Fizzing with pins and needles everywhere - Methotrexate?

Mat48

Hi. I've had a weird time lately. I went to see my rheumy consultant for the first time in a year a week ago on Thursday. I was first seen by the local physio who has the rheumy nurse job here - only she isn't a fully trained or qualified rheumy nurse - she's a physio. She was taking my disease activity score to see if I qualified for Biologics - which I knew I wouldn't do. I have tried 3 dmards and can't tolerate 2 and one didn't make enough difference to my RA it was thought.

I was the last appointment of the day and the consultant was very friendly but really just wanted to chat with me about other stuff relating to my new volunteering post for NRAS and some AC related talks he was chairing and I was to attend also. Well that's not fair actually he wanted to see how I was but as soon as he'd decided that I was fine he moved onto the chatter.

The thing is the physio gave each of the 28 joints a quick squeeze and announced no swollen joints at all. Which is great of course but then I never got double checked by him. And she can only actually examine a handful of patients at rheumy clinics here every two months so I'm not sure how experienced she would be at detecting more subtle swelling? He did look at my hands and announced they were the best he had ever seen them (he's only actually seen them four times with big intervals apart!). We looked through the x-rays of them and they were fine apart from a bit of OA. The problems I'm having with moving around were dismissed as degeneration of the spine and I was told to keep active, weight down, remain on 12.5 Metoject and that was that. He did say that some of his patients do choose to stay on a lower dose of MTX and live with the effects of some active disease rather than put up with the toxic side effects. I said I felt that some side effects were just to be born stoically by me but I just couldn't bear having a foul taste all the time at the higher dose he put me on.

I did tell him about the pins and needles that have been torturing me for two weeks now all over my body. He said that as I have no swollen joints and as my ESR is down to 28 this month (it was 44 last month) he thinks the neuropathy is unlikely to be anything relating to my RA. I did ask him about my B12 test which I'd just received the result on of 444. He said this was good so I asked him if the five folic acid tablets I'm taking per week might be skewing the results and making things look normal - bearing in mind that I'd read this on an NHS site about vitamin supplements. He agreed this can happen but with a figure of 444 he felt that it was unlikely that I was B12 deficient.

So away I went feeling vaguely perturbed but also guilty for still being worried when I'd more or less been given a big thumbs up and no swollen joints apparently.

I ended up going to see my GP again on Wednesday because the static-like pins and needles were completely burning and stinging and keeping me awake every night. She raised my dose of Amitriptyline to 2 per night and told me she felt it was the MTX that was to blame for the poly neuropathy. I asked again about B12 and she said the same thing. I asked if my hypothyroidism might be the problem and she said that my TSH and T4 were within the normal range (only just) and I should carry on taking my Levothyroxine as per normal - no raise in dose.

I'm now seriously raging with this pins and needles and it's everywhere and there's no let up until nighttime when I down my Amitriptyline. She said if it continues then, when I see her in ten days time for MTX bloods we will discuss my coming off MTX for a trial period again (was off it for bad taste in March/ April). I don't like this idea much because I'm in no pain currently and neuropathy is listed as a rare side effect of Methotrexate.

Any thoughts anybody? - I'm really in quite a quandary and considering just taking B12 supplements anyway, which are harmless, and seeing if this sorts things out. But I am a bit unsure because I don't want to introduce even more confusion or antagonise my GP by introducing a supplement which she hasn't recommended :roll:

DebbieT

Hi,

Wot has made you so convinced that wot ure medical team are telling you may not be the truth?

I had left side pins & needles on 30mg mtx. I was sent to hospital with TIA concerns & had a ct scan. They found a brain cyst in the pineal gland ... They decided that wasn't the cause of my symptoms either!! I was then dealt with by neurology & I've been diagnosed with complex migraines. They can cause paralysis in extreme cases but mine is characterized by pins & needles. My point is .....
please don't dismiss their opinions as they may have very valid reasons why they don't believe it's caused by mtx!! Obviously we all need to take an active & interested part in our health, especially with the toxins we put in our bodies but at some point we have to trust our doctors, don't we? :?

I really hope they're able to put ure mind at rest asap. It's horrible not knowing why we have a certain symptom. Take care.x

Boomer13

Hi Mat;

Do you have any numbness?

My illness started with neuropathy (and one painful joint). I had pins And needles, buzzing sensations, nerve pain, restless legs, wrist drop, lots of muscle fasciculations and some autonomic nervous system symptoms. I never got anywhere with having it diagnosed. I only had one type of nerve test because I have a brother with a really serious neuropathy. It only showed my nerve function was slightly slow.

I wasn't on mtx at the time, so we knew that wasn't the culprit.

After suffering away for awhile, I went on Gabapentin which over time has controlled it somewhat but I still have weird episodes. I did put myself of sub-lingual B12 for awhile, because I thought it couldn't hurt and wouldn't interfere with any meds.

You could ask your GP about a different med for neuropathy, like Gabapentin, Pregabalin. Maybe the amitriptyline isn't working for you? For my symptoms Gabapentin was a wonderful relief but side-effects were a little rough starting it. Now as soon as I reduce the dose, it starts up again.

I don't know if this is at all helpful for you but you sure have my empathy. It can be pretty awful. Hope you get some help soon. If you are not sleeping and it's really bothering you, maybe a trip back to the GP would be worthwhile? Sorry I can't be more help.

Take care, Anna

Mat48

Hi. Firstly Debbie - it is my GP who believes this poly neuropathy is being caused by MTX and thinks I should stop taking it. My rheumy on the other hand just shrugged and told me he would be most concerned if I dropped even further down in dosage and wants me to carry on despite the pins and needles. So its not a matter of not trusting my medical team - its the different opinions I'm struggling with because my rheumy only sees me once a year whereas my GP knows me well but is a generalist.

Secondly to Boomer thanks also -my other GP (I see two) thinks its unlikely to be anything neurological even though my MCV is 97.8 - one point under being too high. I think this is the size of red blood cell platelets and was told by the person who has pernicious anaemia that this is quite a strong indicator that something neurological is going on with me. My GP said he was flummoxed and advised me to ask the rheumy who just said he didn't believe it related to my RA. Its very confusing! I am trying to convince myself that its just all in my head and I just need to shake it off but this approach hasn't worked yet! I hope it just goes away and I don't need Gabertain or Preglabin or any more drugs to add to the mix. Also scared of having to come off MTX. X

ps and yes I do have numbness in my calves and ankles. Does this signify anything? I told the GP about this but he was still flummoxed?!

Mat48

Sorry Anna I meant to use your name but I'm using my iPhone to reply and edit! X

villier

Hi Mat

I think you should ask your doc for a referral to a neurologist, I have a very rare neurological condition and I can relate to all of what you are going through and it 'aint funny don't think for one minute it is in your head, the numbness can also be caused with neurological conditions, hope you can get this sorted out soon..................Marie

Boomer13

Hi again Mat;

I too have been between docs opinions and it's not fun at all. There is an extra anxiety that goes along with that. The numbness question my GP always asked about because he thought it might indicate something more serious. I did have numbness but it always seemed to be transient. All my docs seemed to be stuck in 'watching and waiting' mode then, while to me the symptoms were extremely distressing.

Interestingly, my blood too always showed a high MCV that left everyone scratching their heads. Again, not fun. There are lots of reasons for an increased MCV and 99, which mine sat at for over a year, was not considered overly high. Even mild abdominal bleeding could cause it. I became desperately anxious about it all and I was a basket case. No one gave me any answers so I tried the B12 thinking it couldn't hurt, and it didn't. My MCV is still mildly increased, but close to normal and without any horrible fluctuations in the other values, the docs never seemed to get too concerned. I don't panic about it anymore and it never goes any higher.

I sure understand your not wanting to take more meds; it gets a bit much. You sound pretty experienced at all of this DMARD stuff and I'm sure your rheum thinks he has your best interests in mind. Would it be worthwhile calling their office and seeing if they would address your concerns over the phone since you've just been in? They are the experts on MTX dosing and side-effects.

Mine has shrugged me off over things, but if I call back about something he always listens.

Don't know if that helps; hope it does.
Take care,
Anna

Mat48

Thanks Anna. Its really interesting to learn your story. I'm not quite sure if you take B12 of your own initiative now or through your medical team? If you find this much relief from it then surely they must acknowledge you have Pernicious Anaemia and need to monitor it to check your absorption of B12?

I live on an island and rheumy isn't contactable directly so I have to use my GP. I see the GP again on Wednesday week for my monthly blood monitoring. Alternatively I can pass a message to my consultant via the physio who acts as a messenger, but I try and do this as infrequently as I can so that they don't think I'm a pest. Maybe that's best way to go but it annoys my GPs I think so perhaps better to go through them as it keeps things joined up. She did say she would email him if the pins and needles continues. Meanwhile I have got some B12 - do you think I should just start taking it perhaps and see how I go? Mat x

Mat48

Hi Mat

I think you should ask your doc for a referral to a neurologist, I have a very rare neurological condition and I can relate to all of what you are going through and it 'aint funny don't think for one minute it is in your head, the numbness can also be caused with neurological conditions, hope you can get this sorted out soon..................Marie

Thanks Marie. I'm still ragingly static and fizzy today - if anything slightly worse each day. I explained to my GP that prior to RA kicking off about 2 and a half years ago I was experiencing these very bizzare surges of deep heat in my wrists and then elsewhere. I asked here there and everywhere, from menopause sites to here if others have experienced this and the only people who popped up where from this forum and explained it as inflammation and part of RA. So now that my rheumy is saying that I have no swollen joints and my ESR is down to 28 it is probably not inflammation I'm having to look elsewhere.

The GP is separating the deep heat surges from the pins and needles but I really do believe they go together and are to do with my nervous system not to do with Methotrexate. I have blamed the MTX for many things but these pins and needles and deep heat have only been present when I've not been on MTX or have only been on a low a dose.

Now the deep heat is everywhere with the pins and needles and I strongly believe something else is going on. If it carries on much longer I will phone my GPs and ask one of them if I could be referred to a neurologist. I have also suffered from a diminished sense of smell and on the higher dose of MTX I had this foul taste - which is why my GP thinks my neuropathy is being caused by MTX. It is all very perplexing and I won't deny I'm a bit worried because undetected B12 deficiency is potentially dangerous and can affect the brain ireversably. But mine is fudge just now anyway so this may not make much of a noticeable difference?! :roll:

stickywicket

Sorry, I can't help at all with this, Matt. It's way outside my experience. I wish you well, though.

Mat48

Thanks SW. I'm glad its well outside your experience and I have been bottling away because I don't think its an RA issue unless its a very rare side effect of MTX as my GP thinks. I used to find these heat surges quite unbothersome when the began about 3 years ago but now they are accompanied by pins and needles and stinging they don't seem so benign somehow? Ah well they probably are harmless enough and I'm not in pain - just very stiff - so I'll keep trying to grasp what may be going on with the thyroid UK forum and my GP's if I can rule MTX out and RA too. Take care Mat xx

stickywicket

Just a thought. I don't suppose menopause could be a factor?

Mat48

I'm really hoping so SW. I'm actually through my meno - it came quite early as did my late mother's. My GP thinks that my meno triggered RA and may be responsible for the heat surges I have been experiencing for 3 years now but they started in my wrists and then in my feet and legs and this is certainly not how most people describe their hot flushes. The GP also says she's really hoping that the RA might die away once my meno is really over properly. Here's hoping but its certainly not what my rheumy is expecting to happen! He says RA is almost always for life.

If I knew for sure it was Meno then I would be able to live with all this fizzing and numbness better I think - and wouldn't have to contemplate coming off MTX either. But I have no other meno symptoms and haven't had a period for 3 years now and my FSH was very high last time it was checked indicating post meno. Apparently symptoms of meno can worsen for several years after women cease ovulating etc but I did go to the big meno site on several occasions (that's how I discovered this forum) and no one seemed to recognise heat surges of the type I was experiencing. Mat x

Boomer13

Hi Mat;

Just one other thought, you don't have Raynaud's to go along with your RA do you? Maybe you don't know what it is: vasospasms of arterioles/blood vessels in the extremities. I have it and it's been blamed for some of my neuro stuff. It causes "vaso-instability" and The logic there being the blood vessels in extremities clamp closed which causes nerves to be starved of blood flow and creates neuro symptoms, tingling etc. It can also cause the reverse: blood vessels opening wide and causing something like the heat surges you describe. Just a thought. Symptoms are very cold extremities and visible color changes to the skin on exposure to cold temps or stress. It's very severe in myself, so I'm sure you would know if you had it.

Mat, I have never been able to find out if the root of my problems was a shortage of B-12. My bloodwork for B12 levels has always been normal and I'm always anemic. I took the B12 tablets for about three months. In that time I was so desperate I started Gapapentin too, so I don't know. I was just so relieved to have it under control; it was really awful. I think my problems are related to something other than B12 as I haven't progressed neurologically. A friend with pernicious anemia has full-on dizziness and progressive neuropathy. I think the neuro symptoms would have progressed in myself if it had been B12 related. I can't see your GP being upset with you for taking it, especially when you are so worried about folic acid masking a deficiency. Like you say the damage can be permanent. However, it may make it tough to sort out the cause of your problem if GP does take you off MTX at the same time. If it improves you may not know if the MTX was causing your symptoms. You could mention your concern and see if she would give you B12 injection before doing the off-MTX trial. I think that you would improve quickly with the injections so it would show if a deficiency was the problem. You need to check with her though, I sure am not qualified to advise you and I don't want to advise you to start your B12 if it confounds figuring out whether MTX is the cause. I do think you are wise to find out soon rather than risk permanent damage. Your GP should understand your worry about this.

Sorry this is long, again. I'm concerned for you as I remember how scary this was for myself. In my case my brother's illness (he has a demyelinating neuropathy) was always looming + the high MCV/ low B12, etc. It was excruciating both in symptoms and in not knowing what it was. I really have to say it was never figured out in myself, even though I saw neurologists, multiple GPs and I kind of live in fear of it returning. For now it's not progressing, so I try not to worry.

I can't comment on the meno as I have yet to experience that wondrous part of womanhood :roll:

Have your symptoms worsened today? Numbness worse, clumsiness, dizziness or tripping? You need to watch for these.

Take care,
Anna

Mat48

Thanks Anna you are really helping me with your suggestions. I hadn't even considered Raynauds. I have had a lot of trouble with my inner thermostat since all this RA and meno and MTX but then I did lose a lot of weight at the start of it all too so I half imagined this to be responsible. I find my hands do get very cold often and I always used to have very warm extremities so this is new. My fingers do sometimes go white and even blue on occasion and I live in gloves in winter now. But since the spring and summer of this year it has not been so extreme so I thought I must be adjusting to my thinner self at last.

In October we stayed in Tuscany in a heat wave and I still had to wear gloves and socks at night and couldn't bear the cold water of the pool. My GP and rheumy both have said Raynauds without testing me at all - just shrugged. The same with my dry eyes and Sjogrens. But I had discounted both - beyond perhaps a very mild version of them that goes with autoimmunity. I phoned someone on the Sjogrens UK website last week and she was really helpful but said I must push to see a neurologist.

It is all even worse today - absolutely raging and I keep scratching now to no avail. Even my head is tingling tonight! I don't really get dizzy much and have no vision impairments beyond tired eyes and having to play with my varyfocals to see properly sometimes because of this. I use eyedrops when I'm like this and they help.

The overwhelming issue is the subcutaneous prickling and numbness everywhere. The numbness is mainly in my calves and feet (diabetes has been ruled out) and it feel as if I have dipped my legs in a scalding hot bath and then been plastered in an icy cold cream all the time? Its really unpleasant rather than painful. The rest of me feels as if I'm wearing rough cloth with tiny ants in it after having a scaldingly hot bath first! If this sounds OTT to others I do promise it's not.

And the other feature is severe depression which really isn't me at all.

I'm tired out from the Amitriptyline and teenagers coming in all hours but even so this seems excessive for me. I have also been having quite heavy nose bleeds and the slightest nick or blow sets them off but I told the GP about these and he could see nothing inside my nose to explain this. The other day I scratched my nose on the outside and my nose just started gushing blood spontaneously!? Sorry if this is really yiuck! :oops: I'm probably just becoming a hypochondriac. But it does feel real and pretty horrible I must say and I'm very relieved to have someone who has suffered similarly and understands my anxiety about it all. And my sense of smell has greatly diminished over the past two years so I struggle to tell if things are burning now and have to ask husband and sons to tell me when the milk is off. All vaguely neuro stuff and I feel more of a basket case just now than a person with any form of arthritis!

Mat48

Ps I didn't mean that I was glad you had suffered too really because its really horrid and I wouldn't wish the symptoms or anxiety they generate on anyone else but its a relief that someone else can understand and believes me. I do feel I'm going nuts. Xx

Boomer13

Hi Mat;

I knew what you meant, no worries You actually are the first person I've chatted to who had something similar. I thought I was the only one with such weirdness!! I have had a nosebleed problem like you described, so don't worry you won't gross me out. I don't know much about Sjogren's, or loss of sense of smell; haven't experienced that. After what I went through, I definitely don't think you are a hypochondriac. It is a really, really awful thing to go through. So do take care of yourself. Now the wearing of gloves and extra socks, I do that most of time year round. I can't seem to even take a cool breeze.

You know, I did go to the local emergency dept one night (in the most ghastly pj's :oops: !!) because I was lying under only a sheet and it really felt like the coarsest wool blanket I had ever felt, or sandpaper even. I thought I was having an episode of psychosis. The doc there told me that these kind of symptoms can cause extreme anxiety. So, I definitely don't think you are nuts or even excessively worrying. It is extremely scary and I would much rather have a flare of my joint pain than go through that again. Absolutely horrid. I felt it was impossible to convince anyone that it was as severe as it was. So you definitely have my empathy and help, if I can.

Just keep in mind that you are having a huge amount of sensory input from all of this and are bound to feel very stressed and overwhelmed, scared and depressed. All perfectly normal reactions.

Hope you are feeling a bit better soon and I'll make sure I check back regularly.

((()))xxAnna

Mat48

Thanks Anna - you're a star!
Matxx

Boomer13

How are you today, Mat?

Mat48

A bit better thanks Anna! I'm not sure if the prickling has lessened or if I've just become used to it but my spirits are lifting. But it is day 4 since injecting my MTX so I'm observing.

I've decided that I would probably have balance issues and vision disturbances if it was anything more serious? The deep heat isn't unpleasant and I'm trying to become equally affectionate about the tingling. It is quite tickly though! The Amitriptyline knocks me out so I'm getting very behind on my work as a result. I'm wondering now whether my RA is even an issue worth taking MTX for because I am completely free of swelling. Will see how the week unfolds and what my next bloods reveal a week on Wednesday. Also will hopefully find out the rheumy suggests re neuropathy in his letter to the GP at the same time. Thanks for being here for me it means loads. Mat x

Boomer13

I really hope you have an ok week with no worsening or new neuro symptoms. I agree you should be really concerned if you develop dizziness/balance issues, vision troubles, tripping or wrist drop. These would be signs it is affecting more than sensory nerves.

Best wishes, let me know how you make out

xxAnna

Mat48

Thanks Anna - what is wrist drop please? X

Boomer13

Wrist drop is picking something up and having your hand-grip let go without your intention. It is a pretty common symptom of things like carpal tunnel syndrome and swollen joints but can happen with other neurological problems too.

Anna

Mat48

Thanks for explaining. I'm starting to feel too healthy for any of it again now Anna 8) Seriously though pins and hot needles are quite challenging enough for me for the time being. Xx

Boomer13

You are very welcome Mat. Anytime and it does help me too, as I feel less like it was a completely useless and meaningless thing to go through. If I can be a little helpful I'm glad!

Anna xx

villier

Hope you are feeling a bit better Mat...................Marie x