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[mkline]

Hello everyone. I'm a 45 year old nurse who has been dealing with lupus symptoms for five years only diagnosed in the last 18 months. My disease has attacked my red blood cells and my joints. Constant painful/stiff joints, numbness in my hands, Brain fog, anemia, and just huge amount of fatigue. I work full time and have a family of five. I have tried plaquinil, leufudimide and now I'm on methatraxate injections weekly along with folic acid to prevent mouth ulcers. I sometimes feel very alone as if you haven't experienced this disease you just can't understand it. I have a wonderful rheumatologist and use prednisone tapers at change of seasons and holidays. Tramadol prn for the discomfort. Anyways, I just started the injections last evening and wondered if anyone here has used them and had success? My next step is biologic meds if this isn't working until January.

[lupus-support1 Administrator]

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

You are not alone! SLE can take a very long time to diagnose and sometimes difficult to find a rheumatologist who actually sees and treats lupus patients on a regular basis. This is probably the most important aspect for patients, along with a supportive GP.

Specialists will always start treatment slowly for two reasons. First, to see whether the medication can be tolerated; and second, it is easier to gradually increase the medication, rather than the other way round. It also can take time for the medication to work. Since SLE presents with different organs being affected, it may be you need several kinds of medication. Corticosteroids can be life saving, but there are side-effecte which, as a nurse, you know. Sometimes IV steroids are necessary for a necessary "kick" to the body.

I have had a range of medication because no one size fits all. This includes MTX weekly injections. This is by far the best format since the oral MTX can make the patient feel nauseous and I was quite ill with sickness about 2-3 days a week, which gives the patient no quality of life. However, the weekly injection is well tolerated. Usually, the dose is low so the rheumatologist can see via blood tests, that you can tolerate MTX and if necessary will slowly increase it to what is required. It can take several months to see and feel the benefits and while most of us what to feel better yesterday, we as "patients" understand the meaning of being a patient, patient!

Plaquenil (hydroxychloroquine) is an excellent drug and central to treating lupus. It is also a mild blood thinner and is also helpful for fatigue. However, on its own, this is not sufficient. Doctors don't like a "cocktail" of drugs and frequently try to remove drugs, only to find the patient requires them for other parts of the body. Plaquenil is extremely good for skin rashes as well. The starting dose should be 1 tablet (200mgs) a day and then increased if necessary.

Leflunomide (Arava) is a DMARD, used to treat RA but obviously this did not help you, which is why MTX has been prescribed. Anaemia is common but it depends on what kind of anaemia as to how to treat it. If it is a lack of iron, there are iron supplements.

If you work full time AND have a family of 5, any woman without lupus would be tired! Nevertheless, I understand the difference between ordinary tiredness and lupus fatigue! I have had lupus since adolescence, even earlier perhaps, but I was not diagnosed until my 30s after seeing 6 rheumatologists!

You are NOT alone. I am here to help in any way I can. One of the missing aspects is the toll lupus has psychologically and emotionally. SLE can cause depression and anxiety and can even precede any physical symptoms. There is also reactive depression, a "normal" response to the horrible changes in your own body and being powerless.

I am sure that you, as a nurse, know everything I have written, but you are also a patient and a human being whose life has been turned upside down.

We 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.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

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

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.