[Machak]

Hi, I'm a male in his 40's. I was diagnosed with lupus after 10 years of mystery illnesses after being hospitalized with right diaphragm paralysis and pneumonia. Diaphragm had been stopping and starting off and on for years. Slowly other symptoms like pleurisy, joint pain, dry eyes/mouth, face rashes, etc built up until they put the lupus label on it...

I've been working the last year with an almost continuous flare and have been trying to fiND a medication that can keep me from needing to use high steroid doses, but minimal luck so far. On my third immunosuppressive option, and if this doesn't work then it is on to the IV meds.

How long did most of you work at it before finding a medication (or other alternative) that worked? I'm running low on work leave these days, and afraid if I don't find something soon I may lose the job.

 

[x_claire_x]

Hi Machak...sorry for what brings you here, but glad you found us. It takes on average around 2/3 yrs to get the right mix for each individual....having said that, I was heading for IV chemo to sort my symptoms out ....when I enrolled in a drug trial... I was lucky that it came along when it did............. they still don't know whether the worst of the autoimmune attack on my lungs would have calmed anyway but I have felt so different since the trial there is no doubt in my mind it was key to me rediscovering the essence of who I am.

What have you tried so far that has failed ?..............Claire

 

[Machak]

Hi Claire,

Let see, so far I've been through varying levels of: plaquenil alone, prednisone, medrol, plaquenil and medrol, those two plus imuran, plaquenil aND medrol with cellcept, all at ever increasing levels. Currently at 2500mg on cellcept on the way to 3000, and if that fails it is off to the next drug. What trial did you go to? Finding something that works on helping the lung would be a major improvement.

 

[x_claire_x]

The trial was discontinued but the drug company were running 2 similar drug trials, and although mine was pretty successful, they opted to take the other drug to the next phase... I was invited to go on it, but am not as bad and I didn't need to put a whole load of new stuff through my body .

I am on Cellcept, plaquenil and low level of steroids....usually !

I can pm you all the info on the drug company but the name of the drug was sifalumamib.......if I have spelt that correctly (doubtful. ). That should lead you to the drug company etc and the info on the new trial.............there is a site that shows all the current trials in the UK.....if you google it up, it should make quite interesting reading...not sure if you are in the UK ? But they may be something similar where you are, as they are always looking for victims...oops I mean volunteers :0)

I don't think there is a specific lung drug...it is usually just a case of trying to calm the SLE down so it stops attacking whichever part of you it prefers.....a lot of MCTD sufferers and schleroderma suffers carry a degree of pulmonary fibrosis.

I hope they manage to get your meds right for you................Claire

 

[Jessica1]

Hi Machak,
It's worth remembering that lupus is a recognised disability so your employers should help you to stay in your job. This should include not having to use your leave while you stabilise your condition or being penalised for having time off because of it. Of course not all employers consider this so readily so it might take a bit of discussion on your part.

I hope that your meds are sorted soon so that you can reach a stage where your symptoms are stable.

Take care.

 

[Machak]

Thanks all, unfortunately I'm not in the U.K., and the rules/access to care are "a bit different" here to say the least... we keep pushing through where we can though. I think I'm going to have to try something else shortly because the flare keeps getting worse even though we increased cellcept to 2500.

 

[Machak]

Just a quick update... moving on from cellcept to methotrexate. Hoping it will make more of a difference.

 

[Penny Mathieu]

Thanks all, unfortunately I'm not in the U.K., and the rules/access to care are "a bit different" here to say the least... we keep pushing through where we can though. I think I'm going to have to try something else shortly because the flare keeps getting worse even though we increased cellcept to 2500.

FMLA, Department of labor.

Unless they can dismiss you, for a real reason. You can get unemployment.
That's discrimination.

Department of labor will investigate and help you find other employment.

GA isn't good with a lot of things, but finding resources and answers aren't.

The work place, required, posters and in the employee handbook, have all the information you need to get the ball rolling.

Start your other options while you are following up, employer and you keep your records and hopefully the MDs.

Good luck from ATL

 

[Penny Mathieu]

You can start or do all of this online, they don't want another person in their office