Weird Nerve Pain all over at different times. RA or Medicine to blame?

[turtlemom2]

RA complications? or is it leflunomide side effects? Anyone know? I have been on LeFL for about two months now and I am very sensitive to meds of all kinds. However this med seems to be helping keep pain managable. However, I seem to have developed sudden sharp pains in my finger tips, shoulders and every where just suddenly and it becomes very unnerving. I have read that RA can eventually develop neuropathy over time and they seem to go hand in hand. Yet I have also read that the medications can do this too. Any thoughts? Anyone else have these weird painful short bursts of nerve pain? Or does the meds make the Fibromaylgia worse? Any thoughts?

[Frankiefocus]

Hi im on methotrexate injections and now and then i get weird painfull tingling on my left hand. I take an over the counter antihistamine and it sorts it out. I have also checked and there is no mediacal issue with antihistamines and mtx.

[turtlemom2 in reply to Frankiefocus]

I had to get off MTX. However I work so if I take an such medication (antihistamine) I might fall asleep at my desk lol

[Frankiefocus in reply to turtlemom2]

The one I take does not make you tired they are called

Allacan Citirizine Hydrochloride

[Hidden]

I get this painful tingling in my feet and it has just stared in my hands have been on methotrexate for 3 years. I had this in my feet before diagnosis so I think it is RD.

[sylvi]

Your post gave me some food for thought as I get sudden sharp jabs of pain and I get it in my fingers and my legs. They can suddenly jump and so does my hand when I am sitting here when I am trying to think what to write. It will be something I will need to ask when I next see my rheumy.xxxxx

[turtlemom2 in reply to sylvi]

Please let me know what the Rheumy said! I don't get to see mine until Nov 1st.

[sylvi in reply to turtlemom2]

I will if I don't forget I am now hopeless at remembering things these days.xx

[Pawz4me]

I had some neuropathy like pain in my big toes the first couple of months I was on leflunomide. It seemed worse at night. I've always worn socks to bed, and it hurt enough that I couldn't stand to have them on. But it stopped after awhile and I haven't had any problems since.

[turtlemom2 in reply to Pawz4me]

You give me hope!

[Yogi-bear123]

I ‘be been getting bad pains that have been flitting about and fatigue. Gp just rang and said my blood liver results are too high... just when I thought I’d found a drug that worked☹️( tofacitinib) I had to come off lfludomide for the same reason... only other time I’ve had nerve type pain was when I was low b12 like u I have been hyper sensitive to meds.. hoping and praying that if I lower my dose I will be ok🤞 I think u have to be a bit of a detective sometimes... ask for relevant blood tests and they should hopefully point u in the right direction! Good luck.

[turtlemom2 in reply to Yogi-bear123]

Thank you Yogi-bear! How long were you on Lefl? This is my second month and I do not want to come off it. After all the meds I have tried this is the only one that I have tolerated with little side effects that actually works. It seems it does not stop all of my flares though as I still get them just not as bad. It does nothing for my Fibro which as I understand often times go with RA. I try to ignore the sudden sharp pains but some times they get really really bad and it gets hard to ignore them and keep going.

[Yogi-bear123 in reply to turtlemom2]

Was on for about 3 months. I’d just tell your gp and sort some blood tests out.👍

[marvalusxoxo]

You are right RA can eventually in some develop neuropathy yet it may not manifest on everybody. The side effects of lefl. are not consistent with what you are experiencing. Side effects generally are cloudy urine cough diff breathing, dizziness fever headaches nausea or vomiting sore throat yellow eyes or skin also joint pain or stiffness among others.

[turtlemom2 in reply to marvalusxoxo]

Then that is possibly just RA advancing? Wonderful.

[marvalusxoxo in reply to turtlemom2]

Mine os advancing as well. I had an MRI done of my neck and spine since dr. believes it has moved to my spinal cord as well. This sure is a debilitating illness. We mustn't despair tho😊

[charisma]

I got pains in muscles and bones after three months on LEF. More likely in over 60s. It also caused further hair loss, horribly dry skin with showers of cells dropping out of clothing, very dry mouth, eyes etc. And great thirst!

Best talk to RA professional to find out why you are having your particular symptoms. 🙂

[medway-lady]

I had this and my advice stay with it as it just went after about a week It was agony so cold packs, paracetamol and codiene, heat pads a dreadful time but I'm glad I stayed with it as one day I just oke up in remission and that was the case for over 4 years. I wish I could still take it and make sure you get your bloods done regularly. LEF is a great drug I had no side effects apart from the pain about 12 -14 weeks in, Try to stay with it provided your blood results are ok say for at least 4 months as it takes a long time to work but if it does its like magic.

[turtlemom2 in reply to medway-lady]

Are you still on it?

[medway-lady in reply to turtlemom2]

No but not anything wrong with it but other issues. I've asked to go back but medical view is best not. Kidney problems and LEF don't go together as its about the kidneys being able to filter it out.

When on it I had lots of pain after about 12 weeks in shoulders then in wrists lasted for an awful week then went and never came back. I took it for years with no problems just a normal life which is the aim of all RA meds. I was told the pain is fairly normal it might be when it starts to work on the affected areas. I'm suprised that C346's people did not know this and stopping it for a week would normally not make a difference as it takes so long to work. Although that is just my experiance and you must be guided by your doctor. It usd to be stopped if you had a bug then I was told no, as has such a long life. However their are washout procedurers if needed.

[CJ46]

Hi, I was on leflud for three months then suddenly started having burning and shooting pains, at first in my fingers and toes then progressed up my arms and legs to a point I couldn’t feel the pedals in the car! I went to the doc thinking it was all sorts of reasons but was gutted when he said he thought it was leflud cos it had been working so much better than all the other RA drugs without any side effects. RA Consultant thought it very unlikely to be the drug but I stopped taking it on both their suggestions just for a week and almost straight away what they were calling peripheral neuropathy went away! I then started it again a week later and it all came back so they decided to switch me to sulphasazine. After two weeks of increasing the dose of this the burning pain started coming back so I reduced the dose right down and again all went back to normal! I don’t think sulphaz is as effective as leflud, that seemed a miracle cure apart from the neuropathy, but at least it solves the problem, I just have to take lots of pain killers as well with it. Sorry this has turned into a long post but thought my experience may help. Good luck, I hope the pains don’t turn out to be permanent.

[Rheumagal]

I’ve had nerve pain that’s been becoming worse for the last year. I saw my neurologist who tested me first for ms and then settled on a diagnosis of neuralgia. No fibromyalgia.

I don’t believe in my case it’s caused by meds but perhaps from RA? Not sure.

Going to be starting amitriptyline soon which should hopefully be helpful.

[medway-lady in reply to Rheumagal]

I take Pregabalin for nerve pain left over from Shingles, it might take up to a year to go but should do eventually. I tried Amytrinptyline but not as effective as Pregabalin for my pain but does make me tireder than normal.