Hello out there...I have APS and have been on this wonderful forum for a few years now. I've always found it so helpful and full of support through this life journey w/APS. Today I came back from my doctors with a prescription for Gabapentin for neuropathy. Has anyone taken this drug along with warfarin? Hoping to hear some testimony and guidance here if possible? I take 7.5 warfarin a day and Plaqunil. I have body jerks with foot/leg neuropathy which is coming on worse last three months. Going in for a nerve conductive testing as well as starting this medication tomorrow. Blessings to all...thank you for any help you may possibly have
Becca
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Thank you Mary, yes just ran blood panel waiting to see what comes from that. I will let you know how that goes soon. Thank you for your kind reply and guidance as always it is helpful.
Miss Mary says check your iron an B-12 my body quit MAKING B 12 I love the ones that dissolve under your tounge you can catch them on sale buy 1 get one..I hope the gabapentin helps mine is terrible pain constant an jerry legs cramping my tolerance I recon is high my nerve conductive test gave nothing started on lyrica an built up to 900 mg a day an 50 mg of tramadol. .it's alot yes...but considering I'm 53 an my nights were spent in a ball on the floor in tears..I'm on these drugs to keep from Goin to a pain clinic..where they only give oxxie an fentanyl patches ..on those 2 was able to stop everything else ..but if you don't take 2 pills a day an the patch they will fire you ..as a paitent I was honest as I was raised to be that my Pain't ever so often only needed 1 pill...it's sad you can't be honest with a doctor the nurse said keep extra pills IN another bottle....I quit going they test your levels an the oxxie has to be high..I quit going ..no wonder folks are getting addicted?
My b 12 is much better now still working on my iron levels..
OMG. I can’t believe they would test to be sure your Oxxi levels are high. That is insanity! Yes, no wonder people are addicted. So sorry! I am going through some kind of leg pains and I too am in a ball crying/screaming from the cramping and pain. I had some tests yesterday because the Dr can’t find pulses on tops of feet only on the ankles. Ankle pressure tests. Not sure of the name, but it hurt so much when she kept pumping the blood pressure cuff. They said the result was not good so I go back in October to get the large arteries in thighs scanned. I cannot feel my legs and feet from knees down most of the time, yet they are tender to touch and the electrical shocking is horrible. I really can’t handle the thoughts of more drugs or stents. This syndrome is relentless!
Is it insufficient veins? It also has 3 initials... i can’t think of it right now either- it’s where the valves in the veins don’t work correctly- and reflux a bit. A bit of pooling.
Hi Kelly. They have told me nothing so far as they are still investigating and want to do more testing in October. If it is what you say, is it dangerous and will I need amputation?
Oh, gosh, no I shouldn’t think so! I was just trying to jog your memory on the terminology your doctor used. I apologize.
I’m not at all sure what the term was the doctor used with you.
You must wait for your appointment.
Have you had a DVT in that leg?
Depending on the situation, there are a lot of interventions that can be discussed.
Each patient is different. You have not received the full battery of tests yet.
We went down this road with my arm . ( I still have it, attached to my body just fine and quite healthy!)
It was discussed as a remote possibility- that I could loose it- but that was by a vascular surgeon. After several appointments and several clots. I had total occlusions. I did grow new veins around the occlusive ones. It was a very painful process.
It throbbed and throbbed...
Has your doctor told you any positions to place leg in to help with flow?
In fact, since this question is so highly specific, let’s switch to Personal message chat function to discuss further if you have any further questions, although your situation may be completely different than my arm.
Since you are having a difficult time, ( understandably so!) please don’t hesitate if you should so choose- to post a question about this . I would think others have been in this boat.
Your doctors will know you best, as you well know- but maybe others here might help you formulate useful questions.
Hi Kelly. I get kinda frightened because I do know amputation with this illness is very possible. I’m happy to hear your arm was saved!😁I am most intrigued about new veins growing. Did they grow on their own or did you have to take meds or do some kind of operation to stimulate them to grow. Also why did it hurt so much? Our bodies are so incredibly interesting!!!
No, I have never had a DVT in either leg but this left leg at the back of my knee can get so bad I am crying, screaming, sweating and praying it stops, which it always does after 45 mins or so. I’m always thinking this must be a clot that won’t let go!! It doesn’t happen everyday but when it does, it’s fast and furious. My second stage to the testing is in mid October. Hopefully I know more then. In the meantime I have to find a real APS clinic or specialist. Mary helped me out in that department and I found a center in Toronto, Canada.
3 hours away by car. A lot of paperwork to get an appointment to see this team. Hope I can get help with my calcified mechanical heart valve as well. Gosh, it’s a full time job taking care of broken down bodies. I’m getting pooped out especially now that I’m in my 60’s. Take Care Kelly
When things go wrong in our bodies like this, we know good and well something has certainly gone wrong.
The reason I asked you if you had experienced a DVT in the leg or not had to do with the three initials I was trying to remember. The three initials are ,”CVI.”
They stand for Chronic Venous Insufficiency.
This can happen in superficial veins when the valves have been damaged and blood pools and can’t return correctly to heart.
This is why I mentioned to you I had regrown my own new network of superficial veins ( naturally the body will do this - it’s the body’s natural way of problem solving around a permanent , or long standing in my particular case- deep vein thrombosis . These new superficial veins help pick up the vascular load.
The pain is from the extra strain- they are not as efficient as a deep vein- not as big - not as much flow.
It’s just painful, Holly.
But my deep vein occlusion did resolve!
I would say- do not jump to any conclusions before you see specialists.
I would ask for a vascular surgeon if there is any question of it being vascular.
I only heard about CVI but not any understanding. I’ll check web tomorrow and see if I have symptoms related. I hope stents aren’t involved for a fix if I do have that. Thanks for the info. Always something eh!!
I have taken gabapentin for neuropathy along with warfarin for some years now, I also take plaqunil.
Generally you will start off on a low dose and gradually increase if ness, I’m currently on 600mg three times a day which is generally the highest dose.
I personally haven’t had any probs with it, but know others who have. It certainly sorted my probs out.
Do remember we are all different what works for one might not work for another so be guided by your medics.
Thank you so much for your testimony. I also am on warfarin and plaquinil looks like we now have the same cocktail. Will post again once Ive been on it a few weeks. Today is my third day of Gabapentin and I'm feeling the drowsy part of it...I'm used to running at full throttle so this will be an adjustment...not liking the groggy feeling. My wonder is if this treats just the symptoms or does it heal in some way? What is the purpose? Just to slow it down or does it take whatever is causing it away? So many questions right...
I’m sorry you are experiencing such problems with this.
I do not have the jerking symptoms, but I was diagnosed with ,”CIDP” - chronic Inflammatory demyelinatng poly neuropathy , by my Neurologist.
My issue was ,” burning veins.”
I also feel a sense of detachment from my limbs- as if I’m not quite sure where they are exactly in relationship to the rest of my body- they feel slightly, “ off.” I just feel goofy and clumsy, I am told MS patients have this similar feeling.
I was prescribed Gabapentin for these two reasons listed above.
I did not find it particularly helpful, but i was not willing to give it a chance to settle. I only tried one small dose and it made my balance horrible. ( I’m also on seizure medication, so it may have interacted.)
We are all different- so I think the best thing you can do is try it, see for yourself, and be prepared to draw your vein value daily for three - 5 days once you start.
Just see how it affects the INR and make the adjustments you need, making dietary adjustments in you natural vitamin k intake through green leafy vegetables to adjust for the interim until the 48-72 hours of Warfarin adjustments can be seen.
Thank you for your words...yes I am for sure testing INR consistently to maintain the proper 3.5-4.0 level. Third day I am a 3.3 so this is encouraging. I like to know more of the specifics that you are having regarding your veins. If you can explain more of what happens to you...it may help me even by comparing and giving word to my Doctor. Seems all doctors are left baffled at times...
The vascular burning I’m having in my veins really does seem to be isolated to my veins.
It happened very quickly with the onset of my first full and totally occlusive DVT in my arm, before I was place of warfarin. ( Early November 2016.)
I was Hospitalized in San Antonio Texas, and placed in IV heparin drip for several days while I was being bridged to warfarin. That was how I was introduced to the world of warfarin, INR’s , got my official diagnosis of APS, was counseled by a registered dietitian the doctor sent to my hospital bed, etc. I was in for 10 days- until my INR got to 2.0- Then I was released to go home. The idea was the Warfarin level would continue to climb.
While in the hospital, I had horrible migraines and ,” burning veins.” My legs and arms felt like I was developing additional DVT’s. The scans ( Doppler) were clean.
Within about four months this was not the case. I did develop more DVT’s. These vascular burning feelings are precursors for me to damage of lining of vascular walls. They may be going into spasms according to one Hematologist. This can exacerbate clot formation in the setting of APS.
My anca / panca are ok. My SED rate ok. Only one positive ANA. No double stranded ANA.
I might have Vasculitis- my Rheumatoligists are not in agreement on testing results- I do have the rash outbreaks- not severe. It is ambiguous at this point. The rashes ( which are purpuric and are now sometime making tiny bleeding ulcers) - my doctor calls plaques- are not painful at all. They seem to be independent of the vascular pain.
I was forming DVT’s ( new- scanned and proven clean between scans) at a rate of about every 10-12 weeks on average.
We tried every thinning agent possible. In every combination possible. I was sent to London- I saw a top APS Hematologist. The strange thing is... my antibodies are not eyebrow raising high. Low to moderate range. - I have the traditional antibodies plus one or two of the phosphotidylserine group.
Here in the states my doctors got very creative, and very very aggressive. We are still in that mode now.
I’m currently on Rituximab at a very aggressive dose. I did clot on it, an am no better, still progressing with APS so it’s being stopped. ( decisions are being jointly made by my Hematologist, normal Rheumatoligist, and he consults with my specialty APS Rheumatoligist in Denver CO.)
I’m now being put on IVIG. My Rheumatoligist is bring on yet another consultant. He is requesting I see her urgently, so I have a meeting with her this week. She is an immunologist. It is to get a second set of helping hands and eyes for the IVIG process.
APS patients are at higher risk of clotting complications than other patients receiving IVIG, so the thought was to bring an immunologist on board with the process. It’s the innate immune system that can be negatively reactive in the IVIG process, and this falls squarely in the auspices of an immunologist.
IVIG is not easily approved here. It’s been submitted for approval by my doctor, and I should be started on it soon.
Hopefully this treatment will calm down the veins, and stop all this clotting.
I do not think in my case it is from the nerves. ( unless it is second order. I do have dysautonomia- and there are nerves in the tiny little muscles around the veins. They can spasm. We asked this question . The vascular surgeon said maybe- the Neurologist said yes- but most likely it’s the antibodies irritation the vessel lining.
Hi Bec - I am the poster child for Gaba-I have been taking it for 9 years now - 2400 ml a day till just about 4 months ago - I was having issues {i had ha them before and had to lower dosage s for awhile - - i am 1200 ml a day now . I also take hydroxychloroquine. I had a foot ulcer that dam near cost me my foot in 2014-2016 before we finally won that battle {not with out threats of losing my foot }. i have constant left leg issues , just presently going thru a Vascular complete work up . with not only that but ultra's and x ray's . In 2009 i had bad clots on popliteal -posterior tibial veins work up came back with residual scars sort to speak - .I still have pain from left thigh to behind left knee and down to calf. restless leg syndrome at night . and involuntary limb jerks . mt extremely erratic INR is an always present problem . I also have Very bad muscle spasms in trapeziums muscles in back and neck of which i get Lidocaine shots every month - and C spine injections every three months for Kissing Osteophyte's of which i am having a real scary issue as we speak {check all my posts would be the best to follow all my issue s which trust me there are over 25 . you can PM me if you would like .it seems that we go thru a lot of similar problems and meds. i have gone thru nerve -muscle and all other elect. and what ever tests years back.Other then i am a male and MUCH older than yourself we do have an amazing amount of like things.if pm comes i wil go thru entire med and med problems list - i have had a Dia. of APS Triple Positive -Primary status since 2009 and i think it started with massive amounts of clots thru out my body 2 to 3 years prior to 2009 .What part of the country are you from - I am in NH mid State. and holding Ha
My heart just broke reading your post..oh my dear soul I am so sorry for your pain that you must be enduring. Goodness. Sending my hug over the airwave here and prayers. I appreciate your openness. It surely helps us all when we all visit through this medical journey. I hope you feel the support also.
So sorry Becca to hear of your pain with the neuropathy. I hope the medication helps with little or no side affects. I’m going through testing etc at the moment for my legs and pain. I didn’t do well on yesterday’s tests so they have to do level 2 testing in October. I’m very frightened that I have to take meds or have a surgery. I’m in the dark as to what they suspect it could be but I’m sure it’s not curable. Best of luck to you on your meds. Keep us posted! Holly
Thank you for the encouragement. Will keep you too in my prayers...you know it keeps us gripping at finding strength. It sure has helped me to pay attention to what I eat and drink. I am so deeply conscious of my intake it has helped in so many ways eating clean and hydrating above the normal person. Please take care and do what is right to help yourself. Rest as much as you can. Send me a message if you think about it once you find out. Would love to keep encouraging you as much as I am able too.
I’ve had Gabapentin in the past for Multiple Sclerosis but they did nothing. Personally I wouldn’t go anywhere near them and Lyrica but that’s my choice. Good luck
Hi i am sorry i don't think i am the right person to answer as i don't take warfarin. I do take gabapentin for the pain in my neck but only 300mg as i could not take any higher dose
My problems are Rheumatoid arthritis which i have had for 35 years,ckd , leaking heart valve and osteoporosis so i think my problems are different from you.Hope you find someone to help you take care of yourself christine
I suffer from terrible chronic pain and have been put on everything under the sun. I was on gabapentin for a while, then taken off as it wasnt helping. When I was taken off I didnt notice any difference at all. Long story short, I have a new pain specialist and he swears by it and put me back on, and it hasnt done a thing for me. They keep upping the dose and nothing. I stopped taking it for a month and again, no changes and feel the same. I see him on monday and I will report it to him. I have a friend who takes it and he says it helps, so like always, some people it works for, some it doesnt. I haven't ever had a problem taking it with my warfarin, nothing noticeable anyways.
3 years ago you told us you had an Oncologist and he knew a little about APS. Do you have the same Specialist now or a Rheumatologist perhaps?
I wonder what anticoagulation range you have today and if you can keep the INR stable which must be difficult if not tested often enough and on a lot of new and different drugs.
As APS is a blood-disorder (too thick blood) the anticoagulation is No 1 priority for us to reduce the risques for clots and trombosis. Usually only a Specialist of our illness will understand how important this is for us and who is willing to help you with this and allow you to test more often and get help with the monitoring at a coagulation-clinic.
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