Losing balance and feeling rough with MTX

[Old_Sceptic]

Hello all,

I hope everyone is doing as well as can be expected.

I started taking Methotrexate (MTX) last September, and apart from the initial few post dose days of feeling c*** it seemed to be going quite well. I recently found out that a large nodule in my right lung has started to shrink with the MTX so good news there thanks to MTX 😹

However since I started the MTX I have slowly been having more and more difficulties with my balance. I didn't notice myself but my partner has been taking notice of any changes in me since I started it. Good job they have as I hadn't put the two together 😕

I'm fine sitting down but bending over has a tendency for me to keep going forwards, which has resulted in a couple of painful contacts with the floor!

I'm seeing my consultant and my GP soon, so just wondered if anyone else has experienced anything similar? It would be good to have some ammo for their standard "oh never heard of that before!" standard response 🙄.

Take care and I wish you all well

An update for the kind people that replied to me 😀

I have a new consultant that kinda a sucks, but hey ho

I have now seen the GP and consultant and they both insist that neither of my issues are related to the MTX as they have never heard of it 😠 I explained that I know people that actually suffer the same as I do and they even denied side effects listed on the MTX leaflet. It doesn't seem to matter how you protest once they have decided that's it. What's the point of leaflets and the BNF if they refuse to believe them ⁉️

Off to find another consultant and take part in research - perhaps I'll get listened to that way.

Good luck to you all and don't let them grind you down 😀

[welsh12]

Have you had your bloods done? I have a few balance issues bloods levels raised awaiting to hear if deficiency of b12 and or folic acid as only take it once a week

[Old_Sceptic in reply to welsh12]

I make sure to get bloods done regularly and regularly query the results as a significant number of the markers are out of range. I'm told that they are standard for a Sarcoidosis sufferer, so I'm trying to dig further

I take folic acid for the three days after my MTX dose as I wasn't doing well on just the one.

I hope you get your levels back soon and they can sort things for you soon

[welsh12 in reply to Old_Sceptic]

Thanks see recent post my bloods out of range but the rheumatology say not they seem to have a different guide to one on patient knows best.

[AgedCrone]

Both Mtx & Pred can affect the Central Nervous System …… so go carefully before you are able to see your GP/Consultant .

Every time you feel an incident coming on….try to sit down…even on the floor….then when things settle…. I’m presuming you just don’t go flat out with no warning?

Then tell your partner or anyone who is with you…how you felt prior to crumpling.

I have had similar experiences & living alone, having to try to recall how you felt when you actually get in front of your doctor ….it’s quite difficult to recall so making a note at the time might make things clear for them.

My symptoms all resolved themselves. So try not to worry too much.

[Old_Sceptic in reply to AgedCrone]

Thank you very much for the information. Only been flat on my face once so far but being really careful now. Dug a walking stick out for extra support last night

Fingers crossed for now

Sorry for previous corruption - sent it from my phone earlier

[Haired in reply to Old_Sceptic]

Good morning ,

I know we all have different symptoms so just letting you know what recently happened to me. Unfortunately I could not take Methotrexate (felt fatigued, brain fog etc all the time). Now on Rituximab Infusions 6 Monthly and Mepacrine folic acid, Vit D, B 12 injections 3 monthly etc.

I was recently in hospital as I had been feeling more dizzy than usual and had started to bump into things now and then. I started Blood Pressure tablets last year and had reduced amount I was taking over that period (to2.5 morning and night)as made me feel very dizzy, could not stand for very low or dizziness breathlessness got worse. The hospital said I had postural hypotension low BP when going from sitting or lying to standing .cut BP tablets to 2.5 morning this has really helped not feeling so dizzy/ breathless just normal Lupus /Sjogrens fatigue /brain fog etc.

As I said we all have our own unique symptoms and of course reaction to medications!! Sorry for the long reply. Although I had been back and forward to GP I was putting it all down to my Lupus probably not speaking up enough ! Good luck with consultant/Dr.

[Old_Sceptic in reply to Haired]

Good evening,

It's true we all have different symptoms but its good to know that we aren't the only one that's had various issues. I often feel that doctors treat us like morons that don't investigate or talk to others, so that they can pressure us into X or Y because it's cheaper than Z.

I think we have to speak up and demand to be heard. In my experience in the NHS both as a patient and as an employee, its those that make the most noise that get looked after first. I don't like it and its sad we need to do it but I'm often fighting my 94yo mums corner because she thinks we should just be quiet and wait.

Sorry for the ramble and I sincerely hope that things continue to improve for you

[welsh12 in reply to Old_Sceptic]

I agree with you I worked my whole career for nhs and social services

[Haired in reply to Old_Sceptic]

Good Morning agree with you regarding speaking up. It can be difficult when we start on this journey as there are so many symptoms and medications to adjust to.

A good few years down the road I now realise that Drs and Consultants do not always recognise symptoms we mention like breathlessness,,stomach, bowel etc as this may not be their area of expertise. It’s as you said we sometimes have to push to be referred to someone who deals with that. I’m based in Dublin so our public Health system is called HSE HERE WHERE THERE ARE LONG WAITING LISTS. I have Private Health Cover ( very expensive) which means see Consults every 6 month or sooner if things change but even with this you have to speak up. I always bring my sister to Apts ( brain fog and memory!!) and have list of questions. Unfortunately I have never managed to meet up with anyone who also has Lupus they are the only ones who really understand this invisible condition . Good to get all the information from others on here.

Have a good w end

[Happy5]

I do get what I call light headed when I stand up ha everything checked out by GP and all was fine. I never put it down to MTX as been on it for few years, so not sure. I just take more care when standing to make allowance for it. Not experienced it recently, when I did weather was warmer & I realised I wasn't drinking enough which does effect BP so upped my fluid intake which helped.

Not sure if any of this helps but that's my experience. 🙂

[Old_Sceptic in reply to Happy5]

Last reply seems to have disappeared - sorry

It all helps thank you as new knowledge is always welcome.

I drink litres daily but never seem to be properly hydrated - well according to basic tests

[Haired in reply to Happy5]

Hi I know what you mean about fluids I do have to remind myself to drink . Does decaf tea count as fluid intake I take it black? As days are getting brighter and slightly warmer photosensitivity is ramping up and notice I get more thirsty

[Sebastian247]

I've been on MTX since 2021, and also have bilateral vestibular failure, so my balance was already rubbish.But I do feel since taking MTX my balance has been even worse, but in a slightly different way. Its very hard to describe but for me, poor balance, brain fog and fatigue are constant feelings. I'm just not sure if it's MTX, the RA, or something else.

I take folic acid 6 days a week. Good luck with the appointment.

[coralflux]

I have been on MTX for 3 years. It definitely feels like my balance has been affected. I do yoga and find it very hard to stand on one leg. I also can get dizzy if I change from supine to sitting or sitting to standing too fast. It is listed as a potential side effect of MTX. I take folic acid x 4 during the week. My bloods show raised packed cell volume, raised MCV and raised MCH. This may be relevant - it may not. I have given gallons of blood over the years but no doctor wants to discuss my results. I still have not seen an NHS rheumatologist since (private) diagnosis. In the dark.