New Kid on the block with several questions
I was diagnosed with RA 4+ years ago and put onto methotrexate. RA has been in remission since that time. In the last 4 months I developed Neuropathy affecting my feet. I am 78 years young.
Questions:
1. When I go to bed, I lay awake for about 3-4 hours while my feet and calves tingle and feel like somebody is rubbing the bottom of my feet with sandpaper. Occasionally my foot jumps. Anyone know how to overcome this and get more than 4 hours of sleep at night?
2. Who is better to treat Neuropathy? My GP or my rheumatologist?
Thanks for any suggestions that you may have.
Interested in more discussions like this? Go to the Neuropathy Support Group.
"Check with your doctor right away if you have seizures, confusion, tingling or numbness in your hands, feet, or lips, trouble seeing, or headache. "
https://www.sps.nhs.uk/articles/using-folic-acid-with-methotrexate-in-rheumatoid-arthritis
Are you also prescribed folic acid. Methotrexate is a folic acid antagonist. Folic acid is sometimes recommended at 5mg on the days that you don't take methotrexate.
Your rheumatologist should be consulted as the prescriber because it is possible that the methotrexate is causative.
Besides you might be in RA remission.
Thanks for your reply:
I take a 1 MG tablet of folic acid daily. I take (6) 2.5 MG tablets of methotrexate once a week. 3 in the morning and 3 at night. I have a blood test every 3 months and everything has been normal to date.
I am 70 years young old and I treat my nueropathy with iced hot roll on for when my feet start acting up and cut way back in sugar and sugar alcohol products. Doc gave me Duluxatene too. As you age you must get your sleep it is when the body repairs and rejuvenates so this untreated will age your body quicker. Plug your post into ChatGPT and your meds list and all about your health condition and ask it to be both of the pros you mentioned to give you guidance on who and what you need to do. I use it to get a comprehensive look at my health and what I need to be doing. Best to you and your health.
Thank you for replying. I’ll give it a look. 😊
A neuromuscular neurologist treats neuropathy. They also do the testing. A general doctor does not do the testing they don’t have the machines. Biopsies for small fiber neuropathy and emg/nerve conduction testing. I have had it since2002 mine is autoimmune. Also my neuropathy has caused my seizures the neurologist linked it to my brain. I see a neuromuscular neurologist and a research neurologist out of Boston.
Great information. What do you mean when you say autoimmune? Does that mean you have RA? Should anyone who has neuropathy see these specialists?
Thanks for the direction
Autoimmune my ESR, C3 , ANA along with other autoimmune markers in my blood are high. They have biopsied lymph nodes inflammatory markers high.
I have Sjogrens, SLE (lupus) and RA. My autoimmune markers have been elevated since age 10. I went on IVIG at age 10.
Can you tell me a bit about your experience with IVIG? I am waiting for results of tests that went to Washington University. I have SFN that came on suddenly. My neurologist told me about the negatives of IVIG; it seemed like he was discouraging me, but he said he would also go to bat for me with insurance company if immune related cause is found.
I see a neurologist in Boston too, who do you see? My neuropathy is caused by my autoimmune issue as well, except mine is in my face. I do have seizures just numbness on my the right side. They do not see this often, so I am basically on trial with everything they do and nothing has made it better and they don’t think anything will, so here I am.
I was on IVIG from age 10-18 autoimmune disorder. I am taking panzgya. It helps with my balance and dizziness. I am going to talk to my neurologist maybe about rotating it with gamma grad. I have severe motor neuropathy and gamma grad treats motor neuropathy. On the panzyga it stops the foot and leg pain for me. Truthfully. I am really a hard IV stick and I would like to use subq instead of IV. I don’t know if gammagard works as well as panzyga. Problems- drink 100 ounces of water day before. during and after few days later helps with side effects. Someone told me about the water I did not know about the water the first time. Migraine 9 days and my kidneys hurt. Mouth broke out in hives. Afterwards I get nauseous and can just drink a shake. It goes away. It is worth it to me to get rid of the dizziness and balance problems and my feet not hurting. Even though I have lost feeling in my legs feet up to my knees and hands up elbows it’s worth it for me. I am a retired nurse I begged to be put on it. I took in all the documents and showed the neurologist. I take it twice every week. Other than the IV for me it has made a big difference. Each person is different on what works for them.
I know people that have tried several types. Avoid IVIG with sugar in it sucrose or may be a different name. Can cause severe kidney problems use the IVIG without it.