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Living with Psoriatic Arthritis (PsA)

PsA and SLE Lupus Overlap

My neurologist mentioned that my neuropathy may in fact be SLE Lupus, concidering that besides the systemic neuropathy, I also have Raynaud’s. I have been dx’d with it a few years ago, but it was later changed to PsA. I read that there could be overlap between PsA and SLE Lupus, though it is not that common. My neuropathy has been getting worse, used to just be in the feet, it is migrating up to my waist.
I have tested positive to ANA three times, though it was not very high numbers, also a weak positive to anitibodies that cause kidney rejection. The two times it was tested, two years apart had the same numbers, so likely not a false positive.
They say that treating both of the diseases are difficult because the biologics can make the Lupus worse, and hydroxyclorquine can make PsA worse. I did had a lot of pain reduction with hydroxyclorquine, but my previous Rheumy took me off it, saying it would make PsA worse, though it seemed to just be helping.
I will see what he came up with at the end of the month.

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That makes things a bit more challenging @Jon_sparky.

My neuropathy seems to be associated with Sjogrens. There’s just so much overlap of symptoms, challenges with treatment and so on when dealing with multiple autoimmune conditions.

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That was my thought, that it is caused by Sjogren’s, I have a very dry mouth, and my skin is like parchment, I will ask him about it. I thought the symptoms of dry skin were from my hypothyroidism, and the dry mouth was from medications, but I wake up with my tounge stuck to the roof of my mouth, it is all very unpleasant. Most of my tingling neuropathy in my legs and sometimes back, arms and neck happens the first hour or two in the morning, but sometimes at other times. My feet and hands are always bad.
With Sjorgen’s, do you also have Raynaud’s?
I get burning erythromyalgia in the summer, and freezing hands and feet in the winter, allways thought it would be better reversed!

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I’ve had Raynauds since I was a kid. The dry eyes started in my late twenties or so and I had to give up contacts at that point. The dry mouth started with a bang maybe 6 years ago. I thought it was need related except for just how dramatic it was. My mouth was on fire and looked damaged.
I take a med that increases saliva production. Without it I just can’t sleep. I’m so dry that I can’t swallow and will wake up panicky bc of it. I have to drink constantly but my mouth is still dry without it. I think it’s probably protective of my teeth as well. The neuropathy started with a bang as well.

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Thanks, that is how my mouth feels. I use the drymouth mouthwash, that helps some. I will bring it up with my Rheumy next visit. Did you get the saliva meds from the Rheumy or GP?

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From my rheumy. There’s two meds that I’m aware of. In both cases some one might work better than the other, and some might complain of too much saliva. I wind up taking it twice a day instead of three times and it seems to be my happy balance. Okay, I might drool on my pillow sometimes, but it’s so much better than the alternative.

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Seems like the Remicade infusion yesterday made my leg neuropathy way worse, I was wondering if this could be Lupus flaring? It was either that or all the sugary electrolyte drink I did to help my vein collapsing problem. My blood sugar was 190 when I went to bed last night, today it was up at 130. I am pre-diabetic, so I normally shun sugar and starchy foods.
I had a fasting blood test in the morning, it caused a bad flare, slept all day today, with neuropathy and joint pain.

Hi Jon and Stoney. Thought I would jump in with some additional things that are helping with my severe dry mouth. I use XyliMelts (OTC) - a little disk that sticks to the inside of the cheek or on the gum line and helps lubricate and moisturize, stimulating saliva and helping with prevention of tooth decay. I use them during the day and at night. My dentist is concerned about chronic severe dry mouth and the acceleration of decay because of the lack of saliva to protect the teeth. He prescribed a RX toothpaste called PreviDent 5000. Before bed I brush with my regular toothpaste, spit and rinse, then rinse with a drymouth rinse, then brush with the PreviDent and spit only. This is helping protect my teeth. I still wake up a time or two during the night to put a XyliMelt disk (sometimes 2 at a time) in my mouth also. The dry mouth problem is annoying during the day but especially difficult at night because it disrupts sleep and damages teeth!

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Thought I would also mention my high ANA counts - 1:640 and then 3 months later 1:1280. So far we (my rheumy & I) are contributing this, the severe dry mouth, worsening dry eyes, skin, and hair loss, to a TNF drug-induced Lupus reaction to my high dose Remicade treatments. 700 mg every 4 weeks of Remicade has been the most helpful of the 8 biologic drugs that I have used so I am very sad that I had to go off this treatment. I have used Remicade for several years. Three different times I went off it to try another biologic at my doc’s request to see if we could achieve better results, but returned to the Remicade each time. My last Remicade was in April 2018 and I am struggling to get any good result now with Stelara. I just doubled the dosage of Stelara with my last injection to see if that will help more. My two high ANA results came in May and August 2018. ANA is normal again now but the dry mouth, eyes, and skin continues. I had a salivary gland lip biopsy last fall to determine if Sjogren’s was a culprit but the biopsy was inconclusive - and I am NOT doing it again LOL! All this fun - sometimes it is super hard to handle, right?

And finally a thought about leg neuropathy - it is sometimes associated with the DMARD leflunomide (Arava). My daughter tried to use Arava but the neuropathy got so bad she could not feel her feet or lower legs and had to go off the treatment. And, it cleared up completely when she stopped it’s use. I have used Arava for many years and do not have that problem. I wonder if other DMARD’s can cause neuropathy also? Something to check into if it is a problem.

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That’s really interesting @psghetti. I’m sorry you’ve had such a rough go with drug induced lupus. I was tested for this a few months ago but it appears to not be a factor.

Super interesting thought about leflunomide and neuropathy. No one has ever mentioned this to me, and I’ve been taking it for five years now, I think.

I did try xylimelts and the super protective toothpaste. The toothpaste is helpful to me, but ultimately I found that I needed meds for the dry mouth. But thank you for bringing this up. I know a lot of people get good results from this

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You know the conversation about dry mouth perked my ears. I have extremely dry mouth. So bad I keep water around me and drink constantly. Waking up with no moisture in the mouth is not cool. I mean I can’t even talk it gets so dry. The dry eye thing is hard to tell–allergy season but I need to pay attention. I have always had skin issues so that is hard to say. Any other markers to watch for?

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Not taking that DMARD, just MTX and Remicade. I have had neuropathy for 32 years, but this is more extensive then the stocking and glove areas that I had for years.

That is a lot of Remicade infusions, they won’t give me that much, at least my insurance would not pay for it. Had a bad flare yesterday, less then a week since my infusion…

I have used Biotene mouthwash and yesterday picked up Biotene Dry mouth spray, great when I am on errands. It only lasts a short while though.

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Today was the worse flare in awhile, woke up with bad paresthesia (prickly skin) in my legs, back and arms, for about 2 hours, severe fatigue lasting for about 8 hours, and painful joints and hands. The neuropathy symptoms were the hardest to deal with, no way to relieve the feeling of needles and pins… I would think this is how MS feels like, but I have very good balance, so don’t think it is that.
Hope my Neurologist will have some answers, besides special diets. He will probably blame it on Fibromyalgia and shrug…

Went to see my GP, he wasn’t much help about the suspected Sjogrens, when I asked him about Lupus, he thought that it might be likely, though my blood work ANA was not that high.

Jon, I hope you get some answers regarding your health. What you are describing is extremely dreadful. I am sorry you have to deal with that. Have you tried the nerve pains meds like Lyrica? It did not do much for me but it is supposed to help that by calming the nerves. My pain levels are helped by opioids. My pain was not effectively controlled by Lyrica but I am not dealing with nerve pain maybe.

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No, tried Gabapentin and Lyrica, and even Cymbalta, had a lot of side effects like brain fog and blurred vision, did not help with the pain. Nasty stuff…

Oh Jon, you are seriously going through an awful time aren’t you? The biggest of cyber hugs.

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It can only get better from here! :sweat_smile:

Let’s hope so!

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So sorry to hear your news, my younger sister has both psa and fibromialgia and her rheumy told her to refer to neurologist too. Keep on hoping for her to stop vegan approach.and opt for lchf diet which got all of my symptoms improved. All the best, let us know how you progress

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Jon, I to had bad reactions while on Lyrica. Cymbalta did not have much affect on me either. I gave Gabapentin a go for a short time but that did not do much either. Seems like all of them dulled me to some extent, well except Cymbalta