I was diagnosed with lupus in March this year. My blood test show that I am positive for SLE and Mixed Connective Tissue Disorder. I am not sure if I have more than one autoimmune disorder.
Symptoms I experience daily:
livedo reticularis, pain in my shoulders, ribcage, back muscles, breast bone, hands, knees, feet. I get swelling in the ball of the foot; my whole right foot is painful while on the left foot I get pain and sweeling on the ball of the foot and heel pain.
A lot of tendon pain as well. When I walk sometimes the pain and sweeling moves from my feet to my knees than back to my feet again and then both my feet and knees hurt. My rheumatologist says it is the immune system ‘travelling around my body’.
Sometimes I get a strange feeling like something is ‘tightening’ and ‘stiffening’ my legs and other times like something is released in my body and feel fine for a very short period of time.
Initially I was put on hydroxychloroquine but I had an allergic reaction to it. I am currently self-injecting methotrexate, and the dose was recently increased to 17.5mg but I don’t feel is helping.
I asked for different medication but my rheumatologist is reluctant to do it because of my stomach problems as any other medication will be tablets but prednisone was mentioned as an addition to my methotrexate.
Although the intensity of the pain varies it is always there and it is just getting too much.
Anyone been on prednisone therapy for lupus, how long and did you experience side effects?
Has anyone switched to different medication and found relief?
Thank you for reading my story.
Written by
kali9
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Hi kali, can’t give you an answer to your question I’m afraid other than, have you given the medication time to work effectively? It can take a few months for your body to stop ‘flaring’ and settle.
It’s a bit hard to say about your pain, as everyone is different. I have continuous pain that is manageable until my body decides to go into overdrive and then I might need either antibiotics or steroids to help settle it again. My doc is reluctant for me to be on steroids permanently because it can cause problem like all drugs can. I know some on here take steroids ongoing, which varies in strengths.
Maybe discuss it with the consultant and ask if he thinks it would be beneficial to try short term and see how you get on? Also is the pain being caused by lupus/ MCTD or is it something else?
I have been on Prednisolone since I was diagnosed with Lupus 20 years ago and have found it very helpful and easy to take. To begin with you may have a rush of energy resulting in you ironing at midnight, or cleaning out your cupboards. But that doesn’t last long. Then you may find you are putting on weight and this could be difficult to control until your daily dose is 5 mg or less. Lastly, in the long term you could find your skin becoming thinner and just a few months ago I was diagnosed with osteoporosis despite taking calcium supplements daily and biophosphates weekly. However, the good news is that, as far as I am aware, patients are no longer prescribed steroids for a lengthy time so hopefully would not have the long term effects I have had. Perhaps, before making up your mind, you could ask your Rheumatologist what dose you would have to take and for what length of time. I started on 40mg per day 20 years ago and over the years this was reduced to 5 mg per day which I still take. I have also been taking a tapering dose of Azathioprine along with Prednisolone.
I am sorry you are suffering so much pain and hope that you will soon find the right medication to help you.
Hi Ellenkay55, Thank you for your reply. I was on Prednisolone for a month while waiting for the methotrexate to start to work. Yes, I will ask for what length of time they want me to be on prednisolone. Did they ever offered you biologics?
Hi Chris21, Thank you for your reply. I have been on methotraxate seven months. I guess the pain is from having lupus. I never had those pains before. What else do you think could be the cause of the pain?
Pain is probably caused by lupus but possibly neuropathy may be in the mix or arthritis? Lupus doesn’t seem to pick on just one area, it does like to visit the whole body in various ways 😄.
You would think 7 months of medication would start to settle your pain? I’m not an expert or taken methotrexate so don’t know what to expect.
Hopefully you’ll get something that helps settle your pains.
My Dad has been taking Prednisolone for over ten years. He tries to be on a very low dose, around 2mg a day, but when his skin gets bad, he finds that an increase in dosage helps. He has temporal arteritis, lupus and MGUS and the Prednisolone works for all of these, so he can't come off them totally. He is now 91 years old and so I don't think the steroids are affecting him too badly
Hi scool, I guess 2mg is very low dose. I wonder whether I had temporal arteritis. Last year I ended up in emergency because I had complete vision loss. It had happened on multiple occasions and one night I went to emergency. This is before I was diagnosed with lupus. The doctors focused on my family situation, my relationship with my husband (nothing wrong there he is been wonderful) and one of the doctors suggested is psychosomatic. Well to cut a long story short this year I was diagnosed with lupus. This is only after my physiotherapist suggested you need to have blood tests something else is goin on. My brother has wegener's granulomatosis and he had a lot of side effects with Prednisolone. I guess everone is different.
Hi, I agree. My father seems very tough He found out about the temporal arteritis because of extreme headaches. I don't know if that applied to you or not.
Hi, yes I have bad headaches. They come and go. The neurologist said it is migranes but they will do MRI scan. He did not seem concerned so I will probably have to wait long time for the MRI.
Hi, Sorry for the delay in replying. It was just the really bad headaches I believe - and the fact that he was experiencing pain in the temporal area. Sorry that I can't be more helpful. I experience really bad migraines myself [they often make my sick as the pain is so bad] but I have never been told that my pain was anything more than a really bad headache. But that pain is usually at the front of my head [over my eyes].
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