Drug reaction?: I've had RD for 15 years and I'm... - NRAS

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Drug reaction?

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I've had RD for 15 years and I'm looking for some advice, As things have changed recently, I have had an MRI which has shown several disc bulges and spinal stenosis and Rheumatologist has referred me to a Neurosurgeon. I have been on Leflunamide since last October and was given Gabapentin in April for sciatica pain, after a while I felt the pain was worse and I felt ill, my walking was different, after coming off Leflunamide because of being on antibiotics I felt better, so asked GP about it and she advised to try Leflunamide for a week or so to make sure that was the problem, have taken them for a week and felt pain much worse and walking difficult again , I think there might be a reaction to these drugs together, has anyone else had these problems I really want to stop the Gabapentin as they do make you more fuddled so have cut down on GP advice I would Appreciate any help as I don't see Rhumy till October. Many thanks Jane

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12 Replies
Livingston profile image
Livingston

Depending on where the disc bulges & stenosis are and how bad they are, they could cause problems walking & nerve pain.

Leflunomide can cause problems with the nerves in arms/legs and so could also be part of your issues. It hangs around in your body for a long time though, so I'm not sure how long you would have to take off it without a washout procedure for any side effects to go away.

I've heard people saying gabapentin has done all sorts of strange things to them, including making nerve problems worse instead of better.

So I suppose I'm saying - it sounds complicated. Good that you have a neurosurgery referral - they are probably the people to get you sorted out. Hope the appointment is soon.

in reply to Livingston

Thanks Livingston, it's the base of my spine that's the problem, I didn't know that Leflunamide could cause problems with the nerves in arms and legs, the rhuemy gave the gabapentin to help with the nerve pain as it had got steadily worse, isn't it a vicious circle we are in with drugs for this disease, have been on sulfazalazine, for ten years, methotrexate and now Leflunamide , I wish I didn't need any of them but hope I can get it sorted out. Are you actually from Livingston, I used to live in Shotts, this website Is so helpful and reading all the other peoples problems makes me grateful that mine are not so bad. Take care

Livingston profile image
Livingston in reply to

Hi

Yes, I live in Livingston - born & brought up a Falkirk Bairn. :)

I'm particularly friendly with the patient info leaflet for leflunomide just now as I started on it this week - added on to my methotrexate and hydroxy.

I totally agree about the drugs - sometimes they seem worse than the disease.....and then the disease bites you again and you don't know what to do for the best.

Hope you get sorted out soon - backs are tricky things.

maria_68 profile image
maria_68

Hi, I have Pregabalin (Lyrica) to help with my nerve pain because of my disc bulges, I couldnt tolerate the Gabapentin, so I was prescribed the Lyrica instead as it is gentler than the Gaberpentin, it is as well, each time the Gabapentin was increased my side effects got worse, since going on the Lyrica I have had no side effects, I am also on Hydroxy and Methotrex. Hope your pain gets sorted soon, there's nothing worse than being in pain all the time. x

Thanks Maria, I've never heard of that one, really don't like Gabapentin, seeing doctor this week will maybe ask about it, will need some kind of pain medicine unfortunately.

BoneyC profile image
BoneyC

Hi, I have been dx recently with bulging disc L4/5 with spinal stenosis. Currently awaiting Pain Clinic appointment. I've had back pain for nearly a year, various GP's & Rheumatologists dismissed it as mechanical, sciatica, lumbago etc. & physio wasn't helpful. Gabapentin made no difference to my neuro pain but made me very drowsy. I'm now on Pregabalin which doesn't make me so drowsy but not sure it helps with neuro pain either. I was also given morphine patches 5mg but these make me ill, as does all forms of morphine and I had to stop.

I've had RD for 44 years, dx as child with Stills Disease, and know I have spinal stenosis following C3-C6 neurosurgery for decompression & fixation.

I don't think it's the drugs I've taken, but the degenerative nature of the disease that has caused my back problems, as all my joints are now damaged. I think it's a case of finding effective pain relief.

in reply to BoneyC

Hi BoneyC, thanks for your reply I've had sciatica for about 7 years which has got much worse, the reason for the MRI, as you have had some surgery can you tell me how that went, my cousin in America has stenosis as well and has just postponed her surgery as she has some doubts about it, she was due to have two screws inserted in her spine to ease the numbness and pain. Is this similar to what you had and was it successful. I see GP this week to try and get some suitable pain relief.

Best wishes for a pain free week x

BoneyC profile image
BoneyC in reply to

Hi Angysmum, I had cervical laminoplasty, decompression & fixation C3-C6 in 2002. I had a loose vertebrae and spinal stenosis, with lots of neuro symptoms & no choice but to have surgery to prevent paralysis or worse. The op went really well, about 4 hours or so and I was out of bed that same evening, in the shower the next morning etc. It took a long time to recover from the neuro symptoms, weak legs, etc. but I think I had a very good neurosurgeon and trust him if I have to go through anything neuro again. I can't move my neck at all because of the fusion but that's about it.

Good luck.

oldtimer profile image
oldtimer

I know that everyone is different, but when I have had sciatica with MRI identified bulging discs, the two best treatments for me were osteopathy, gentle exercise daily in the swimming pool and frequent mobility exercises at home. I also used a TENS machine. Yes, I had to take 60mg codeine six hourly and amitriptyline at night initially to enable me to move enough to get to the pool and the osteopath, but was able to gradually tail those down. With me, I find that if I mobilise (even when it hurts) it is over quicker. Hope this helps!

carotopgal profile image
carotopgal

Hi! I've had 2 lower spinal fusions over the past 20 years and was very grateful for them! It stopped the never ending pain each time. I now have bulges/stenosis in my neck as well. But neither the doctor or me wants a 3 level fusion in my neck. The chiropractor is helping me handle the pain.

I also couldn't take Gabapentin. It made me SOOO fuzzy headed I couldn't stand it. I felt like had Alzheimers or something! I came off of it and the rheumy put me on Cymbalta (I also have Fibro). It has helped me loads with all the "other" pains that I have that aren't connected with the RA...it does seem I am always hurting somewhere these days! LOL! I try to laugh, because really there isn't much more you can do.

Hope you find the answers/help you needing!

Thanks Carotopgirl, Thanks for the info, I didnt know much about surgery, just thought the pain was sciatica as I was told that for years, but now better informed with this sight and the internet

Sorry hands not working right, submitted before I checked spelling! That fuzzy feeling again. Hope your pain is bearable , take care x Jane

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