sickening for something, not lupus related?


Cheers
Clare

 

[Katharine]

1 1/2 tablets would make 300mg which is far nearer a normal dose for someone whose ideal body weight is quite small and light. Each tablet is 200mg.

 

[angiepollock]

Please make sure your doctor does the liver test while you are taking this medicine. My daughter had one test for her liver when she started the medicine and 3 months later she was in ICU because the doctor did not monitor the liver and her liver was elevated to over 900...... Every time I asked about her test they always said everything was good, now we no they were not testing the liver..... Now we ask for copies of her lab's. I hope the medicine works and you can take it. She companied of being very tired , vomiting, could not even take a shower. and it just got worst over time until she went to the Emergency Room.. Best of luck just be careful. Angie

 

[Asoka]

The palquenil I take comes in 200mg from the chemist..due to my body weight I have to take 150mg which is a tablet and a half- which is a pain, breaking half a tablet!!!!

Thanks for you advice regarding liver function test, will def keep my eyes open for that..

Once I have had my appointment will let you all know how it goes..but will def keepin in touch every few days anyway until then.

Mwah.

 

[Sally88]

this is uncanny... i logged in to ask exactly the same questions about azathioprine as yesterday my dr recommended i start it, but i was also worried about the huge list of horrible side affects. youve all made me feel better im also due to start it on the 26th of march - coincidence?! hope you do well on them x x

 

[Asoka]

Hi Sally

Well since we are both starting at the same time, lets keep in touch and we can compare notes!!! Good luck to you aswell. Mwah Anne

 

[Pink Pearl]

Something to remember when taking chemo drugs and reading the flyers which come with them is that we are NOT taking them for cancer. We ARE taking them to reduce inflammation and control autoimmune disease activity. Generally we are on these drugs for a longer period of time than when they are given for cancer. SO, that is why labs are vital to do as little damage as possible.

I have found that it is best for me to keep compazine and lomotil on hand so if I need to use them, that they are here. I also live 3.5 miles from the nearest town, and 7 from the closest pharmacy. So, it works best to have everything on hand.

My oncologist found that he could reduce side effects from chemo with giving a B-12 inj at the same time as I got my IV for chemo. I have kept this up and it has helped my liver be able to handle the toxic effects of the chemo as well. Talk to your oncologist/hematologist about it for you. It may be right or not, just what has helped me to survive 17 years on chemo.

I hope that the others who have taken imuran have been able to give you some feeling of comfort with starting it. It is always scary to start a drug which is used for a scary disease.
Good luck to you....the first is always the hardest....so much unknown.
Sally