Any ideas....

[Squeeshy]

Hi guys haven't posted in a while but need some new ideas....

This is getting me really down lately been flaring on and off progressively for over a year...been on steroids up and down for a while......have lost 2 jobs because of various medical problems....with still no answer to most of them.....currently on oramorph for pain as well as ampytriptyline and gabapentin for never pain apparently still no better tho.....finding it harder and harder to cope with stairs because of the pain in my chest causing horrible breathlessness and the pain in my back and lower joints.....and unfortunately am not in a financial position to move.....just in a bit of disarray at the moment and am happy for any suggestions to help.......cause finally on a reduction plan for my steroids and don't particularly want to up them again if avoidable I just feel like I'm losing my whole being.

[Purpletop]

If you keep flaring like this, you need to be on an immunosuppressant. You haven't mentioned whether you are on any of the ones usually prescribed for lupus. If you are on one, ask for the dose to be increased. If you aren't at all, then do ask to be put on it.

None of us really want to be on these drugs, they are awful. But when the disease gets irritated to the extent that it attacks continuously, then life is put in jeopardy and what's more important than that? Steroids are a short term measure, you need to be on a stronger, more targeted drug for at least a year for it to make a difference.

The chest pain and inability to breathe - have your doctors checked for pericarditis? It is the inflammation of the pericardium (membrane surrounding the heart). As it is a rigid membrane and doesn't move out to accommodate the inflammation, it pushes onto the heart, so the heart has less room to work in. That causes the difficulty breathing and the chest pain and sometimes a rub against the chest wall. Get that checked. An ECG will show abnormal pattern but an echo will be able to check whether there is fluid between the pericardium and the heart. The good news is that the treatment is taking anti inflammatories and no other fancy drug.

Having said that, the chest pains and breathlessness in the absence of pericarditis could also be a side effect of the steroid withdrawal. You might be reducing too fast, so the body doesn't like it. If you don't want to go up again, you must be very careful coming down. You don't mention the dose you're on and how quickly you're reducing. But under 7.5 mg the reduction becomes difficult and under 2.5mg it gets really tricky if you've been on steroids for a long time. At that point the reduction must be extremely slow, usually by reducing the dose by the smallest amount possible once per week for a month, then twice a week for another month and so on.

[Squeeshy in reply to Purpletop]

Currently taking MMF..had pft test done and ecg currently waiting for my echo and an appointment with the respiratory medicine team as they keep rearranging my appointment...my list of medications are just becoming longer and at 22 it's like there's no light...

[dawnbeaven]

I had this and docs said I had diverticulitis am having colonoscopy this week to confirm

[misty14]

Hi Sqeeshy

Just want to say I'm feeling for you as I've got similar nerve pain , taking the same drugs as you and finding it hard at the moment to get relief!. It's hard to cope with as it's such a demanding pain on top of our illness problems!. Are you being seen by a Pain Clinic?. Worth a thought if your not as they can offer different treatments but I'd imagine you are as your taking Oramorph?.

Hope you feel better just knowing your not alone. You've had a good reply from Purpletop re chest pain so I just hope things improve for you soon. X