Anyone with Lupus about?

[blossomtree323]

I've been having problems with joint pain and fatigue for years, diagnosed with CFS and Fibromyalgia.

After I spoke to the rheumatologist this morning, he's put me on a drug that is primarily used to treat Lupus. My bloodwork is showing underlying inflammation and my body is attacking itself (their words). Bloodwork from a couple of years ago showed something simular but they didn't do anything then.

This has come completely out of left field and I don't know what to make of it. The drug I've been put on is Hydroxychloroquine.

If anyone has Lupus and takes this, did it help? How does having Lupus impact on day-to-day life? I already claim PIP and haven't been well enough to work for a few years.

@FuzzyPuffling vast majority of positive experiences on this thread of a drug that causes life changing improvements with negligible side effects. Why not try it for three months?

Fuzzy Getting a definite answer in the realm of SLE and rheumatology is not a normal thing - so many conditions, all overlapping, so many incomplete bits of information and patient profiles.

I would query the manifestation of your lupus? Mine is joints, I know I need it. My concern would be what if yours is quietly going along its merry way causing organ damage whilst you feel ok and don't take any medication. My grandmother died of a brain haemorrhage. Her disease weakened the walls of her blood vessels and she died suddenly in the 80s. Treatment and disease monitoring has moved on a lot since then of course but it's easy to forget this disease can be fatal.

Grausse 200mg a day. The max I can take at my weight is 300mg.

Mm you're right "grausse", I ought to try it. I think the fact that it takes so long to work puts me off a bit, and also access to rheumatologist. If I got side effects or wanted to discuss things, it's hard to speak to an expert. The hospital is 50 miles away and I only have an appt once a year. I feel I'd be on my own and I don't fancy that much.
And I don't feel ill enough! Some fatigue ( I go to bed early), Reynauds, varying joint pain, but not usually debilitating. And poor kidney function, but no one is sure why.

I was on Hydroxychloroquine for connective tissue disease but ended up with Drug induced liver injury from it, so had to stop taking it. I think this is rare though.

200mg a day, 400 every forth day.

The strange thing is that joint pain isn't my main symptom - fatigue is. I think that's why I was when he said he wanted me to take HCQ. Then again, my joint pain has been really bad for the last fortnight, I've been feeling really shitty and I accept that HCQ may be very beneficial. I had a food intolerance test two years ago and I cut out all my intolerances (dairy in my case) and my joint pain decreased by about 80% which was wonderful
@honeysucklejasmine There are so many overlapping conditions aren't they? I've been told I have CFS and Fibromyalgia which are very similar. Mind you I've had pain in my joints since I was 17 and I'm now 38. I'd quite like a firm diagnosis!

Getting a definite answer in the realm of SLE and rheumatology is not a normal thing - so many conditions, all overlapping, so many incomplete bits of information and patient profiles.
^^This is so true. Frankly I'm beyond caring what lable they put on it if the treatment works. The original diagnosis I got was palidromic rheumatism but it's evolved into sero positive RA.

The drugs don't reverse damage already done. My finger joints will never be straight again but the joint damage won't continue as long as the disease is under control.

@FuzzyPuffling My hospital is a 45 miles away. However once they started me on drugs I was given access to the Rheumatology specialist nurses. They talked me through the original starting of the drug and they have a helpline to call for advice. I have spoken to them dozens of times this year all by phone though never needed to in the previous five years. Usually they can give advise and they can speak to the consultant if necessary. Furthermore my rheumatologist has always said he would see me if needed.

@blossomtree323 fatigue is is also one of my symptoms. HCQ helps with that. In fact I'm like a duracell bunny now I've got it all back under control.

I have inflammatory arthritis too so can be difficult to distinguish pain between the two. But I don't think the pain from the Lupus is that bad? (Like you the fatigue is far worse but the Hydroxy massively helps). Unless I've been in the sun or I'm suffering from an infection etc. And both conditions affect the tendons and ligaments, so I can get pain anywhere, eyes, jaw, ears, neck, ribs, wrists, fingers, knees, ankles, toes!

How are you with heat? I'm terrible if I'm in a room which is over hot, I am ill for the day, feverish, malar rash, fatigue. And how are your nails etc? Raynaud's?

Everyone is right that there are so many conditions that overlap and symptoms can differ from person to person.

Persevere with the Hydroxy, it could very well work for you. And if you have new symptoms investigate them. So if you get rashes get referred to Dermatology or Photobiology. When did you last have bloods done? Get them done again. Ask specifically for ANA and Anti Phospholipid/ Anti Ro, Lupus Anticoagulant etc. Others on here might help you with more tests.

@loveyoutothemoon I'm OK with sunshine, but if I'm out in it for too long, I feel awful for days afterwards and I find humidity hard to cope with.
My last bloods were done a fortnight ago. Nails are fine, but I do have a problem with regulating my temperature, if I get too cold, it takes me ages to warm up again, especially at night.

I have discovered that cold water really helps my painful joints. I suppose it has an anti inflammatory effect. Fortunately we live near the sea and go in often (between May and November - I'm not that stupid!) and it has really really helped.

I don’t have Lupus but I have Sero Negative RA (although imo my symptoms are more Lupus than RA). I’ve been taking Hydroxychloroquine for 5 years and like a PP it’s been a bit of a miracle drug for me. No side effects at all (and I usually react badly to medication) and it’s drastically changed my life. I’m a TA so on my feet all day as well. When I was first diagnosed I was on 2 tablets a day which has now reduced to 1 tablet a day as my symptoms reduced.