Lupus neuropathy treatment?- prickly all over

[poseymint]

Hello everyone. I was diagnosed last year with Lupus/Sjogrens. I have many symptoms- mostly mild, that come and go, aches, fluish, chills, internal trembling, silent migraine, low platelets ITP. But one of my most irritating symptoms is Lupus neuropathy. I get prickly sensations from head to toe like being bitten by small insects- yikes! plus itchy, cold patches, prickly mouth. I also get angioedema which is a swelling of the tongue and lips, thankfully not often, but I believe the swelling and prickly feelings are somehow similar. It can begin with a prickly feeling then begin to swell.

I have a wonderful rheumatologist who is smart, kind and validating, but she wants me on more drugs which I am resisting. I am now taking 300mg Plaquinil daily, plus weekly injections of Nplate/romiplostin for low platelets.

Any similar experiences? Any good treatments you know of for Lupus neuropathy? My rheumy wants me to take methotrexate but I don't know if its the best drug, plus side effects. thanks and good health to all!

[Hidden]

Hi there. I have no remedy suggestions unfortunately but I do have very similar symptoms to yours as part of my Sjögren’s so I just wanted to sympathise.

Regarding treatment I have tried both these medications on their own and together - but sadly I couldn’t tolerate them. Although the Methotrexate might have done if I had been able to tolerate it at a higher dose. But finally it made me feel too sick, even by injection. But then I’m terribly drug intolerant. Even a low dose of Hydroxichloraquine finally gave me hives and made my lips very swollen.

I also get the horrible burning/ prickling lips and gums - all part of the all body small fibre neuropathy I am told. Some find drugs such as Gabapebtin helpful but I couldn’t tolerate these either 🙄

[poseymint in reply to Hidden]

thank you for your reply, its very helpful! Yes, I read of other people who cannot tolerate Methotrexate due to the side effects, nausea, infections, strep throat etc. Hydroxy gives me tinnitis but not so bad, it helps the Lupus. My neurologist suggested supplements- turmeric, magnesium, alpha lipoic acid, coQ10, VitB2. Turmeric and magnesium were bad for me (though do help some people). Turmeric caused bruising as I have low platelets and turmeric inhibits platelets. Magnesium binds with Plaquinil so causes a flare. I quit all vitamins after that except Vit C which seems to help prevent bruises.

[Hidden in reply to poseymint]

Sorry that the vitamins etc didn’t help you - but amazed at how enlightened your rheumatologist must be to suggest them at all! I have been recommended Tumeric and Magnesium on forums but both upset my highly sensitive guts.

[kingsnorth in reply to Hidden]

I have lupus and sjogrens l get muscle spasms charlie horses icepick headaches burning legs and pins and needles l hope its all part of my lupus or sjorgens because im due to see neurologist to check for MS which frightens me.

[Bakbre]

Hi there

Your description of small insect bites is correct - it feels like electric shocks all over doesn't it - it is truly awful. Thankfully most of the time I was only getting in my feet and legs. My rheumy who is usually very good didn't seem to be interested and told me that there was nothing she could give me for it and suggested that I take Vitamin B Complex! After putting up with it for a while and being thoroughly fed up with the pain and not sleeping I finally went and saw my GP who said that he would refer me to a Nerve Specialist although there would be at least a 6 month wait but in the meantime he gave me a prescription for Pregabalin 100mg 3 times a day. He also decided to increase the steroids (Prednisolone) I take back to 20mg a day for a week decreasing by 5mg every week until I get down to 5mg again. I was on a the Prednisolone already, and was down to 6mg a day from 20mg decreasing 1mg every 4 weeks when all this flared up.

He said he thought that by about a week I should be feeling a lot better. He was right, after 2 days the insect bites/electric shocks had calmed down, not disappeared but significantly decreased so at least I am able to sleep.

Resisting drugs is very brave of you but sometimes this illness doesn't take into account bravery and we all need some help sometimes and if drugs gets your symptons under control, take them. You can always come off them at a later stage when you get your flare up under control again.

Anyway I hope this helps and you start to feel better.

[poseymint in reply to Bakbre]

thank you! that is very helpful. I took 10mg prednisone today just to get through work. Feel better. Will email my rheumy now and see what she advises. she also has mentioned a short taper of pred works for a flare. best to you and thanks!