Newly diagnosed

[mollyaimee]

Hello all,

I’ve only recently been diagnosed with SLE (around 5 weeks ago now) and so I’m slowly coming to terms with everything it brings. For the past 2-3 years I’ve had episodic joint pains but always brushed it off as nothing, but since I had a viral infection in January, the pain turned to constant pain and I began feeling more fatigued.

After having numerous blood tests, countless doctors appointments, 2 cancelled NHS appointments and finally 2 fantastic private Rheumatology appointments, I finally have an answer to why I was feeling so bad!

At my first rheumatology appointment I was given a steroid injection (which took majority of swelling away) and was put on 5mg daily of prednisolone. After the second appointment (about a week ago now) I was also put on 200mg twice daily of Hydroxychloroquine as more of a long term treatment as well as the pred.

Over the past couple of days I’ve had a really strange sensation in my legs which almost feels like a pressure build up/mild dead leg and I feel like my legs could give way at any moment if I’m standing for too long.

Is this normal? Sorry for the long post but wanted to provide a little backstory! Any information would be appreciated!!

[whisperit]

Hello mollyaimee,

Glad to hear you feel positive about having found some answers, but you may not be surprised that I can't explain your new sensations. You have just started hydroxy and pred, so one would automatically register that as a possible cause. However, hydroxy is generally well tolerated and the typical side effects tend to be things like gastric upsets and - much later, and rarely - related to damage to the retina (that's why we should get our eyesight checked periodically when we're on hydroxy). Your pred dose is low (our bodies normally produce about 7.5 - 8mg of natural steroids every day) , so that again doesn't ring any particular alarm bells for me. I guess I can only suggest the usual generic advice - monitor how things are progressing and talk to your doctor promptly if things don't improve or if you are worried. Sorry I can't be more specific. x

[Zb2006]

Hi mollyaimee, my story mirrors yours...I could of written this post myself! Iv not started the hydroxy yet tho - I’m seeing a rheumatology nurse next week before starting to take it. But I too get this sensation in my legs. So I’d be interested to find out if others do & any tips to help. I seem to get it in different severities & im suffering really badly at the minute with it, to the point I can’t walk a few steps up the stairs without having to rest.

[Chanpreet_Walia LUPUS UK]

Hi Mollyaimee,

Welcome to the LUPUS UK HealthUnlocked Community!

We published a blog article with a section discussing what to do for those newly diagnosed - I hope this will be of help to you lupusuk.org.uk/getting-diag...

It is important to remember that it takes time for the medication to work. Hydroxychloroquine can take up to six months to exert its full effect. To learn more about lupus and medication, read our factsheet at lupusuk.org.uk/wp-content/u...

Have you discussed the sensation in you are experiencing with your doctor? Discussing this with your doctor ensures you receive the correct advice, treatment and possible referral to a specialist. It is important to bear in mind that lupus presents differently in each individual, therefore, no two people with lupus will share the same exact experience.

Please let us know how you get on, wishing you all the best.

[ChantelF]

Hi mollyaimee

Absolutely. Some nights I wondered whether I'd be able to get up the next day.

My pain was like pins and needles and felt like my legs were boiling 😲

On meds for four months now... Things are slightly better.

Good luck and hang in there 🌻

[mollyaimee]

It’s so nice to know that other people are experience the same thing! Even with a condition that fluctuates so much between different people it is reassuring to hear other people are going through the same things! I’ll keep you all posted to know how it continues