Just got a lupus diagnosis.

[Sthe]

Hi. I have just been diagnosed with LuPus and I am new in the group. Reading your stories gives a hope that I am not on this alone. I am on Prednisone and hydroxychloroquine. Looking forward to sharing my experiences with you.

[Spanielmadlady]

👋 welcome Sthe. 🤗

[rosebud52]

Hi, I am also new to the group, it will be good to share with those who understand what you're going through.

[amc282 in reply to rosebud52]

Welcome

[CecilyParsley]

Hi there and welcome. People here are so wonderful and will help you feel less isolated, give great advice, sympathy, empathy and love. We also have a lot of cuteness and laughs along the way xx

[Kismetsoul]

Welcome Sthe

[amc282]

Welcome

[Fighting]

Unlike you Sthe, I have had systemic lupus since I was 36. My 1st son was born in 1979 and was at term but still turned blue in the infant nursery. I had my 2nd son in 1984. This was 2 years after my 2nd son was born. I was 23, and at the University of Michigan in a masters in Social Work program when I was diagnosed with discoid lupus. As it was discoid lupus, there were no issues with having children. I am now 70 and deal with the side effects of both drugs. I have serious bone issues, fractured my pelvis in a fall on ice. I have had hip replacements due to avascular necrosis. The left one was done twice. The limp which I had after the first hip replacement became worse after the 2nd. I sat on a kidney unit for a month while the staff waited for my temperature to come down. I had 1 round of cytoxin, once a month for 6 months, to shock my kidneys into functioning. I have had my shoulders replaced due to avascular necrosis. The bone issues are due to prednisone. I needed cataracts removed at age 64. As soon as I turned 65 and I could pay to have them done, I did. My eyesight still is not good. I have multiple issues with dry eyes. Some if not all of this is due to the placquenil.

You do not say how old you are. I wish you the best but being on these drugs long term presents problems. I maintain that the disease and other issues cost me a marriage and an engagement. I believe that women stay with men after a serious diagnosis rather than the other way around.

[rosebud52 in reply to Fighting]

So sorry to hear about all you have been through, I was diagnosed with Sjogrens and Oesteo arthritis in the early nineties, I have grown up daughters and grandchildren who are a blessing, I was on 8 Prednisolone at the beginning of last year and am now down to one a day, my Renal doctor is hoping to take me off them completely I have an appt with him next week so I'm waiting to hear his decision on whether I stay on them or not. I am 68.

[Sthe in reply to rosebud52]

Wow. You are giving me hope. I am 33 and have got two children ( 1 and 3) and I m really worried if I Will live long enough to see them grow. I am currently on 6 Prednisone+ 1 hydroxychloroquine per day. Its good to hear you are getting better. All the best on your next appointment.

[Sthe in reply to Fighting]

I am 33 and have been on planquinil for 4 months and Prednisone for a month ( 6 per day) . The long term side effects worries me now. I am seeing my Dr on Monday and hoping for the best.

[Fighting in reply to Sthe]

Let's hope that your life does not have the stressors that I have had. My best to you.

[rosebud52]

Welcome X

[rosebud52 in reply to rosebud52]

Good luck seeing your doctor on Monday hope all goes well for you. x

[Sthe in reply to rosebud52]

Thank you so much.

[Fighting]

The doctor I had the longest just retired. I am hoping for the best with my new MD. He is a Dr. Ziuadin. He was friendly enough, with more direct questions than my previous MD.

[Allydee]

Hi - I was diagnosed in may and started hydroxychoroquine 6 weeks ago and I’m now on my 3rd lot of prednisone as it was getting really difficult to go up and down stairs. My energy levels have definitely improved but still frustrated as I’d hoped to be symptom free ... I know it takes a while for the drugs to take effect but now that I’m more alert I want to do more!!! So good to see a supportive community - I’ve been really down and looking forward to feeling better