I was prescribed a short burst of steroids so that we could confirm that the remainder of my symptoms were in fact lupus and not being caused by other stuff. The Dermatologist prescribed 20mg a day for two weeks and then 15mg for a week, then 10mg for a week and finally 5mg for a week. This is with a view to starting an immune suppressant at my next appt on July 19th. I guess it's a final tick box for my Dermatologist to justify such a strong medication when my bloods show nothing but I am still suffering.
I have a diagnosis of SCLE from blood tests and symptoms in October/November 2013 and finally a biopsy on the rash on the nape of my neck this January - which again confirmed lupus. I have noticed that doctors write a mix of SLE & SCLE in my notes. But despite being on hydroxy since my diagnosis - so for 2 1/2 years now I was experiencing increasing flares and more debilitating symptoms. I had extremem fatigue, bursitis in my hip - the worst pain I have ever had and I've already had surgery on my hip and my headaches/migraine/myalgias were frightening. When I went on the steroids I had also been experiencing diarrhoea for 5 days - which is a normal symptom for me but hadn't lasted that long in the past. On top of all of this I was quite down - not sure if that was a direct symptom or as a result of how I was feeling. I even decided to hand my notice in at work as I felt that I was drowning and needed to slow down for myself and my families sake.
Anyway, the steroids didn't have an over night effect on me. I did notice that I was awake longer at night but it wasn't until week 2 that I could really see the difference. I haven't had a day time nap for 12 days. 12 days!!!!! I usually have a daily nap or lie down. That alone has made a difference to my family life. Last Saturday my husband suggested at 9pm that we watch a movie together and I usually scoff and head off to bed, but I stayed up, watched a movie and went to bed at 11pm. I haven't been to bed before 10pm this week! I have spent time with my family. It is the best feeling in the world. I am me again. No naps, no fatigue, more energy, no headaches, no diarrhoea. My skin is good, my hair is good, my nails are good. I still have my hips pains from the osteoarthritis and the odd twinge in my knees and back - but I can cope with that.
My belt on my jeans is 2 holes tighter too. My feet have gone down further. And I am still convinced that I have a minor form of vasculitis and water retention. So although most people put weight on with steroids I think I look thinner and people have complimented me on my weight loss. How strange?
Of course my fear is now the tapering off the steroids, the side effects kicking in and most of all going back to quite frankly the shadow of my former self once again. This last week I have cleared out my children's bed rooms and have a pile of stuff for a car boot sale tomorrow - something I haven't had the energy to sort out now for years. My house looks good, the kids are happy and my husband is over the moon.
Can I feel like this long term? Or am I being teased? Am I hoping for too much. The hope. The expectation. The disappointment. Lupus is a cruel disease.
Diagnosis - SCLE, hayfever, dust allergies, pet dander allergies, osteoarthritis both hips and knees, varicose veins, slight hypermobility.
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Wendy39
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Really pleased for you Wendy39.Enjoy this time. Don't let it be spoilt by worrying about the future, although I know this is easier said than done.
It's a reminder that you are still you & the tiredness and other symptoms are the lupus & not who you are. The wolf will always be with you, but he needs putting back in his basket, and it looks like your dermatologist is going to help you do that.
I think the constant tiredness & weakness is one of the most difficult things to cope with & everything else seems easier to deal with when you have your energy.
Oh I am so pleased for you, it's brilliant isn't it to finally feel well again, I understand after only recently having a steroid injection and feeling like a new person....with regards to wearing off and it going back to the way it was before, which was one of my fears my dr said it won't go back to the same place as before but will probably have another injection with some tablets. Long may it continue for you, please keep us updated...
Sometimes after you have been on steroids for a short time it sort of puts your immune system to sleep, so after you are off them you feel better. Sometimes a low dose of prednisone can help. I've only been on Methotrexate of the stronger drugs. I felt a lot less pain, but not the energy that is so nice when you are on prednisone. But prednisone is a temptress, since the long term side effects are nasty. It's good to have though if you are having a really bad time, and sometimes to sort out what is inflammatory and what isn't.
By the way, I also lose weight on prednisone, but when I tell doctors they look at me like I'm crazy. Oh, well!
I is nice to feel like a human being again, isn't it?
I've gone from 7.5 to 4 mg. Occasionally, I go up for a few days. I'm going to 3.5 soon. That is over about a year and a half. I've had to go up occasionally for bad flares.
I take strontium citrate to protect my bones and with it I went from osteoporosis to osteopenia.
So pleased to hear your having a well deserved respite and isn't great to feel what a bit of health & energy feels like again. Hope it keeps up you for a while especially as summer break for the children is almost upon us. Seeing my dermotalogist this week hoping for a better experience than my last visit 7 months ago... Here hoping yours doctors ares on the right track happy days. ML
Hi Wendy, wow how you sound as happy as me after the steroid injection I had 6 weeks ago. Went to see specialist today. He decided that he wanted me on 5mg maintenance once a day, no going up and down on the steroids so as not to give me lows and highs. My Hydroxy, Dihydrocodiene, Amitripyline and various others for other conditions is not good enough so the steroids should help me if not he wants me to go onto Methotrexate which I am not keen on.
Right everything you have said is exactly the same, my skin and nails are the best they have been in years, I can now walk my dog during the day, which I couldn't before, I can garden including digging which I couldn't before, I feel alive, I am happy, not snapping at the hubby for once. I have a list of what I want to achieve around the house, clear my wardrobe out, I have bought some new close (Shush don't tell my husband) and yes I have lost weight but not sure knowing my luck I will put on weight with the oral ones, going to watch what I eat as my face is already chubby. I have even thought about doing the decorating around the house rather than pay a professional. (More money for clothes)
There will be people on this forum who say that the steroids mask the pain, that's the idea so we don't have so much pain but what the heck I feel free to do almost anything. My specialist said it will only be a worry staying on steroids when I am in my late 70's early 80's the Vit D3 2000iu a day will help protect along with the calcium, I took 60,000iu a week for 6 weeks.(I have osteopenia)
Don't let anyone rain on your parade girl, enjoy yourself and take the time out to do fun things with the family.
I understand your headache/Migraines I too suffer always looking for new remedies.
Hi Wendy39 , I was on a boost of steroids 30mg, like you gradually reduced, I felt best ever my old self, it was great, wish it was forever. My lupus had flare up, skin really bad, Prednisolone help but being reduced my skin clearing up again ,so now back to 25mg then gradually reduce over several weeks, so will feel great again. As you say we will notice a big difference when back to 5mg, will feel deflated again. I understand that we can't be on them long for our bones, but I would rather have quality life now rather in my 70 / 80s which may not be here anyway. Hugs to you xx
Thanks for your reply molly19. It sounds like you've had a positive response to steroids too. Are you on any other medication? Are you sun sensitive? I am going on holiday in August, to Italy for 2 weeks and am wondering if I should push for some steroids to take with me, in case I need some help when out there.
Yes I'm on prednisolone , azathioprine, hydroxyquine, doxycycline, citalapram, and yes very Sun sensitive, faster 50 all year round.
Isn't it brilliant feeling like this wish it was forever. An amazing drug, skin still angry but that's only 3 days in on my second boast of prednisolone. We're going camping on Monday 4th so I should feel good . No harm in asking but my specialist not keen on me getting them at all as I have issues with my bone density. Wish you all the best ( new woman indeed ) me too the way we used to be me 35 years ago. I'm 52 now. When do you go on holiday. Hugs x
It's a difficult balance isn't it. I have osteoarthritis in my hips & knees. Recently had an MRI on my back and I have an appointment to see rheumy to discuss that on Friday. I know steroids aren't good in those dosages and/or long term but they do make such a big difference to our quality of life, here and now. 14th August were off. Enjoy your camping trip & stay well. By the way, I'm 41.
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happy days. ML
Left Rheumatologist appointment in floods of tears! Support needed :(
Cutaneous lupus
Feel very demoralised
SCLE atypical rash?
