I have lupus and aps and due to a flare that's lasted 10 months the rheumatologist started me on azathioprine. I started on 50mg twice daily with little effect so it was increased to 3 times a day. Then my liver enzymes shot up so had to stop the azathioprine was gutted as it had just started to make me feel better!
Now my liver is back to normal they want to try the azathioprine again at just 50mg a day.
Is anyone else on a low dose with good effect?
Really want to feel better, I'm now on bupronorphine patches for the pain which helps but still have the underlying problems so just want something to work!
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Sara_A
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Its really a hit & miss with this disease, im on 2 x50mg a day the last 12 yrs i been so many & we just try til it works & i feel better. Just upped my methotxate to 8 pills a week from 6, 2 plaquenil daily as well along with a aspirin therapy every other day, and calcium 2x a day & folic acid 1mg day, whew. I was taking the Methotrexate shot but have switched doctors and then went back to my original doctor because of insurance and me moving issues so he took me off the shots and my normal doctor told me to go back on them but I didn't want to go back to the shop I decided to take the pills was tired of the bruising on my thighs
Patience is the answer let the doctor do their duties and be involved as much as you can I've talked to people who have Lupus that don't take anything at all and I don't know how they deal with the pain hope you feeling better and soft hugs
I was on 50mg for about three years. My symptoms got a bit worse so increased to twice daily. My bodey was not tolerating twice daily as felt sick,nausea, loss of appetite, rang gp advised me to stay on 50mg which is working fine to control the symptoms. So just hang in there sometimes its trial and error.. good luck!
Great thanku, will keep my fingers crossed that it does. It's my hands, thumbs, wrists and elbow that are the worst and I have a 10 month old and a 4 year old and some days I can't even pick my baby up and even when I do I don't use my hands I use my forearms and inside of elbows, so it's a struggle. Just little things like getting out the car is like a major task! Ha.
Why not ask your Dr. to try mycophenolate........it is also an immunosuppressant used to treat Lupus. Fortunately, cellcept (mycophenolate) does not affect the liver like azathioprine does. It will take anywhere from 8-12 weeks to work, BUT it also can cause side effects, one of which can be raising your blood sugar, so you must be monitored closely with frequent blood tests.
Dr. S. (in the USA)
My specialty is Neuro-Ophthalmology, NOT Rheumatology, however, I also have Lupus and take low dose prednisone and cellcept. I personally don't believe in challenging the liver again with the same drug at a lower dose, I would use a different drug. Only YOUR Dr. knows what is best for you. Being a physician I have some say in how I am treated for my Lupus.
Yes well I did question why they would try azathioprine again but my gp just said they probably would prefer me to be on that than anything stronger? Will be seeing my rheumatologist again in January, he was supposed to call me back about 2 wks ago to discuss but hasn't! So will see but if my liver starts again I want to go onto something else
yes you are lucky that you are a physician bc i am sure other drs listen to you regarding your lupus issues more so than those of us that are not...i am sorry you have lupus and know you struggle with the same pain and agony as the rest of us but being a dr yourself helps with the other struggles of getting a dr to listen and believe in what we as patients are trying to tell them...take care
You are correct to a degree, after suffering for almost 4 years and not getting a diagnosis because everyone checked my ANA (which was always negative) and said they could find nothing wrong I finally got extremely frustrated and spent about 4 days in the medical library researching my symptoms. On the 4th day I read something that surprised me.....about 1-2% of people with Lupus will often show a negative ANA. I ordered my own tests......dsDNA and multitude of other test. My dsDNA came back through the roof (anything over 4 is considered positive).....mine came back a 36 and I still showed a negative ANA (however other tests confirmed I had a severe case of Lupus). I ordered other tests including a spinal tap which confirmed I had all 3 types of Lupus.........SLE, discoid and CNS. I can't say here what I said to the Dr's I had seen (too unbecoming!). I went to talk to the chief of Rheumatology where I practiced and explained everything I found and we both agreed to start me on Plaquenil BID, 40mg prednisone (which i have tapered down to 5mg daily) and Cellcept 1000mg BID.....now down to 500mg BID. It has made a huge difference in my life - not completely fine, but better. I got terribly frustrated because no Dr. treated me as I treated my own patients.........LISTEN TO YOUR PATIENTS COMPLAINTS AND DON'T STOP UNTIL YOU FIND A DX.....THERE IS ALWAYS A REASON FOR A PATIENTS PROBLEMS.........THAT'S WHY I WAS CHIEF OF NEURO-OPHTHALMOLOGY AT THE HOSPITAL I PRACTICED. As I found out, not all Dr's practiced the way I do which is a drastic shame and rather shameful on their part........even in my case they were in too big of a hurry.......how sad!
VaderViper, My DSDNA has been over 200 for 12 months now. I am on Pred, Hydroxy and Cellcept but it is still not coming down. What Next? Feeling really low and finding it hard to keep working. Just thought I would pop a few pills and be back to normal!
This is not my field of expertise, however if this were me, I would insist on increasing the dosage of Cellcept (which can take 2-3 months to kick in) as well as increasing the dosage of prednisone to 40mg or even possibly higher for a short period of time and slowly tapering down......the taper will take 4-8 weeks. YOU NEED TO SUPPRESS YOUR IMMUNE SYSTEM. The object is to suppress your immune system and keep it down to where your numbers are in an acceptable range. I assume you are taking 200mg of Plaquenil twice a day.
I don't know your present dosage of Cellcept, but I can tell you I was pushed up to 1000mg twice a day and also put on 60mg of prednisone daily which we tapered down to 5mg daily over a period of about 3 months; I presently take 500mg of Cellept twice daily along with Plaquenil 200mg twice daily (BID). This was done by my Rheumatologist.........you should talk to your Rheumatologist and ask what he suggests as you are not happy with your numbers.........ONLY HE/SHE KNOWS THE BEST WAY TO TREAT YOU..........BUT REMEMBER, YOU ARE YOUR OWN BEST ADVOCATE........AND BE ASSERTIVE!
I realize I was more pushy and was listened to because I am a physician as well...........BUT YOU HAVE A RIGHT TO BE HEARD AND EXPLAIN YOU ARE NOT HAPPY WITH YOUR NUMBERS AND YOU WANT HIM/HER TO BE MORE AGGRESSIVE!
Has you Dr. performed these different blood test?....He/she will know why they are done:
CBC
ESR
CRP
Anti-phospholipid antibodies (about 50% with this antibody will get blood clots over time)
Chromatin antibody (60% of people with this will develop lupus nephritis)
Coombs antibody
Ribosomal P antibody (this test is 100% specific for SLE)
If he thinks you may also have Raynaud's phenomenon.....then you should have an RNP antibody as well as SS-A (Ro) and SS-B (La) antibodies done as well.
Hopefully I have given you more information that will help you.
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