new member with pregnancy questions
34 yrs old and diagnosed with Lupus in Dec 2006. 5 yrs ago I was hospitalized with lesions in my lungs. Diagnosed with Wegeners Granulamatosis. High doses(800mg/day) of Prednisone and Cyclophosphamide. Started to get better within a few weeks. My diagnosis was later changed to BOOP. My rheumatologist warned of Lupus but wanted more symptoms. Lived pretty well for nearly 5 yrs.
In Oct 2006 had bad flu, high fever and when I thought I was getting better I crashed. in one day my hands and feet felt like they were on fire and walking on glass/cut. My spouse had to carry me I was in so much pain. It was so sudden. Felt like poison in my veins. My muscles were sore and I was exhausted. My blood work was positive for Lupus but very low. Given my physical symtoms, rashes, photsensitivity, joint inflammation and BOOP I was diagnosed with Lupus.
I have been on Prednisone for 6 months and Plaquenil for 4 months. I'm doing better but feel I have reached a plaeau. I can get around a good few hours out of the day but have not been able to do things with my spouse like I could before, skiing, biking, running. I own a retail business and am using most of any energy I have on that.
We have no children and my spouse is worried that if we do he will be doing all the work. Is there anyone out there that has managed to balance a career, flareups and a family successfully. Not getting younger and need to decide if we can have a family. I don't want to burden him anymore than he already is.
I read that high doses of Prednisone and cyclophosphamide can result in a lengthy remission of upto 5 yrs. That sounds like what happened before. Is there anyone with similar experience? Want to know if I will ever be in remission like before wihout those meds.
Thank you for your time. Merrigold
Hi, Merrrigold. Unfortunately, it's hard to predict who will be able to achieve remission, even with medication. Some people will become mostly symptom-free; for others medication makes the symptoms manageable but doesn't control them all together. Lupus is such an individual disease - every person's experience with it is different. Personally, I've been on high dose steroids (IV Pulse) and cytoxan off and on for several years - mostly on - and while it controls my most serious problems, kidney and neuro involvement, it has not produced a remission or done much for the everyday symptoms. But again, everyone's experience is different and it is possible this treatment would produce a remission for you again. Generally, treatments like high-dose prednisone and cytoxan are reserved for life and organ threatening disease because the treatments themselves can have serious and potentially fatal side effects. Fortunately, there are more treatments available now than there were even six years ago - so hopefully your doctors will be able to come up with a treatment plan that controls your symptoms. It can take up to six months to feel the maximum benefits from plaquenil, so it may not have kicked in fully for you. But if plaquenil doesn't work, there are other options, sometimes it takes some trial and error to find the best combination for you.
There are quite a few of us on the board who work and have children. I don't think any of us would tell you it is easy, and we all have different ways of managing. And I don't want to discourage you, but your doctors will probably not recommend pregnancy until your lupus is fairly stable. So this is something you really need to discuss with your doctors before making any decisions.
I know how frightening it can be when you are first diagnosed and learning to deal with this disease. Please feel free to come here when you need to vent, or ask questions, or share your experiences. And welcome - we are very glad you are here.
Thank you for answering my questions and fears. It helps to know there are people out there that truly understand what it is like to go through this. It can be lonely and scary at times. You've lifted my spirits and I know I should feel grateful for the improvements I've made. I feel hopeful that there is still more positive things to come with Plaquenil.