What next....

[rubia88]

Hi,

I was diagnosed with SLE 5 years ago, and have had a couple of flares, however nothing too serious, so had previously coped without being on any medicine at all, or occasionally a 4/5 month stint on plaquenil.

Unfortunately in October last year, my lupus started flaring and i was put in Azathiprine, however i didn't realise how bad things were so after a couple of weeks on the meds i stopped taking them - i didn't like the side affects i was getting - dizziness, nausea, feeling like i was going to black out.

In January this year, i was hospitalised for extreme chest pains, was put on a high dose of steroids and plaquenil 400mg a day and told it was pleurisy. I managed to wean myself off of the steroids and kept on the plaqueil. I then was hospitalised again in March due to the same thing. I was put on 8 x 5mg steroids a day, 400mg of plaquenil and advised to start on mycophenalate 4 tablets a day increasing to 6 as we are simply unable to get the lupus under control- whilst on these tablets i managed to wean myself of the presnisolone.

Whilst on Mycophenalate i had a sore stomach constantly, numerous infections - one a week, hair loss, anxiety and generally felt upset and down. I stopped taking these tablets 6 weeks ago, as although the joint paint and chest pains had stopped, i felt the side effects i was having outweighed the benefits. Over the last week the joint pains are back, and i have a niggling pain in my chest so i know that the pleurisy is on its way back - this is obviously because the mycophenalate is nearly out of my system.

I have spoken to my consultant who wants me back on mycophenalate but i am not willing to go back on this drug, as it was ruining my life. I have been told the alternative is Azathioprine again, however i am sceptical as i am scared about the side affects and recurrent infections. Has anyone had hair loss on this drug? I am not very tolerant of medicines they seem to affect my stomach quite a bit. How long until people have seen results on this drug?

I feel like i have hit a brick wall as unable to get the lupus under control with steroids and plaquenil alone, so need something stronger, but the side affects i experience on the immunosuppressants are a big problem for me. Are there any alternative treatment plans people have tried?

I do not have kidney or liver involvement (thankfully) my main symptoms are rash on elbows (occasionally) severe joints pain moving round the body, and chest pain.

Thanks in advance!

[Hidden]

Hi - I have a diagnosis of RA rather than Lupus. I understand exact how you feel, having tried but failed to tolerate three disease modifying anti rheumatic drugs so far and several drugs for nerve pain as well.

I have not yet had my RA symptoms come back despite four months having passed since I stopped methotrexate. Although this is yet another drug you might get side effects to we are all very different in our responses and at least with Methotrexate you can take it by pill or injection - the latter might help get around gastro intestinal Issues you are prone to.

I know some do take it for their Lupus and it did work very well for my joint pain but it did eventually caused more side effects than I could bear.

However you can take it with Plaquenil at a huge range of doses between 7.5 and 25 mg - so I wonder if this might be the drug your rheumy considers next for you? However the chest problems may make this impossible. But I do know someone who takes it by injection for RA and Collitis and who does very well with it despite also having a lung disease.

[Ruth_lderry]

Hi nothing worse than going thru a hard time with lupus. I suffer with lupus and it's really attacking my kidneys but thankfully due to taking the drugs u r talking about my body seems to be coping ok(on a good day which isn't very often) but thankfully 4 that at least. Do u taking a tablet 2 protect your stomach aswell? Am very weak on the tummy too, but docs have me two tabs in morn to protect my tummy this stopped all my sickness feeling.. I find everytime my steriods come down thats when I get sick!! hope u get some ease soon.

Ruth xx