Does anyone with RA have any of these problems? - NRAS

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Does anyone with RA have any of these problems?

JAnnT profile image
7 Replies

Diagnosed with RA over a year, after 6 months I went down hill, barely walk, I have a large hiatal hernia severe gastroesophageal reflux I take lots of meds. Right now I feel extremely sick to my stomach, nauseous, bad head aches, anyone else have these problems? Looking into a implanted simulator has anyone had luck with this?

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JAnnT profile image
JAnnT
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7 Replies
helixhelix profile image
helixhelix

What kind of stimulator? I’m only aware of ones for pain, as trials on vagus nerve stimulators have yet to be used for RA. And tackling pain won’t stop the disease progressing.

What meds are you on, and have you tried? If these aren’t suiting you have you discussed alternatives with your medical team? And are you on stomach protectors?

I’m sorry you’re still struggling, but push your doctors hard to help you.

oldtimer profile image
oldtimer

What medication are you on? Many of them are associated with nausea so it may be worth stopping one at a time to see which one? There are medications too which tackle the central effects of the nausea, but it would be better to find out what is triggering it if you can.

JAnnT profile image
JAnnT in reply tooldtimer

Esomerprazole, Nucynta, predisone, Hydroxychloroqine, Methotrexate injecton, trazodone, cymbalta, cyanocobalamin injections, gabapentin, sulfasalazine, folic acid.

medway-lady profile image
medway-lady in reply toJAnnT

Could be the PPI and Ratinitide is back on the shelves now so might be worth asking GP for a different PPI.

nomoreheels profile image
nomoreheels

It sounds as though you're not going well at all JAnnT. What is your Rheumy take in your Symptoms? Seems as though you need a treatment plan discussion, that's what I'd request.

I take you’re also under Gastroenterology? If not please do ask your primary care provider to refer you.

Not sure which stimulator (or simulator?) you're meaning. Is it the Vagus Nerve stimulator, which it's hoped may be an potential option for those who don't respond to traditional meds? I don't know about the US I'm afraid but here in the UK tests are still ongoing.

JAnnT profile image
JAnnT

I thought it was just my polyneuropathy-pain, numbness, tingling. I was getting worse than I was use to and my neurologist ran a lot of test and referred me to my Arthritis specialist I still have a hard time telling the two apart. He also says I have Fibroneuralgia.

I have an appointment with a Gastroenterology in April, it was the soonest available time.

It's the Boston Scientific spinal cord simulator. I looked on the computer and seen they had others, but I don't know if I can chose from them or just the Boston one. They do a temporary one first to see if it helps, if it does they will put the permanent one in. My husband talked to a man at my last RA appointment. He had his for a year and had it removed because it wasn't working. He is now on a pump and I don't want that.

I

Diamondpainting profile image
Diamondpainting

Hi JAnnT. I am in the process of being assesed for a spinal cord stimulator due to failed spine surgery. I believe that it can help relieve some joint pain. I was refferred two years ago, had my first appointment January 2019 and have just recieved an appointment for next week (my 2nd appointment) so it can be a long process. Obviously, I have had a lot of time to research (ok - Google) SCS and have been a member of several UK FaceBook groups. I have become very sceptical about this done as there only seems to be a 50/50 success rate and even then you would never be 'pain free' it just dampens pain, I am also worried about more invasive surgery now that I am on RA drugs. It was septacemia that caused my RA after my last spine op. You need to go with your instincts on this, maybe a group such as Spinal Cord Stimulator UK (FB group) could answer some of your questions. Good luck with whatever you decide!

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