Figuring things out - first year since diagnosis

[CGSLE]

Hi, I'm posting here as I don't know anyone in real life with lupus and have been struggling to work out what my expectations should be in terms of symptoms.

I was diagnosed just over a year ago following about a year of strange symptoms - GI issues, weight loss, Raynaud's, mouth ulcers, hand and wrist pain and swelling, unexplained fevers, chilblains, hair loss and funny rashes. Had strongly positive ANA, dsDNA, some of the antiphospholipid antibodies, and a few other random antibodies like rheumatoid factor etc, and this led to the diagnosis.

Since then I have been on hydroxychloroquine and prednisolone, did about 6 months of mycophenolate and then switched to methotrexate for better effect. I am still on prednisolone and when I try to reduce the dose the symptoms come back.

What I'm trying to work out is what is normal in terms of symptoms. I was expecting the treatment to fully sort things out and I have to say for the past few months since getting to a higher dose of methotrexate I have been feeling pretty well. However, I am still having at least a few days a month where I might need to cancel plans or call in sick to work, and will be absolutely floored by joint pains, swelling, fatigue, weird transient rashes, and just generally feeling like I have a flu. I also still get mouth ulcers and in between these more significant episodes I will very often have pain and/or swelling in my knuckles.

Can anyone share their experience in terms of how often they have symptoms? Some days I wonder what all the fuss was about and can run 10km, other days not, and I find the variability very difficult to manage both practically and emotionally.

thank you for taking the time to read this

[posthinking01]

Hi there - it is a very difficult issue Lupus - I have Lupus Nephritis which means there is kidney involvement - but I also have an autoimmune thyroid issue and adrenal insufficiency (Addisonian issues) which means I am on steroids for life.

Lupus I belief is an adrenal issue as well as everything else hence why the steroids etc. make you feel better but difficult to completely come off them as your body needs them to keep down the inflammation that is going on. Whilst I know you are desperate to be able to just be normal again once on the medication - this is possible but only if you understand what your body is trying to contend with.

Because the adrenal glands supply you with life giving cortisol/energy then putting an extra demand on the body which would then need to supply more adrenal hormone is not a good idea. Hence why one day you are OK then when you exert yourself you are floored the next day. You have to pace yourself and work out what you are going to be doing and try to alleviate the ups and downs by working out what you can or should be doing and what can perhaps wait until another day when you haven't put too much pressure on the energy levels in your body

I have to live with updosing my steroids because of adrenal insufficiency to take into account what I am going to be doing that day and this includes the weather changes and emotional issues which will affect my adrenal gland supply to my body. Luckily enough you don't have to do that.

My thyroid gland insufficiency was heavily involved in my Lupus issues so make sure you keep an eye on what is going on with the thyroid - but I daresay your medical team are doing that anyway.

Hope this helps. Please don't hesitate to ask is you need anything else.

[Ange324]

Hi CGSLE,I'm only ever an occasionally suspected lupus sufferer and verge on rheumatoid but never a firm diagnosis.

However, I do take prednisolone for aches and pains. Same as you, when I taper too low the pains in my hands and wrists are shocking and I seem to lose the ability to walk without limping in pain.

I've just tapered to 3mg and am waiting to have my cortisol checked at this dose. If it is near the bottom of the range, it would explain why at 2mg I'm in agony.

I do have chronic lymphocytic leukaemia and sjogren's syndrome, and the cll Dr doesn't want me on steroids. But my issue is that my liver ALT's are horrendously high as soon as I drop below 6mg of prednisolone. So I'm still under prolonged investigations for this. I'm sorry I can't help any more about the prednisolone, but even though I'm moaned at because of the life enduring harmful side effects of this drug through prolonged use, I'd rather have a life without pain for as long as that may last, rather than wonder if I'll be in agony in the space of an hour without the steroids.

My best wishes to you and I do know your pain and feel for you. Ange