Could Lupos medication help me?

[snadra]

I was diagnosed with Fibromyalgia in 2010. Various blood tests over the last 18mths have shown Lupos. They re-test and then it shows normal. This has happened 3 times now. How can the specialist say that it isn`t Lupos because I don`t have a rash and the sun doesn`t affect me? I have all the head to toe pains in muscles, but also pain that seems to be in the bones. I have brain fog too. I can`t walk very far, and struggle to stand still in one place. I twitch and my hands+feet feel blown up when resting.. I don`t seem to have flares, moreover it is continuous. My back almost went the other week and I couldn`t stand upright, so had to use a crutch. At the moment I am on my recliner sitting on a rolled up quilt for padding, as my backside is truly fed up of being sat upon!!! Does all this ring true with you Lupos sufferers and am I missing out on any meds that would be beneficial. I take tramadol, diclofenac, amitriptyline, mertazapine, paracetamol and calcium/vitamin D tablets.

[saranne]

It sounds complicated and I am not a doctor... but not having a rash or obvious sun problem does not rule out lupus if the bloods show it. My rash is very slight! Which tests were done ?

Fibromyalgia was my first diagnosis and you can have it alongside lupus. I think the main difference is that the fibro muscle pain is not stopped by steroids because it is not autoimmune disorder, which lupus is. The amitriptyline is probably to help you sleep and to change your perception of the pain.I have it from the fibro days. The diclofenac you take can cause gastro problems well they did for me, so watch out for that!

For me the addition of lupus brought the severe joint pain and stiffness and losing lots of weight and dry eyes, cold fingers, migraines etc which tend to go with lupus. You are being prescribed strong painkillers including two anti depressants but still in pain, so if the blood tests were positive- I think the anti DNA antibodies is the key one - I'd go back to doctors and try to see a lupus expert, are you near London?

The first Lupus drug to be given is often hydroxychloroquine which you are not on.

Were you low on Vit D that can cause physical problems, but also seems to be common with lupus.

Having said all that when my bloods had not yet shown lupus the fibro could be so bad I could not walk down the garden path and slept for ever... so not to be underestimated!

You have my sympathy its frustrating when you don't know exactly what is going on and I was once told to stop exaggerating!!

[snadra in reply to saranne]

I don`t know which blood tests were done, only that they take an armful each time and divide it into half a dozen phials. My vitamin D and Calcium levels only showed low about six months ago. You`re right though, I should ask to see a lupus expert. I need to be more assertive. Since I finished 6wk physio course for 3rd time, I don`t see anyone - Just keep taking the tablets!!!! As a lady I could have retired at 60 but I enjoyed my job and intended to stay until at least 65. However these problems have put paid to that idea. I now only have the energy to go out once or twice a week for a few hours. I`m 63 and I haven`t worked for the last 16mths. Mustn`t grumble though, a lot of sufferers are unfortunately a lot younger.

[Voutton]

Hi there reading with interest your post If you google lupus and fibro I think you will find that it is unusual for fibro to develop lupus but lupus sufferers can develop fibro Never heard of a lupus patient that was not sun sensitive and not all lupus patients have the classic butterfly rash that tends to be discoid lupus , although a lot of SLE patients have skin rashes not just on their face but all over. Mouth and nose ulcers are another indication with lupus When I am going to have a flare I have ulcers and and a sore throat Great indication that I need total rest. The sun can cause a flare as well and needs to be avoided . Hope some of that helps take care

[snadra in reply to Voutton]

Thanks for you`re interest. The pain and fatigue have forced me to give up work as it is pretty much 24/7. However, I have recently spent a month in Egypt in constant sunshine with no adverse affect apart from a few bruise-like marks on my legs and a cold sore on my lip, which I do now tend to get when on holiday. I`m afraid it was googling fibro that brought me to this site because I found that an awful lot of fibro sufferers were also diagnosed with lupos, as does saranne who also replied to my question. My only worry is, without wanting to sound melodramatic "what can happen to my major organs if not treated correctly"

[saranne in reply to snadra]

Hi, I was told by Dr. D'Cruz at London Lupus centre not to worry about the sun in my case. I think there is a blood test which indicates when its likely to be a problem. Although to keep out of sun is standard advice. The fibro I had for 10 years before lupus was diagnosed probably in the absence of anything showing in blood tests. Was and still does mean muscles are sore to touch and the fatigue etc can be attributed to either or both! Also have ulcerative colitis so that can cause similar joint problems. My understanding is that hydroxychlorquine has been shown to have a role in preventing further serious problems developing. However older people at diagnosis seem to be less likely to have major organ involvement.

You can ask for a print out of the blood tests, in the end its all best guess stuff!

Although the anti-dsDNA when strongly positive does indicate lupus.

A lupus expert will give the best analysis and hopefully reassure you,

good luck

[Voutton]

Hi you will only be treated. For your organs when they develop a problem They cannot give you meds to prevent lung heart or kidney involvement With me it was my heart which along with other things meant me giving up work . So I would. Not worry about anything that has not happened .I you live a good life and follow a healthy diet then it is all you can do . Your doc will help if you have a flare and really look after yourself listen to your body and rest when needed I read up so much on lupus and I'm sure everyone else diagnosed has done . One thing is to try and stay mobile it is so easy to give in and want to do nothing but a lot of little baby steps can help Take care