Does everyone diagnosed get put on some kind of treatment?

[jp83]

Just wondering if everyone diagnosed with a positive test for lupus get put on some form of treatment even if their symptoms are mild?

My own symptoms seem to be mild compared to some people but I'm wondering if the rheumatologist will treat me with something anyway? (already on aspirin for APS)

[Fighting]

It seems that the symptoms lead the treatment. It may be that as long as the aspirin works, nothing else will be prescribed. I would also monitor myself and watch for typical signs of lupus activity.

[jp83 in reply to Fighting]

I think I've possibly just learned to put up with possible symptoms due to the GPs not getting to the bottom of things and possibly my own attitude of ohhh it's just normal tiredness, I've got three children, at uni etc, hubby, home to run....migraines put down to the same, itchy flaky scalp just bad dandruff.... I just don't ever know if it's bad enough to be something else or just normal fatigue etc... The tiredness has been very noticeable lately however x

[Fennella02 in reply to jp83]

Hi there. I can totally relate to the habit of attributing the host of strange symproms to 'something else'. My husband warned me years ago that it would be too easy to blame absolutely everything on Lupus so, with that still ringing in my ears, I blame almost everything on viruses, hormones, old age, lack of sleep, over doing it etc etc. I have had Lupus for 25 years so you would think I'd be wise to it all by now!

With regard to drugs, there is a balance to be made between the potential side effects of drugs and the need to keep the condition under tight control to prevent progression. I managed for 20+ years on very little and hauled my protesting body through the flares. Now I need a little more help to stay well. Good communication with your GP and rheumatologist will help. Hope you are soon feeling better. Clare x

[Fighting in reply to jp83]

I agree that separating out what to complain about and to whom is close to impossible. Also, the same issue gets opposite opinions dependent on the specialty. My rule of thumb is to read and research as much as possible. If there is something that fits with me, eating, exercising, I attempt to integrate it. Sometimes it works and sometimes it doesn't. I sometimes need to try out a couple of "remedies". My fingers were all feeling sprained, thumb joint ached and wrist ached any time I typed (keyboarded?). I started using Voltaren gel prescribed by a hand specialist a number of years ago. I have since found an ergonomic cushion which sits me up differently. the aches and pains are less.

I hope you are a catnap person. I would try a short snooze for a week and then try mild exercise for a week. Then I would evaluate. I would also mention it the next physician visit.

[Chris21]

The rheumatologist should monitor you. I was started on hydroxychloroquine immediately but it takes a month or two to begin working in the system, next came aspirin for "sticky' blood. I also have sjogrens so have viscotears and saliva spray.

I take paracetamol for aching or any other joint pain.

At my last consultation he did think about upping my hydroxychloroquine as I'm only on 200mg and looking at stronger pain management, but after a discussion he decided to wait and see how I get on in the next couple of months as I had the beginnings of a chest infection which could've explained why I was feeling rubbish (most of the time I feel ok) I don't think I have as much as some people with lupus.

I think it depends on the individual as to how you are feeling, what your bloods are doing as to what medication you have. Looking at this site everyone has various medication.

I hope you continue to have only mild symptoms

[jp83]

Thanks Chris, I do wonder if I'll not realise how tired I really am now until I actually feel better!!

[georgie63]

Hi,

I too only have supposed mild SLE Lupus, but I am on hydroxychlroquine twice a day.

As far as I'm aware it's not internal on me, I seem to suffer with severe itching, lesions on my arms, rashes and the big one fatigue. I do also have Sjogrens and Underactive Thyroid as well as Chronic Pelvic Pain, for which I take morphine for the pain.

As I'm on the morphine they don't like to give me too many pain killers for pain, but really I could do with more.

Let's hope your doctor will give you something appropriate for your symptoms. But I'm now finding not a lot of doctors are aware of lupus and its symptoms. I've asked mind if I should be having regular blood tests to keep an eye on the lupus and I still haven't received a reply.

Good luck

Xx

[Fighting in reply to georgie63]

The hydroxychlroquine builds up in the system over time. This is based on what the Optometrist said. He found one cataract. The Ophthalmologist found cataracts in both eyes. I took 200mg once a day over 29 years. Everyone is different, but cataracts had not been diagnosed in my immediate family.

[diane1428]

I have been on hydroxychloroquine for 9 months now and it has given me a semblance of life back. I certainly couldnt to without it. I was quite terrified on Thursday as I went to see my consultant and I just happened to mention to him that I am getting several brown patches on the skin what was it. His reply - Hydroxychloroquine. If it gets any worse we will have to take you off it. NOT A CHANCE. Ill suffer the brown patches.

There are pain killers they can give you for pain. Unfortunately, we are suffering with something the doctors are terrified of. They either dont understand it or have never heard of it. I have found this site wonderful. It has kept me sane just to know other people have the same as me and that if I have a rather peculiar symptom I just put it on the site and someone else will undoubtedly have it - I dont feel so alone.

I have glucoma but since ive been on the antimalerials it certainly hasnt got worse. I just have to have my eyes monitored once a year.

Best of luck and keep us all posted. Regars Diane

[Binkey]

I have to inject myself with Methotrexate and have to take folic acid.I also have Reynauds in my hands.Mostly this helps but,my hands are the major problem.All Lupus patient's vary of course.I hope you get help.