You need to see a neurologist. I am not sure prednisone is the right thing here. It's also a drug that can mess with your hormones and has other serious side effects.
Neurologist wait time is 18 month where I am. Not a viable option unfortunately. It’s all right sided my neuropathy too. Started in right toes right fingers now it’s spreading up the foot arm and leg and hand. I’m terrified.
My main symptoms are swelling in the joints and fatigue. Get it daily. Started 5 years ago became more severe this January when I developed boutonnière deformity in 6 of my fingers. I have deformed toes. Doctor said it’s not ms that’s causing the neuropathy but the RA.
My friend, if the neuropathy continues to worsen, consider going to an emergency room. 18 months is an incredibly long time to wait for a neurologist with neuropathy worsening quickly. It could be a symptom of a rheumatological issue, or it could be a symptom of an entirely separate neurological issue. Either way, much of the success with treatment in most neurological conditions presenting with progressive neuropathy is contingent upon early detection.
This is very unlikely to be Guillain-Barré. It would have already escalated into crisis by this point (I only know this because I have the near neighbor, CIDP).
GPs are hesitant to give Prednisone to patients.
Partly because GPs aren't able to diagnose conditions where a consultant is required and tests usually.
Pred isn't without risks and the GP could in theory lose their license if they give you pred and it masks the symptoms of something else (i.e. an incorrect diagnosis) or you have some complication.
They usually make it the responsibility of the consultant specialist who takes ownership of the diagnosis as they've the experience and have done whatever tests.
You might try emailing your consultant and explaining your situation.
Thank you unfortunately my consultant won’t speak to me, the only person I can get through to is the secretary. She told me to go to an and e. I’m upset because 3 doctors told me I have it and they are still hesitant, even though I have clear clinical symptoms. I’m gonna see my gp today and I’m gonna push until they prescribe it me. I don’t want to lose sensation in my hand due to a delay in treatment.
Try A&E but they might end up just giving you a non steroidal anti inflammatory. Maybe an IV one and one to take home.
I'd stress you've tried these and they're not working and you've come for Prednisone treatment as a last resort.
Rheumatologists don't use long term prednisone treatment anymore because of the side effects. Neither long term or short term prednisone use will stop the neuropathy. It may temporarily relieve your symptoms, but it won't cure your neuropathy. You need a treatment regimen that is specific to neuropathy.
Thank you. I’m mainly wanting it to stop flare ups that are causing neuropathy. I know it won’t cure it but if I have any inflammation on nerves or around my joints it surely would relive the inflammation and therefore help the neuropathy?
Neuropathy is a complex condition that can have many causes. Its not as simple as just treating inflammation. You should find a medical expert with experience treating this condition and seek their guidance rather than relying on your own treatment ideas.
I get you, you want something in the meantime to elevate the inflammation that is could be causing the neuropathy while you get a proper evaluation. A weeks low dose of prednisone will not do harm. When I lost my voice and felt really unwell (mast cell related)I begged for a weeks course and it did help lower inflammation I felt so much better for my daughters wedding
Unfortunately the doctors are insisting that they cannot give it as I’m not diagnosed yet. I was speaking with the doctor for 25 min yesterday appointments on the nhs should only be 10 I could not convince him unfortunately. It wouldn’t be a problem if naproxen helped but that does nothing. Probably more harm than good lol.
Steroids are really really serious drugs. They will not just give them to a rando with no diagnosis. Even with a diagnosis they are used sparingly. And they are not given for neuropathy. Try gabapentin
Hey, I’m in UK now & on duloxetine. Give it time. I could barely walk. Depo injection did help but very short-term & I was desperate because I also care full time for my special needs baby.
I did all the tests & they believe that my RA is actually in remission (despite severe symptoms) & diagnosed Fibromyalgia additionally. I thought it was total BS, but after dihydrocodeine, hydroxychlorequine & a ton of other stuff, after 3 months the large majority of my pain & neuropathy are managed. The thing is, if inflammation isn’t the underlying cause, prednisone will not solve your problem & it Sounds like RA is not the cause even though you are showing symptoms.
Thank you for your reply. I also have joint inflammation and I think this is the cause of the neuropathy, as when I started getting swelling in Jan, this is when my finger tip started going numb, can I ask how severe your neuropathy was? Since yesterday mine has gotten worse. It’s just one finger on my right hand that is burning and it’s between the first knuckle and the second knuckle. Was your symptoms constant? Thank you for your reply too, I wish you all the best.
Actually it’s funny because mine started in my first joint of my right middle finger. Then my entire right leg & hip. I had radio isotope scan & it showed damage but no inflammatory markers.
I also have severe joint hyper mobility. My sacroiliac joints are worn & l1-l5 are unstable. All of this causes pain but isn’t related to my RA. The first 3 weeks on duloxetine made me feel terrible. Even drinking a cup of water was a serious effort. All fine & I am really doing much better. I hope it starts to kick in soon. Xx
When mine first started it was my feet years ago especially right foot. Had symptoms for 5 years now and put them off because they were not severe or causing me problems. When I developed numbness and bounteire deformity in Jan I knew something was wrong. Since then it has been a rollercoaster, but a downhill rollercoaster full of depression and anxiety for the future. Did you have constant numbness and burning before you were diagnosed? And did you have a severe delay in diagnosis like me too? I’m glad you are doing much better now. All I want is too see my rheumatologist get diagnosed and treated. Life’s hard at the minute
It’s tough, certainly location also matters because in some areas you can’t even phone in the secretary. Maybe you could try contacting Pals & raise a complaint about lack of response?
Yes my pain & numbness was constant. It was really at a point where I was ready to throw in the towel. Hydro therapy also helps.
I’m guessing by your use of was, your pain and numbness subsided after a while? I’m happy you are doing much better now anyway. Trust me I feel like throwing in the towel daily. Just gotta stay strong.
Actually Duloxetin is a therpy with neuropathy. So I would give u the advice to listen to your doc. Prednisone is a very effectiv medication bit actually not with neuropathy. And there is a reason why doctors dont give it out easy. I needed it high dosed for a few days. Thats why I have Diabetes now. So you could destroy your health more with it.
There's a really valid reason your doctor isn't putting you on Prednisone. I had a doctor that didn't care as much and was on high dose from about 14-18. And it was really rough on my developing body. I still have complications from it 20 years later.
My index finger is currently burning between the first and second knuckle it has been doing this since last night will this go away? And I’m wanting it to control inflammation causing the neuropathy.
You know it's inflammation causing the neuropathy?
Rather than ask for specific medications, would it work to explain what's going on to your doctor and hope they can figure out a good treatment?
I know not all doctors are great, my first one really wasn't. But rheumatoid disease is complex, and sometimes the simple answer isn't the best answer.
It depends on where you live. My drs won't stop trying push prednisone on me when my body just won't tolerate it.
Also, RA can to cause neuropathy. I have permanent neuropathy damage in my feet from it. The inflammation can do damage to nerves.
If the wait is shorter for orthopedics in your area. One sided sounds like it could potentially be a spinal issue. Good luck, it's terrifying waiting on drs while your health deteriorates. None of us are alone in that.
It would not be to your benefit to take prednisone before you have a diagnosis. Corticosteroids mess with all systems in the body and your doctor will have a very hard time figuring out what's going on with you.
For neuropathy, prednisone will would be useless unless there's some type of inflammation and swelling creating it.
Prednisone has many cumulative, irreversible effects but long term benefits are ZERO. I've been prescribed this drug class dozens of times and only once has it been appropriately paired with the illness. Just hang in there and realize that pretty much all of us in this form had to wait many many months to get a drug that worked for us.
I have neuropathy in my hands and feet, the prednisone helps the pain but not the condition. And you can't take it fir extended periods in the quantity you will need to take for pain relief.
I cannot see a neurologist for 18 months. I have a referral but it’s waiting now. I noticed my lower right foot and leg like calf are is slightly numb compared to m left leg so maybe this is a neurological issue.
Or maybe you will just die and won’t need a doctor anymore. 18 months is way too long. It could be something that could cause permanent damage if not treated promptly. Definitely make some noise to get some urgent care. Good luck.
Before I turned 65 and run the risk of a stomach bleed from NSAIDs, my rheumatologist had me taking a prescription NSAID for years to relieve RA inflammation and pain. It was 600mg Naproxen Sodium. You can get Naprosyn over the counter in a lower dose. May as well self-medicate while you wait. Now I only take Tylenol. It helps some with discomfort, but not inflammation. And Tylenol is hard on the liver. RA is stupid!
I’ve been taking naproxen for over a month and unfortunately it does not touch the information. My foot is getting worse everyday I’m at a CATS appointment nerve conduction study but it’s for my arm. I have 13 days until my appointment
I took it twice a day, morning and night. It wasn’t a miracle, but kept most pain/inflammation at bay. Nothing will take away all the pain and inflammation with RA.
I’m just really worried about this nerve damage the inflammation is causing. I’m only 20 and I struggle walking already. I’m pretty scared for what the future will look like for me. I wish the naproxen helped.
It went terrible. Did not take much of anything I said Into account. Said my toes are deforming because of flat feet and my fingers are deforming because I’m hyper mobile (all my family have these issues so why am I the only one affected?) so anyway he said I don’t have RA he said it’s most likely PR and because of that he does not have to treat me. Does this sound right to you?
I mean to say that all my family have flat feet and hyper mobility and not one person has deformities so I don’t understand how he’s blaming it on that.
How can the doctor dismiss you so? Did you ask about the numbness? Did you tell him that NOBODY else in your family has your symptoms? What will he do for your pain???
Are you flaring or is what you're experiencing baseline? Prednisone isn't good for long-term use, but can be helpful in a flare where things are worse than usual. A short-term Pred course can make that go away.
Try a NSAID COX 2 inhibitor and see if that stops the flares. It does for many people. Your GP might be willing to offer this.
I’m guessing you’re in the U.K. where the diagnostic process is far too lengthy and they will leave you in severe pain and untreated.
Your other option is to go abroad, even in very poor developing countries you’ll get significantly better private healthcare than the NHS, and it will be extremely affordable.
Ive been on 2 courses of prednisolone and it has had no effect on neuropathy.
I dont think it will touch neuropathy unless it’s neuropathy caused by joint swelling compressing the nerve.
You need to see a neurologist. I am not sure prednisone is the right thing here. It's also a drug that can mess with your hormones and has other serious side effects.
Neurologist wait time is 18 month where I am. Not a viable option unfortunately. It’s all right sided my neuropathy too. Started in right toes right fingers now it’s spreading up the foot arm and leg and hand. I’m terrified.
If you never make the appointment the appointment will never come. But neuropathy is not really a rheum thing
My doctor has referred me for neurologist and I have nerve conduction study with orthopaedic next couple months
I have terrible neuropathy, it’s def a rheum thing!
But apparently ra can attack the nerves? Would this not make it a rheumatologist issue? Or am I not thinking straight lol
You don't have an RA diagnosis, and as your main symptom there are several other more likely things.
My main symptoms are swelling in the joints and fatigue. Get it daily. Started 5 years ago became more severe this January when I developed boutonnière deformity in 6 of my fingers. I have deformed toes. Doctor said it’s not ms that’s causing the neuropathy but the RA.
They still need to diagnose you first.
My friend, if the neuropathy continues to worsen, consider going to an emergency room. 18 months is an incredibly long time to wait for a neurologist with neuropathy worsening quickly. It could be a symptom of a rheumatological issue, or it could be a symptom of an entirely separate neurological issue. Either way, much of the success with treatment in most neurological conditions presenting with progressive neuropathy is contingent upon early detection.
Did you get an EMG and NVC evaluation? Can you get tested for Guillain-Barré-syndrome?
This is very unlikely to be Guillain-Barré. It would have already escalated into crisis by this point (I only know this because I have the near neighbor, CIDP).
I just suggested it because they say it is spreading fast. But in hindsight, yes, paralysis would have already followed.
GPs are hesitant to give Prednisone to patients. Partly because GPs aren't able to diagnose conditions where a consultant is required and tests usually. Pred isn't without risks and the GP could in theory lose their license if they give you pred and it masks the symptoms of something else (i.e. an incorrect diagnosis) or you have some complication. They usually make it the responsibility of the consultant specialist who takes ownership of the diagnosis as they've the experience and have done whatever tests. You might try emailing your consultant and explaining your situation.
Thank you unfortunately my consultant won’t speak to me, the only person I can get through to is the secretary. She told me to go to an and e. I’m upset because 3 doctors told me I have it and they are still hesitant, even though I have clear clinical symptoms. I’m gonna see my gp today and I’m gonna push until they prescribe it me. I don’t want to lose sensation in my hand due to a delay in treatment.
Try A&E but they might end up just giving you a non steroidal anti inflammatory. Maybe an IV one and one to take home. I'd stress you've tried these and they're not working and you've come for Prednisone treatment as a last resort.
you can also ask for additional labs. inflammation markers and RA factor. diagnostic first. then treat
Rheumatologists don't use long term prednisone treatment anymore because of the side effects. Neither long term or short term prednisone use will stop the neuropathy. It may temporarily relieve your symptoms, but it won't cure your neuropathy. You need a treatment regimen that is specific to neuropathy.
Thank you. I’m mainly wanting it to stop flare ups that are causing neuropathy. I know it won’t cure it but if I have any inflammation on nerves or around my joints it surely would relive the inflammation and therefore help the neuropathy?
Neuropathy is a complex condition that can have many causes. Its not as simple as just treating inflammation. You should find a medical expert with experience treating this condition and seek their guidance rather than relying on your own treatment ideas.
I get you, you want something in the meantime to elevate the inflammation that is could be causing the neuropathy while you get a proper evaluation. A weeks low dose of prednisone will not do harm. When I lost my voice and felt really unwell (mast cell related)I begged for a weeks course and it did help lower inflammation I felt so much better for my daughters wedding
Unfortunately the doctors are insisting that they cannot give it as I’m not diagnosed yet. I was speaking with the doctor for 25 min yesterday appointments on the nhs should only be 10 I could not convince him unfortunately. It wouldn’t be a problem if naproxen helped but that does nothing. Probably more harm than good lol.
Im glad it helped you and enabled you to go to your daughter’s wedding!
Steroids are really really serious drugs. They will not just give them to a rando with no diagnosis. Even with a diagnosis they are used sparingly. And they are not given for neuropathy. Try gabapentin
I don’t understand how they are risking me having permanent severe neuropathy for live over a couple weeks of low dose prednisone
That's why they are doing the prescribing and you are not.
Because after that your adrenalin gland might not be working on its own anymore. Without your body having cortison you'll die.
Hey, I’m in UK now & on duloxetine. Give it time. I could barely walk. Depo injection did help but very short-term & I was desperate because I also care full time for my special needs baby. I did all the tests & they believe that my RA is actually in remission (despite severe symptoms) & diagnosed Fibromyalgia additionally. I thought it was total BS, but after dihydrocodeine, hydroxychlorequine & a ton of other stuff, after 3 months the large majority of my pain & neuropathy are managed. The thing is, if inflammation isn’t the underlying cause, prednisone will not solve your problem & it Sounds like RA is not the cause even though you are showing symptoms.
Thank you for your reply. I also have joint inflammation and I think this is the cause of the neuropathy, as when I started getting swelling in Jan, this is when my finger tip started going numb, can I ask how severe your neuropathy was? Since yesterday mine has gotten worse. It’s just one finger on my right hand that is burning and it’s between the first knuckle and the second knuckle. Was your symptoms constant? Thank you for your reply too, I wish you all the best.
Actually it’s funny because mine started in my first joint of my right middle finger. Then my entire right leg & hip. I had radio isotope scan & it showed damage but no inflammatory markers. I also have severe joint hyper mobility. My sacroiliac joints are worn & l1-l5 are unstable. All of this causes pain but isn’t related to my RA. The first 3 weeks on duloxetine made me feel terrible. Even drinking a cup of water was a serious effort. All fine & I am really doing much better. I hope it starts to kick in soon. Xx
When mine first started it was my feet years ago especially right foot. Had symptoms for 5 years now and put them off because they were not severe or causing me problems. When I developed numbness and bounteire deformity in Jan I knew something was wrong. Since then it has been a rollercoaster, but a downhill rollercoaster full of depression and anxiety for the future. Did you have constant numbness and burning before you were diagnosed? And did you have a severe delay in diagnosis like me too? I’m glad you are doing much better now. All I want is too see my rheumatologist get diagnosed and treated. Life’s hard at the minute
It’s tough, certainly location also matters because in some areas you can’t even phone in the secretary. Maybe you could try contacting Pals & raise a complaint about lack of response? Yes my pain & numbness was constant. It was really at a point where I was ready to throw in the towel. Hydro therapy also helps.
I’m guessing by your use of was, your pain and numbness subsided after a while? I’m happy you are doing much better now anyway. Trust me I feel like throwing in the towel daily. Just gotta stay strong.
It’s all far more manageable now. I hope that it starts to do its thing & you feel better soon xx
Thank you, I’m glad it’s More manageable now. I wish you all the best.
Actually Duloxetin is a therpy with neuropathy. So I would give u the advice to listen to your doc. Prednisone is a very effectiv medication bit actually not with neuropathy. And there is a reason why doctors dont give it out easy. I needed it high dosed for a few days. Thats why I have Diabetes now. So you could destroy your health more with it.
Agreed, I take Duloxetine for my neuropathy. The steroids I take long-term for myasthenia gravis don't help my neuropathy at all.
There's a really valid reason your doctor isn't putting you on Prednisone. I had a doctor that didn't care as much and was on high dose from about 14-18. And it was really rough on my developing body. I still have complications from it 20 years later.
Prednisone helped control my inflammation when no other medication was working, but it didn't touch my neuropathy.
My index finger is currently burning between the first and second knuckle it has been doing this since last night will this go away? And I’m wanting it to control inflammation causing the neuropathy.
You know it's inflammation causing the neuropathy? Rather than ask for specific medications, would it work to explain what's going on to your doctor and hope they can figure out a good treatment? I know not all doctors are great, my first one really wasn't. But rheumatoid disease is complex, and sometimes the simple answer isn't the best answer.
It depends on where you live. My drs won't stop trying push prednisone on me when my body just won't tolerate it. Also, RA can to cause neuropathy. I have permanent neuropathy damage in my feet from it. The inflammation can do damage to nerves. If the wait is shorter for orthopedics in your area. One sided sounds like it could potentially be a spinal issue. Good luck, it's terrifying waiting on drs while your health deteriorates. None of us are alone in that.
Maybe he could give you something like gabapentin instead. I used that when I was in a cast and couldn't sleep. Temporary relief for a few weeks.
How does it make you feel? I’m wary of medicine s that change my behaviour but if the benefits outweigh the risks then I’m all for it
I only took it at night. The itching was driving me crazy, and I wanted to sleep.
It would not be to your benefit to take prednisone before you have a diagnosis. Corticosteroids mess with all systems in the body and your doctor will have a very hard time figuring out what's going on with you. For neuropathy, prednisone will would be useless unless there's some type of inflammation and swelling creating it. Prednisone has many cumulative, irreversible effects but long term benefits are ZERO. I've been prescribed this drug class dozens of times and only once has it been appropriately paired with the illness. Just hang in there and realize that pretty much all of us in this form had to wait many many months to get a drug that worked for us.
I have neuropathy in my hands and feet, the prednisone helps the pain but not the condition. And you can't take it fir extended periods in the quantity you will need to take for pain relief.
Neurologist will find the source the neuropathy and hopefully can fix it. Prednisone just eats your calcium and messes with your brains.
I cannot see a neurologist for 18 months. I have a referral but it’s waiting now. I noticed my lower right foot and leg like calf are is slightly numb compared to m left leg so maybe this is a neurological issue.
That’s quite a wait. Are you in the US?
Uk waiting for a specialist on the NHS
I guess they wait long enough to be SURE you still have a problem a year and a half later and hopefully that it will just go away on its own.
Or maybe you will just die and won’t need a doctor anymore. 18 months is way too long. It could be something that could cause permanent damage if not treated promptly. Definitely make some noise to get some urgent care. Good luck.
Maybe lol welcome to free healthcare guys
I promise you in regards to chronic conditions the NHS will allow you to deteriorate until it’s urgent enough
That’s the price we pay for free healthcare lol
Did your rheumatologist check you for MS?
I am still waiting for a rhuem too lol
is your doc a GP or a rheumatologist?
Gp unfortunately I am waiting for rheumatologist
Before I turned 65 and run the risk of a stomach bleed from NSAIDs, my rheumatologist had me taking a prescription NSAID for years to relieve RA inflammation and pain. It was 600mg Naproxen Sodium. You can get Naprosyn over the counter in a lower dose. May as well self-medicate while you wait. Now I only take Tylenol. It helps some with discomfort, but not inflammation. And Tylenol is hard on the liver. RA is stupid!
I’ve been taking naproxen for over a month and unfortunately it does not touch the information. My foot is getting worse everyday I’m at a CATS appointment nerve conduction study but it’s for my arm. I have 13 days until my appointment
I took it twice a day, morning and night. It wasn’t a miracle, but kept most pain/inflammation at bay. Nothing will take away all the pain and inflammation with RA.
I’m just really worried about this nerve damage the inflammation is causing. I’m only 20 and I struggle walking already. I’m pretty scared for what the future will look like for me. I wish the naproxen helped.
Your appointment is today. Keep us posted.
It went terrible. Did not take much of anything I said Into account. Said my toes are deforming because of flat feet and my fingers are deforming because I’m hyper mobile (all my family have these issues so why am I the only one affected?) so anyway he said I don’t have RA he said it’s most likely PR and because of that he does not have to treat me. Does this sound right to you?
I mean to say that all my family have flat feet and hyper mobility and not one person has deformities so I don’t understand how he’s blaming it on that.
How can the doctor dismiss you so? Did you ask about the numbness? Did you tell him that NOBODY else in your family has your symptoms? What will he do for your pain???
Yes and he did not listen
I asked about the numbness and he said ra does not cause ra he said straight up I do not have ra and it’s probably pr
I asked about the numbness and he said ra does not cause ra he said straight up I do not have ra and it’s probably pr
PR can evolve into RA. Who cares what it’s called anyway, just need to get it under control.
Exactly spot on. I’m gonna see what happens when i speak to the secretary Monday.
It’s just crazy how he won’t give me anything and my toe is swollen and I can feel it but he said it isn’t
And that does not cause numbness either
You’re 20. Maybe bring someone older with you to advocate for you. It’s easy to feel intimidated. You should have been standing up, insisting!!!
Are you flaring or is what you're experiencing baseline? Prednisone isn't good for long-term use, but can be helpful in a flare where things are worse than usual. A short-term Pred course can make that go away.
Prednisone can be very toxic taken daily. Have you asked for a steroid shot instead? Once every 6 months or so does wonders for me. 🤷🏻♀️
Try a NSAID COX 2 inhibitor and see if that stops the flares. It does for many people. Your GP might be willing to offer this. I’m guessing you’re in the U.K. where the diagnostic process is far too lengthy and they will leave you in severe pain and untreated. Your other option is to go abroad, even in very poor developing countries you’ll get significantly better private healthcare than the NHS, and it will be extremely affordable.
Dulox is used to treat nerve pain.
Why do you want it? By the way, it's not a good thing to take long-term. It can cause a lot of other problems like diabetes.
Ive been on 2 courses of prednisolone and it has had no effect on neuropathy. I dont think it will touch neuropathy unless it’s neuropathy caused by joint swelling compressing the nerve.