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Does any treatment ever work?

432 Views 10 Replies 9 Participants Last post by  Lupo30
Hi all.

Have been diagnosed with sle/sjogren's overlap 6 months ago. Since then I've been on hydroxychloroqine and prednisolone. The prednisolone sent me a bit mad (arguing with everyone) so I've now been switched to azathioprine, only 25 mgs, though, but I can barely get out of bed on this. Went to see the doctor today (not rhemy) as I was desparate for any help, but he said he will have to read through my notes and I will have to go back and see him. I have three/four autoimmune conditions (diabetes type1, coeliac disease and sle/sjogren's) and really I am just wondering whether I will just have to put up with this fatigue and come to terms with the fact that if I get out of bed before 10 am, this is the best I can expect out of life. Any words of encouragement.

Thanks everyone xxxx
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Hi lupo,

Welcome to the forum:welcome:

I'm sorry about your diagnosis and that you are still struggling.

The first thing that jumps out at me is that your azathioprine dose is very low. If you are still having a lot of symptoms, an increase in dose seems a logical thing to try. The dose is typically 150mg, less if you are very small or only having realtively mild symptoms. You've only recently gotten to the time frame where you can expect that the plaquenil has reached maximum effect. Since it works slowly, it is easy to not really notice the improvement it gives, but if you were to stop it you'd probably realise how much it had really been helping.

What symptoms are you having? How are your blood tests at the moment?

Unfortunately fatigue is one of the least treatable of all SLE symptoms, and one of the least understood by doctors. There are a few things you should aim for - getting regular exercise (even if it is just a gentle stroll), getting daily social contact, and treating depression. Aside from these things, there is a degree to which you need to accept and adapt to your limitations.

I have pretty good disease control at the moment - good bloods and mostly mild symptoms, yet I certainly can't function normally - getting up at 10am is early for me, and most days I need a nap overday if I do have to be up early. An 8 hour work day is only possible for me if I slit it in two and sleep in between. If I stick to those limitations and don't push beyond them, I cope pretty well, but if I don't then my lupus symptoms get worse.

I'm sure other people will be along too to share their experiences of coping, and what for them is acceptable and not.

Hang in there,

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Hi Lupo,
Cath is right it is a low dose, should ask doctor that gave medicine if it is an option to up the dose until you either find that it helps or you have reached the highest dose they can safely put you on and it is not working at all. The plaqs is just reaching a point were it is at it's full ability to help you other than dose changes there also. The fatigue is a life adjustment.

I find that if I stick to a simple schedule that I do feel better. I try to do a little walking every day even if it means when I am picking up making extra trips to get exercise. I talk my medicine at or about the same time everyday, and I plan for a nap about mid day. This will only help, it will not stop you from feeling fatigued.

Cath was right about socializing, getting out once in awhile, and watching for signs of depression. Depression in it's self can make you feel very tired. You might want to talk to the doctor about the depression issue. I did not think that putting me on an antidepressant would help but it has a little. That seems to be the favorite word a little. Some help or relief is better than none.
I hope you start feeling better soon and am sorry you have been dx with so many diseases, but at least you know what your dealing with now.
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I agree, you're on a really low dose of Imuran (the brand name). I'm on 150 mg. as well and it took about 3 months to kick in and now at month 4 I'm feeling quite good. I've been on Plaquenil for 19 months and methotrexate before that and they both took several months to kick in. Don't be discouraged, it's hard to wait to feel better, but I'm willing to bet that once you get on the right mix of drugs and the proper amount, you will start feeling much, much better. Try to find out why you're on such a low dose of the azath. I doubt 25 mgs. can do much of anything to help you.
I'm not on imuran, been on mtx for nearly 17 years tho. One of the things we need to keep in mind with the chemo drugs is that they kill off the rapidly dividing cells which cause the inflammation. At the start of taking the drug, it has a lot of work to do to deal with the whole onslaught of the inflamm cells. As you take it, you will find that it does better and better at getting caught up on the inflamm cells that need to be destroyed. Also remember that you will then have those dead cells in your body which your kidneys need to filter out. The blood can only carry so many cells away at one time, so give it time to get caught up. I usually figure at least 2 days for it to do its job.

You need to go see your rheumy about this and talk about why the dose is lower than normally used. Perhaps he has found better success in moving slowly with the increases so he can monitor what your reactions may be.

Plaquenil has a half life of something like 105 hours. That means that it does not reach its peak therapy dose until then, and then it starts to wind down. With each successive tablet you take, you extend this out and get the benefits of it. So, it is a drug which needs to reach cumulative benefit. It may be longer in your system. When I was taking it, I found initial benefits within 8 hours of taking it. So, again, talk to your rheumy about this.

Something which has worked well for me, is to write down my questions and observations and take them with me to the dr visit. This way, it prevents from forgetting to bring something up. I call these "grocery lists" as I include everything. My doctors keep these as part of my chart and make notes of their own on them. [I have a foster puppy and had to take him to the vet recently. I did a "grocery list" of my observations and questions to the vet. She checked off each one as we got thru them. side note---she was very happy to get it, and kept it in his chart]

Hopefully this medication will work well for you.
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Thanks for your messages, I really appreciate it. I have to wait until mid January to see my rhemy. Have spoken to the nurse but there isn't much she can do, she says. I am going to keep trying and praying.

Love to all and thank you for your messages.
Hello there :)

I just wanted to agree with the others that 25mg is a very low dose of imuran. I have heard of some people "startting" that low but there is then a plan to increase gradually (though in that case they're usually seeing the rheumy pretty often or it has been discussed with the GP).

I would like to help encourage a little. In treatment terms 6 months is actually very short (I know it seems like forever for you) and when I was 6 months into treatment I felt rather like you do and wondered if it would ever get better. It did and it got a LOT better.

Like Cath my disease is moslty contolled for the moment but like her I don't live by what other people would call normal. I do get up later, I do take naps, I have to plan my day (i.e. will I do X or Y? as I certainly can't push to both). Doing more as I have done recently pushes me quickly into a flare - I have to be careful but I now know how to react, when to see the doctor quickly.

When you do see the doc make sure you don't play down how you are feeling and remember that although your doc is an expert (we hope) he/she has never actually experienced your pain or tiredness and therefore finds it very hard to actually understand. It needs describing very clearly.

hugs :hug:
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Hi Lupo

You've been given some good advice.

I don't think I'd go back to a doctor who said you have to set up a second appt so that he can read your file. The doctors I go to read the file when I show up for an appt.

I hope your fatigue eases up.
Hi Lupo
You have been given excellent advice. I'd just like to add that eventually you do get to know your limitations and live within them. I've been diagnosed for 5 years now (SLE, sjogrens, scleroderma) and I now know exactly what I can and can't do without triggering a massive flare. Having said that I do push it at times and pay for it big time. Until August last year I was really well controlled on plaquenil and arthrotec (minimal meds) and then I pushed things - and became very ill. I'm now on a low dose of steroids and just about back to my normal. I have made a resolution - not to push it again.

Good luck
How are you sleeping?

Dear Lupo,

Sorry to hear about your fatigue. How are you sleeping at night? Do you feel rested upon awakening? I think recovery and improvement requires a good night's sleep. If you are having trouble sleeping, make sure to bring it up with your rhematologist.

I second the writer who said not to return to the MD who said to return for a second visit after reviewing your chart (you should say that you will pay your bill after he/she gives you actual help!).

Stick with a rheumatologist who knows you and can keep the whole picture in one file (if you think he/she has been effective at helping you).

I have only had Lupus for 2 yrs but I think I went through an extended grieving period the first year as I adjusted to the fact that this disease might be chronic for me and that I may never be able to do all the things I once did. It is a lot of information to take in and just dealing with chronic pain can take its toll. If it helps you to talk and hear from others, please continue to write to your hearts content. SOmeone will be here to listen and help. I also find things easier to accept after reading what some other sufferers are going through (I definitely am grateful for mild Lupus)--it's all relative I guess. Acceptance is also easier if those in your life are understanding. Sometimes it takes telling people about your disease to get support. ALso, if loved ones are there for you, you'll get extra support when you are low.

Thanks for writing and hang in there!
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Thanks for your messages. I have cancelled the appointment with the dreadful doctor and am going to wait until I see my rheumatologist next week. I am not sleeping well at all and I am going to speak to him about this. I am do my best to stay positive and am going for short walks a couple of times a day to build my strength up and eating loads of healthy food and taking my vitamins. I really would love a good night's sleep though, I do feel very agitated. Thanks again everyone, love

Kat xxx
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