Need help please: Last year I was on MTX 10mg and folic... - NRAS

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Need help please

Hustler profile image
14 Replies

Last year I was on MTX 10mg and folic acid 5mg six days a weekend apart from hair loss was ok with it. Then I had a skin cancer on my neck and subsequently had it removed the same week three days after last MTX dose. Unfortunately my wound became infected within 48 hours and stitches dropped out and was told to stop MTX until wound properly healed with nurses changing dressings twice weekly. When fully healed and and feeling ok I thought maybe ok on no meds so for last two months not on any Meds for PSA. A few days ago My big toe to foot joint suddenly swelled and became unbearable to put weight on it and shows no signs of improvement making me realise this maybe a flare. I have never had one before (if this is what it is) so not sure what to expect how long it lasts and will it improve over time as walking is very difficult as broke little toe on same foot in two places three years ago and cannot bear weight on them. My question is I think I may have to go back to MTX but dreading the hair loss as My hair was very fine anyway but I am waiting for covid and flu booster as Dr informed me they are waiting for supplies still and have to wait and I don't think I should start MTX until after these injections. I am 67 female and not sure whether resting it will help or trying to use it as normal will help most. Any advice would be great cos just living on paracetamol at the moment, trying to look after disabled husband and hobble around with young dog.

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14 Replies
medway-lady profile image
medway-lady

Talk to your GP as and we can’t give medical advice but might it be gout ? It’d be worth just asking as it’s treatable and if not then contact your RA team or do so anyway to get some pain relief. I hope you find some help asap. X

Hustler profile image
Hustler in reply tomedway-lady

Many thanks for replying, I never thought of gout and know nothing about it other than my mum had it once and said it was really painful. I will look into this as I'm in UK and Gp's unfortunately where I live are almost non existent.

medway-lady profile image
medway-lady in reply toHustler

I’m in UK and it’s same here. X people are getting huge phone bills as waiting in queue for over an hour. It cost my friend over £12 so difficult these days.x

Hustler profile image
Hustler in reply tomedway-lady

Well managed to see a practice nurse today and she thinks it is gout and I have to have a blood test in a fortnight as they can't do this when it's flaring. She has given me some anti inflammatory gel to use three times a day too. So thanks again for your help.

medway-lady profile image
medway-lady in reply toHustler

I’m glad to read this, and really hope the gel works. Xx

GordonEdin profile image
GordonEdin in reply tomedway-lady

Non medical comment! If you are running up £12 bills for phone calls to normal numbers, there are lots of mobile phone SIM contracts which will give you unlimited calls for probably 5 or 6 pounds per month. Landline calls are very expensive during the day unless you have some kind of deal. Mobiles can be much cheaper.

Hopefully your doctor is not using a premium number - that would be outrageous.

Langers2 profile image
Langers2

have you tried taking collagen tablets or powder daily. It’s worked wonders for my hair and nails, so much stronger. I have yet to see benefit to joints but we will see

Hustler profile image
Hustler in reply toLangers2

No I haven't but I have bought some marine collagen tablets and also biotin to start as soon as I feel back to normal, so fingers crossed it helps.

Runrig01 profile image
Runrig01

I had similar thoughts to Medway lady, that this could be gout. I’d try and see gp for bloods to check. I’ve been on MTX 7yrs, and similar to you my hair got thinner, thankfully I have a lot of hair, so others don’t notice, but it’s baby fine and won’t stay in style. I did find though that it stabilised after a while, and don’t get any other side effects.

Cheylann profile image
Cheylann in reply toRunrig01

Does MTX help all your pain and what condition do you suffer from.

I have tendinopathy and PSA and due to start MTX 20mgs soon so interested in hearing from you as you've taken it for so long.

Appreciate it.

Hustler profile image
Hustler in reply toCheylann

Hi yes MTX did stop all my pain and made life more bearable. I have PSA in the latter years after suffering with psoriasis for many years. I was on 10mgs and always took mine with my evening meal weekly as I found it didn't upset my stomach in any way.It took at least three months to have any effect and I still had nail psoriasis but scalp and body were clear and foot pain in particular was gone. The down side for me was my fine hair became even thinner and wouldn't stay in any style ( just stuck out and dry ) for more than about 30 minutes. Also I was told to avoid the sun and if I had to go outside in sunshine then to use factor 50 or any good sunblock. As I have an active puppy needing a walk and young grandson to take and collect from school . I found it was not only expensive but no matter which brand it made me feel sticky and itchy and nearly always bought on a heat rash.

Runrig01 profile image
Runrig01 in reply toCheylann

I have ankylosing spondylitis. I use a biologic for the spinal symptoms, but it doesn’t do much for the peripheral symptoms. Most of my joints give me issues, shoulders, elbows, hands, hips, knees and feet. I also get a lot of enthesitis and tendonitis. Currently had severe tendonitis in my knee, that only lets me walk around 120 steps before the pain is excruciating, this has been going on for 14 weeks. I’ve had to buy a wheelchair to get outdoors, whilst I wait for rheumatologist to do a steroid injection. The MTX helps with all of them, except this tendonitis 😂. I’ve just withheld the last 2 weeks as I had my covid vaccine, and they advise you to hold off, to enable your body to produce more antibodies. The last 2 nights my peripheral joints have given me a lot of pain, so I’m glad to restart tonight. I tolerate it well, so take 25mg orally.

Hustler profile image
Hustler in reply toRunrig01

Thank you I managed to see a practice nurse this morning and she thinks it is gout but will do blood test in a fortnight to be certain as it doesn't show properly during a flare. I am going to try some Marine collagen and biotin shortly to see if this helps as my MTX nurse said not to take anything other than paracetamol whilst on it including vits etc.

Cheylann profile image
Cheylann

I too have psa and been prescribed MTX injections. I stopped them as had an op and due to restart soon.

For my pain which I get in my tendons around the joints especially my elbows I use ice packs 20 mins 3 x per day and I between rub voltarel gel on them. You could also try alternating with heat. But if you take the paracetamol every 4 hours and rub the gel all throughput the day as well as ice it should help. You need to elevate and rest that foot.

I am 65 and also have a very energetic dog but she is 8 so not young so I feel your pain. 🤣

Ice and rest is your best bet.

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