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Methotrexate

Hi

I take methotrexate and have weekly blood tests. Ive been on it now for a few months. It came to my attention that alongside bloods, individuals prescribed methotrexate should also have routine examinations of the lymph nodes.

Does this happen? Neither my gp nor rhuemy has ever mentioned this to me.

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Never had mine checked while I was on it

They never mentioned it at all , strange

Which lymph nodes do they check ?

Half are in your abdomen I guess you are thinking of breast and arm

Lymph nodes

On bio Logics now as methotrexate ended up damaging my liver

Strange they are giving you weekly blood tests

I was on 25mg max dose and only ever had monthly tests sometimes they will go to 30mg very rare though

Maybe they think you are a high risk then

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Hi

Thanks for your response. I am on 20mgs going up to 25 Mtx weekly as well as enbrel but don't think I am considered any more at risk than the next person?

I have been having bloods taken weekly since beginning Mtx and every month re biologics ?

Marie

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Hi

I'm on mex for about 2 months now.I get bloods done weekly my dose is 7.5 very low

But last bloods showed that my liver is getting damaged and if it gets worse they will need to stop it or replace it with something else.

My friend is on 35mg weekly and she is fine on it.looks healthy and has lost slot of weight with mex.

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Not sure Eiram50 is necessarily considered high risk dobsey1111. When we're started on a new DMARD or have a dose increase on one we're already taking it's normal to have more regular drug monitoring bloods, usually for approx the first 2 months. Some Rheumys prefer weekly, mine prefers fortnightly. Once they're satisfied there are no issues then we go on to/back to regular monitoring, usually monthly.

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I've never had my bloods checked more often than monthly, myself. At one point (early on) I think my bloods were only checked quarterly (every three months). I've never had my lymph nodes checked either.

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It could be different in Canada Karen. Similar to you when I lived in Spain I only used to have 3 monthly bloods, taken a week before each Consultant appointment. I didn't have weekly or fortnightly bloods for an increase in dose or new med either but I was told in those instances if I had problems to ring. I never needed to so don't know for sure but I think I'd probably have been told to collect a bloods request form from Rheumatology, go down to Haematology, have them done again & probably instructed what to do if they were awry, maybe even given an extraordinary appointment. I didn't have lymph nodes checked there either.

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I had been on Methotrexate for 30months at first I was on 7.5 then a few months laters during that time I had bloods taken every month so they gave me a higher dose of 10 that was going nicely when it went up to 12.5 my blood was taken weekly I had to go right back down to 7.5 as my kidneys couldn't cope and my white blood cell dropped down to 2.7 So for 3 weeks I attended the clinic but only to give blood until such time as the Drs though my system could manage to take the injection. I have now been advised to take it in tablet form waiting on my own surgery to give me a prescription. The other tablet has Septrin and I am allergic to Septrin as well as penicillin. I am depending on these plasters I have at the moment Has anyone taking the tablets found any side effects with them

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Wow, maybe the reason I didn't get them so often is that my lab results didn't show such sensitivity to the drugs?

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I did have examinations but not realised it was lymph nodes they were checking ,i am on biologics now ,etanercept ,still a close eye kept on bloods ,but the difference i my health is amazing

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That's really good to hear. Long may your good health continue.

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Well I've been on it 3 years 20mgs injection and it has infected my gallbladder. Complete agany😡

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Oh gosh, must be painful.

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My lymph nodes have never been checked either. I'm on 25mg mtx and just had sulphasalazine added in this week. Bloods every fortnight and if I feel like a pin cushion I really feel for you having them weekly. Hugs

Jan

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Thanks Jan . It's amazing how quickly we become used to being pricked and prodded!

Hoping things are well With you.

Marie

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Nope, never had that with any of my Consultants in 8 years on MTX but I know it's listed as a side effect to report. I do check mine anyhow as I've been troubled with them eons ago (under arms & groin) way before RD but my previous GP here checked them & said they were just hormonal. What concerned me was they were quite a dull ache, why it bothered me a bit. Nowadays I rarely get them, one positive of becoming older disgracefully!

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I've never had mine checked.

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Not me 😕

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I've been on methotrexate (20ng per week) for past 25 yrs. I initially started on weekly bloods then progressed to monthly, they now prefer two monthly but have agreed I can continue with monthly, I have regular consultant check ups so lymph nodes is new to me. It may already be covered in the blood Test

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Hi Marie,when I was on mtx I was having bad mouth ulcers so much so my Rhymy sent me to see a consultant at the dental hospital.oneof the tests the did was a ultrasound on my neck,I understand this was to check the lymp nodes . My new Rhemy suggests that if I suffer any set back they start me on a low dose of mtx by injection to go along with the Humira.

We are getting settled in our new home and walking our new dog everyday along with a swim most days.all in all I'm feeling pretty good long may it last.

Regards Mike

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That's interesting re ultrasound Mike. My plan is to discuss with gp on Friday.

Great news re house move. Sounds fab to be out walking the dog and enjoying things. Beat of luck going forward.

Marie

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That's interesting. Do you have any idea what is meant by checking? I.e. is it more sophisticated than feeling the lymph nodes in neck, groin & armpit? And what is it that is being checked for? I always assumed that the blood tests would show up many problems with blood cells, lymphoma etc?

I'm now on blood tests every three months for methotrexate......weekly sounds a bit of a liability. I was only on weekly for the first month, and then monthly for a bit, then 2 months and now every 3.

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Hi HH

I'm not certain exactly what any examination would entail but will have the discussion with gp around this, as well as establishing any need for it.

In terms of the weekly blood tests, I've given this more thought and I think that it may have dragged on this way due to starting at 10 mg, increasing to 15,20 and now 25 as well as some concern relating to my liver at one point.

However, it is inconvenient at times, as well as a pain so again, I'll be discussinnthe need for this continuing with gp this week.

Hope things are well With you.

Marie

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Hi

I'm on MXT but they have never Mentioned anything about lymph nodes to me.

I will ask at my next appointment as I've had 2 siblings who have had cancer in the past.

Have a nice day

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Have you asked your GP/Rheumy why you are still having weekly blood tests?

Maybe somebody just forgot to tell you,you can go monthly now?

Do you know of the tests have shown any cause for concern?

I think I remember I had weekly tests for a couple of months, then monthly, & then 2 monthly for years. Never any mention of Lymph node examinations.

Get on to your Rheumy nurse & ask her advice.

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Same as everyone else. On 25mg injections and have blood tests every month. Never had lymph nodes checked. Been on MTX since Dec 2014. Would be interesting to know reason behind both the weekly and the lymph nodes...

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I had mine checked once by rheumatology consultant before Starting methotrexate . Not sure whether she will check again until I see her next week. The lymph nodes they check are under the arms arms.

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Only under the arms are checked?

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Yes. Consultant only checked under arms for lymph nodes.

But checked all joints for swelling and joint pain was very thorough.

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I have 2 monthly blood tests (on subcutM/X) but never had lymph nodes examined. As far as I understand it the blood tests should show any lymphatic system problem they're looking for and examination would be unecessary unless other symptoms arose (infections etc) which would set off alerts. Routine assessments only happen once a year where I am anyway.

Just reminds us that we need to be aware of any changes in our bodies and not ignore them - feeling for lumps and bumps etc.

But that's true for everyone..

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Hi everyone and many thanks for all your responses.

I am uncertain why I am still having weekly bloods and have mentioned to gp that I'd expected to be monthly by now. I know there was a bit of concern re liver and mouth sores and I have ongoing dizziness but really, I think things have mostly settled with the Mtx - I have my bloods done again Friday so I will raise it again with gp.

In relation to lymph nodes. My understanding is that this was not Soley reliant on bloods but a regular physical examination too.

From your replies , it would seem this may be the e caption rather than the norm. Again, it is something I will raise next visit .

Thanks again

Marie

.

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Marie the nurses will have to keep taking blood from you until there is an increase in your white blood cells and if it is effecting your liver that is serious they may drop the amount of size if it is 10. They may take it down to 7.5 until everything is back to normal. I hope you feel better doon

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Never had mine checked either.

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I've never had my lymph nodes examined. I'm going to ask to have them looked at as I did a quick examination and I think I feel a lump...perinod or what? I don't even know the exact spot they are located. lol

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I feel that if things are flagged up in terms of what are considered routine checks given the meds we take , then it's wise to have the discussion with medical professionals around it?

I'll let people know the result of my discussion with gp .

If I were you, I'd definitely get it checked out sue . Hoping, besides this, things continue to go well for you?

Marie

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Yes, I think I have to get this checked out. I just noticed a soft lump between my breasts on my sternum. Maybe it's fat? I have gained a few pounds.

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Yes, best to have it checked. Best of luck with things.

Incidentally , I too have gained about a stone this past year! Not as a result of eating more ( maybe naturally physically doing less?) but pretty certain it's linked to meds - bummer!

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I wish I could blame the meds. I did change my diet over the last year. I went from being a vegetarian to a closeted vegan...lol

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Crazy thought...how many people wish they had a lump of fat?

Thanks for posting this. I'm not going to panic as benign cysts are quite common in my family. I will have it checked out to make sure

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Hi can I ask where you saw this info? I just started mtx and specifically asked about lymphoma as had read mtx increases risk of it and my sister had lymphoma at 39. Was told whole cancer risk is increased by RA, which was not at all comforting, nothing mentioned about checking lymph nodes.

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Has anyone like me refused treatment? Ive had RA for 25+ yrs. My brother in law's been on methotrexate for 20 yrs. He's had 2 heart attacks and now has Parkinson's. He also got shingles 4 years ago and it took him ages to recover and still has nerve pain. Although his RA is under control ( or burnt itself out), it's put me off taking it. I can't understand why you'd want to further damage an already malfunctioning immune system. Needless to say, I'm not popular among the medical profession. :/

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Not sure if you are asking me this question, specifically.

However, if so my answer is simple - after trying everything and continuing to eat well, exercise sensibly, drink little alcohol etc my RA and AS couldn't be brought under control. The damage to my joints has been significant ( both hips replaced, both knees, tendons cut and re attached, toes pinned, bone in foot shortened- and I now need to have elbows replaced).

Not to take biologics and methotrexate would potentially mean further damage, poorer physical capacities, poorer quality of life; I'd struggle to function very well at all.

That's the pay off, I guess.

Marie

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