Sensory changes

[SCS23]

Hi,

I've just found this group having recently being diagnosed with Lupus. Ive got many of the symptoms and whilst I'm taking lots of medication don't seem to be feeling any better.

The neurological changes are proving to be the biggest challenge, especially the sensory changes to my face. If there is anyone who is experiencing similar symptoms or has any advice I'd be grateful for help or suggestions.

Thanks, Sarah

[Paul_Howard Partner LUPUS UK]

Hi Sarah,

What treatments are you currently taking and how long have you been on them?

Hopefully there will be others who have experience of your symptoms and are able to share them with you.

If you need any more information about lupus and LUPUS UK, we have a free info pack which you can request or download from our website at lupusuk.org.uk/request-info... and we also have our full range of publications available to read and download at lupusuk.org.uk/publications/

[SCS23 in reply to Paul_Howard]

HiI've been taking Hydroxychloriquine for 6 months 200mg twice daily; Methotrexate 20mg weekly ( just started injections this week) started that about 2months ago.folic acid once weekly. Been on prednisolone for 5 weeks, 40mg for the last3weeks. Think that's all apart from my thyroxine and painkillers.

Hope that paints a better picture !

Thanks

[Paul_Howard Partner LUPUS UK in reply to SCS23]

Thanks SCS23 ,

Have you had a referral to a neurologist yet to have these symptoms investigated?

[SCS23 in reply to Paul_Howard]

Yes I've seen a neurologist and had nerve conduction studies which confirm sensory changes. The neurologist is leaving treatment up to my Rhematologist i.e. Steroids .

[happytulip]

Can you describe the sensory changes to your face? Also what neuro symptoms are you having? I've had neuro problems too but without knowing what specific symptoms you are having I wouldn't like to comment. Happy to help if I can know more x

[SCS23 in reply to happytulip]

Hi,

At first my face felt tight on the right , I thought my skin was very dry so bought a super duper moisturiser!! Then it got numb on the inside and outside, including my teeth and gums.When I touch my face it feels like I'm doing it through a blanket !! The right side is also a bit puffy.Ive also got multiple numb areas in my torso and arms but they don't cause me too much bother .

Thanks for your interest .

[Hidden]

I have struggled with sensory neuropathic issues for about seven years now. My face is one of the worst affected parts. I have primary Sjogren's although I was initially diagnosed and treated for RA five years ago so used to take the drugs you are presently on too. They seemed to chase off the RA symptoms but I'm not sure that they helped much with the neurological symptoms. Well at least I think Methotrexate worked well but Hydroxy may even have worsened the neuropathy. Anyway I couldn't tolerate them or two others finally so am now not taking any rheumatology meds.

My neurologist says that there is probably no immunosuppressant treatment that will help for my neuropathy although, she agrees it is Sjogren's related and immune mediated.

[SCS23 in reply to Hidden]

Thanks for your reply .Its interesting that you think Hydroxychloriquine made your neurologist symptoms worse ! I do wonder wether all the drugs actually help or hinder .My joints feel better but that could be steroids I suppose.

Can you explain how your face is affected? For me that's the worst bit and I'm constantly aware of it .

Thank you

[Hidden in reply to SCS23]

I know that, in my own case, that chemical sensitivities account for a great deal and, having been hospitalised twice last year because of a fourth DMARD medication which caused pancreatitis, doctors are understandably wary about treating me in this way now.

Both my neurologist and rheumatologist keep saying it's a balancing act for all patients but in my case it's a tight rope!

My facial problems are a constant source of concern to me but, as they continue to relapse and remit in severity, and they are pretty much the same in my peripheries, I've accepted the neurologist's diagnosis of small fibre polyneuropathy with mild gangliopathy -all as part of my Sjogrens.

Mainly the sensation consists of patches of numb tingle around my face, starting in lips and gums and leading up into my nostrils and eye sockets.

Sometimes, as with feet and hands, there's a scalding sensation in my gums and lips and my gums feel infected and swollen - but there's nothing to be seen for the most part.

It all started seven years ago as heat waves in my wrists and upper arms. Then my soles started burning and then the RA/Sjogrens started up bilaterally, especially in my knuckles and fingers and wrists, elbows, shoulders and knees. Methotrexate got on top of this inflammatory arthritis after about a year - especially once I started injections plus Hydroxy added in. It has never returned as extreme joint pain abs stiffness of this type.

Around the time I started Hydroxy the pins and needles arrived in my arms and legs. I stopped Hydroxy after 18 months because it finally gave me a slow anaphylaxis. Then I stopped MTX because of the pins and needles and because I was getting so sick still after two years. The pins and needles still rage on and I can't tolerate any of the symptomatic treatments.

Last year I was assessed for GCA vasculitis after a particularly bad episode of painful tingle in my face. But two neurologists have agreed that it's actually a small fibre polyneuropathy (non length dependent) and now I am rediagnosed with primary Sjogrens, which my neuro tells me affects 20-50% of SS sufferers neurologically in this way - although mine is particularly extreme and widespread I think. It causes disequilibrium and I topple if I turn my head in any direction.

Many with RA, Lupus and Sjogrens get TMJ affecting the face. Many with Lupus and Vasculitis suffer from certain types of migraines that have symptoms other than headaches. Hope this helps in some way.

Feel free to describe yours here on your post though as it might be quite different to what I and others are experiencing?

[maggielee]

Hi Sarah what are your sensory problems? Real curious something new to me and one to be aware of. Ml

[SCS23 in reply to maggielee]

Hello,

I've got sensation problems in one side of my face and ear and also multiple areas on my arms and torso .Its not painful just numb and that includes the inside of my mouth too which can make eating difficult,

Thanks

[Freckle1000]

I have SLE and it (indirectly caused) some peripheral neurological problems (ie spine and connecting nerves) - very very different symptoms to yours - more of a weird balance thing for me. But I do have a slightly knumb left arm.

When I say indirectly. The SLE attacked the lining of my stomach, which stopped me absorbing B12, and this deficiency caused spine and nerve damage via de - myelinisation. This is how weird and complex things can get. (bit rare this one)

What you're describing sounds fairly full on and something that shouldn't be just left to just float.

I 'definitely' wouldn't leave it up to your Rheumatologist alone to figure out whats going on.

I'm hoping you've had an MRI of your brain and spine ? Also hoping your neurologist did a heap of blood tests, perhaps even a Lumbar puncture ?

Most of us here have more than one specialist because of the multi organ involvement of SLE. I'd strongly advise you to find another Neurologist. I had to see three of them before I got a proper diagnosis regarding my problems.

For me I've also found a very competent Generalist specialist to help figure out what's going on inside my body - Good for Lupus and just random normal person problems.

Definitely don't give up until you have a clear answer as to whats going on !