Newly diagnosed with lupus...looking ... - LUpus Patients Un...

LUpus Patients Understanding and Support
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Newly diagnosed with lupus...looking for lupus friends!!

tazzydevil
tazzydevil
13 Replies

hi. Im Tracey. 36 years old. I was diagnosed with lupus in september. I don't know a single person with it and it would be lovely to talk to people with it.

Im quite mild i think. Just started on mtx and feel a bit sick but ok.

Does the sickness last?

13 Replies
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milkwoman

Hi Tracey - welcome!

I was diagnosed in June 2014 after suffering for 2.5 years. I also have Sjogren's Syndrome along with suspected APS.

I'm not on mtx but Plaquenil. I know when I first started taking Plaquenil, I had stomach issues and it was due to the generic form of the drug. Once I went on the name-brand, I've had no issues with the meds. Perhaps it is the same with mtx?

If you fill out your profile then we would know a little more about you (symptoms, etc.).

Tracy

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lupus-support1
lupus-support1Administrator
in reply to milkwoman

Methotrexate is different from hydroxychloroquine. It is used to treat forms of cancer but in lower doses is helpful for some patients with SLE, especially if there is joint involvement. One of the side-effects is nausea and sickness and sometimes anti-sickness medication is prescribed. In my experience, the weekly injection is far better. MTX is an immunosuppressant which means the person has less resistance to viruses because it lowers the immune system. It is ironic that SLE makes the immune system over work and attacks its own cells and bodies; and taking immunosuppressants which makes us vulnerable to infections.

MTX is also a steroid-sparing drug which means that doctors no longer have to prescribe high levels of corticosteroids daily.

Be well!

Ros

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lupus-support1
lupus-support1Administrator

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked!

If you are taking MTX orally, there is more chance of sickness. The alternative is to use the weekly injection method which, some suggest, is better than taking it by mouth.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

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tazzydevil

Thanks for your replies. Ive now updated my profile a little. I took methotrexate for the first time on monday. Felt a bit odd tuesday and wednesday. Today i feel ok. Just tired.

its nice to talk to people kinda going thru the same thing

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Atibrat
AtibratLUPUS SUPPORT

Ros I am trying to avoid MXT or my rheumatologist has mentioned Imuran. Do you know if these medications are less harmful than prednisone? My doctor said if I can stay under 5 mg of prednisone a day we can continue. Luckily with the Plaquinel at the moment I am holding at 2 mg a day of prednisone. I am not great but better. Have you ever had to take anything like Imuran or MTX.

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lupus-support1
lupus-support1Administrator
in reply to Atibrat

Apologies for the delay. Corticosteroids can be life saving and sometimes they are necessary because they reduce the inflammation that is attacking your body - including organs of the body. Ideally, under 7.5mgs is the aim because the body naturally makes 7.5mgs a day. However, the body is lazy and if the body gets it via medication, the body doesn't bother!

Both MTX and Imuran (Azathiaprine) are "steroid sparing" drugs. Both are immunosuppressants. MTX is used to treat some forms of cancer in larger doses; while AZA is used in organ transplants. In lupus, these drugs are prescribed in much lower doses. What is prescribed depends on the individual's symptoms.

I was prescribed AZA but unfortunately, my body was unable to break it down and excrete it, making me rather ill. This is why regular blood tests are essential - at least every month - so that any adverse effects can be seen and the drug stopped. I take MTX and have done for many years.

Plaquenil (hydroxychloroquine) is an anti-malarial and has been used to treat SLE for many years. It is also helpful for the fatigue and I have found it very helpful for a variety of skin rashes. Sometimes this is all patients need.

All depends on your symptoms and what is being affected.

Please remember that I am not a medical doctor and all decisions must be made with your own doctor.

With good wishes,

Ros

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tazzydevil

Steroid shots have been the only thing to work for me so far. Im still taking hydroxy but its fairly useless for me. Mtx is a stetoid reducing drug so i apparently wont need them anymore once its kicked in.

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lupus-support1
lupus-support1Administrator
in reply to tazzydevil

It takes a while for MTX to kick-in especially as the dose will be low and only gradually increased - you do not want to take more than is absolutely necessary. It is a well established drug which is also used in rheumatoid arthritis, which is genetically related to SLE, along with Type 1 diabetes. All are autoimmune conditions.

With good wishes,

Ros

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angus50

Hi Tracey

A big warm welcome to you.

I too was like you over twenty years ago but lots of things have changed for the better since then, so I would say it's not at all doom and gloom.This is a wonderful forum to ask questions if your not sure or just for a friendly hello. I too take mtx but I am lucky to report I have never felt sick on it, so when you next see your dr mention it as you they maybe able to help. Keep smiling if you need or want to have a chat drop me a line.

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Hidden
Hidden

Hi Tracey, if you use facebook there are two groups that I'm signed up to, firstly one that I administrate for called Lupus Loopies UK, which is a kind of offshoot from the East Midlands Lupus group, and the other is Lupus UK (not the charity). Both offer support and advice and a friendly place to share thoughts and offload. It's pretty horrible when you're first diagnosed and support can be really vital to getting you through the first few months. I was diagnosed in November, and still feel the need for the support I get on these groups. They really help in terms of checking your symptoms out with other people too. BTW, whereabouts are you based?

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tazzydevil
tazzydevil
in reply to Hidden

Ah thank you...i will def take a look. Im in bedfordshire.

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Hidden
Hidden

I'm in Leicestershire, so not too far away.x

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miltonmadden

Hi Tracey I hope you are keeping okay. I am sorry to hear about you being diagnosed with Lupus. I have had SLE Lupus since I was 4 years old however I did not get diagnosed until 1998 which is quite a long time after. It is something that you get use to living with when you have had this medical condition a while but at first it is strange and there is so much information to know about. I have joined a website called Lupus team which I found on Face book when I use to be on there and it is a really good website where you can chat to other people with the same or similar medical condition to yours and you can get information and know about where you can go to get another opinion and you can write down how you feel so it is like a chatroom to express how you feel. I would go on this chatroom and see for yourself but if you need to ask me anything my name is Lillian nice to meet you. To get rid of nausea or sickness my dad use to boil ginger in water on the stove and then I use to pour it in a cup and drink it it really works so I would try that or Andrews that will settle your stomach. Take care speak to you soon. :)

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