Starting injections on Tuesday for mtx: Am at last... - NRAS

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Starting injections on Tuesday for mtx

Carolsos profile image
27 Replies

Am at last starting injections on Tuesday as am continually being sick and feeling sick and constant tummy pains. Does anyone else have these symptoms on Mtx tablets? I am a bit apprehensive about going on injections but cannot cope with being sick all the time. Do u get the injections from the chemist or the doctors? Do u still feel sick on injections? I hope not. This week has been a bad week for me. Been so sick and have not been able to have time off work. When I told work was not feeling well my boss said your sick again! You were only I'll a few weeks ago, even though then I did not have time off. The last time took off work was late October when found out had this horrid dease and had to take 2weeks off as could not walk. Sorry for going off the thread but was shocked what my boss said to me that day. Is RA CLASSED as a disability do u know? Am hoping you all are having some pain free time.

Carol 😊

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Carolsos
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27 Replies
JuneRose profile image
JuneRose

Yes I dif and never took another one was put on Arava but now they are talking ant TNF I'm not sure they have given me time to think . MTX doesn't work for every one you are more than likely sensitive to s lot of meds without knowing

Cat111 profile image
Cat111

I'm new to all this too ive been on MTX for 4 weeks now and been sick and constant nausea. After phoning the nurses as I couldn't take anymore of it they told me to have a week off it and start on folic acid every day apart from MTX day which I start again next Tuesday. Fingers crossed it will help as I couldn't even cook for my children - everything was turning my stomach. I couldn't even enjoy a cup of tea so I thought God this is worse than the pain of RA. I was crying out for diagnosis and any drugs to make me feel human again but never expected to free of one thing but then had to deal with something else.

I have heard injections are better as they bypass the stomach.

Fingerscrossed for you and let us know how you get on. X

what a terrible time you are having I have been very reluctant to take the strong drugs mtx is used in a stronger form to treat cancer I would have considered this if it was a short course of treatment but it a big step to take, as for you working with the condition you do well, your boss is out of order no one wants to be ill you should talk to one of your care team hope you get sorted soon

Giggle profile image
Giggle

Hi Carol, firstly I had experienced sickness from MTX tablets and was changed to the injections when I was first diagnosed. Do you take your folic acid 6 days out of 7? Because that does help reduce the nausea a lot. I stopped mtx for a few years but am back on it now after having another baby last year. I don't have the sickness now which the nurse said a lot of people find. I hope it passes for you because it is awful I remember crying and feeling down because of how sick it made me feel. Peppermint tea helped a little I don't know if you've tried that?

Secondly your boss is bang out of order. If you are ill you are ill and YES RA is covered under the disability discrimination act. In fact his/her comment about you being off again could be classed as bullying and intimidation. Saying that though, sadly I don't think enough people have an understanding of RA and how it is.....They also have all had an aunt or far off relative who had it, who tried a magic potion ( probably made of cats pee) and were cured miraculously. Which obviously they want you to try. (I'm joking but I'm sure you know what I mean).... I don't work now but when I did my employer was very understanding. There are leaflets or there used to be, for employees to give to the employers about RA and how it can take some time for treatments to work ect. It might also be worthwhile contacting the job centre. When I was first diagnosed my employer was brilliant they were also in touch with the job centre who sent out an enabling person to talk to me about any adaptations I may need to help my return to work. I don't know what you do but my job had been partly office based partly community. They looked at things like the key board and pens, having a dictaphone instead of note taking and even a foot rest. Your boss may just need educating a little more. He should also be grateful you haven't had more time off. When I was first diagnosed I had over 6 months off which isn't uncommon.

I hope you start to feel better soon and try not to get to stressed about work.

Lyndsey

Carolsos profile image
Carolsos in reply to Giggle

Hi Lyndsey, in Dec2013 I was off work for 3 months with bursitis and stress, but did not know any of this was to do with RA. I went back to work in Feb 2014 and just carried on. It was only after having to go back to the doctor with constant pain and infections and also my fingers swelling up that they did a blood test and found out in Aug 2014 that had RA and saw the consultant in Oct of that same year and was put on mtx. and following that in Oct 2014 had to have another 2 weeks off work cause could not walk with swollen painful legs and the doctor insisted I have time off that of course I took it off and was pleased to as was in so much pain.

But since then have been ok, apart from this sickness and stomach problems, but can count as 4 different occassions when had to go to work after being sick and feeling sick cause could not contact my work to ring in. I work as a Breakfast chef so am up very early in the morning. work has said if am sick to ring in the night before, but have tried to tell them am not sick the night before only in the mornings and that is why my boss is threating me with changing my job and putting me on different hours. as in going into work at 4pm and finishing at 11pm at night which I dont want.! She had to send me home one day as was sick at work and told not to go in for another 48 hours but she made my life hell through this and is always throwing this at my face as in saying I am unreliable and she does not know if I will be going in. Before I had that time off in 2013 I never had a sick day in 5 years!

just need to rant, sorry Lyndsey.

I am hoping the injections help and am ringing my doctors up tomorrow for anti sickness tablets cause cannot go on like this.

Thank you once again for replying it has helped.

Carol x

..

Giggle profile image
Giggle in reply to Carolsos

No it's fine rant away I don't blame you for needing a rant. Your boss sounds awful and personally I think she is treading a very thin line. If you were to go to a tribunal about her attitude i'm sure it would be classed in a regular case as bullying and intimidation never mind a disability discrimination hearing. I don't think she can change your hours yet as the treatment is still fairly new to you and I think she would have to wait more time to be seen as justified in suggesting she will change them. I'd speak to the job centre anyway because they will know fully (or should) the laws surrounding discrimination and your rights. Citizens advice are very good too. If it's a large company and they have a HR department then you should make contact with them and make sure you note it down. I would start to keep a diary incase she continues with her attitude. I mean a diary of her comments and things so you have something on record. I wouldn't obviously tell her about it, but you need to protect yourself and it would help if things got worse at work and you need evidence.

i hope things get better for you

Take care

Karen77 profile image
Karen77 in reply to Carolsos

First let me say that I completely agree with the others - your boss is being ignorant and downright rude. Having said that, it is quite typical for your mornings to be the worst part of your day. That is sort of standard RA. A lot of days when I was dealing with stiff, painful, sluggish mornings, I felt almost normal come the afternoon and evenings. Even though you've always been an early bird, you may wish to consider trying the evening shift. It might be the compromise your body needs as well. You should take the time to educate your boss on RA. I know that was really helpful for me. They need to understand that so much of your "unreliability" of late is completely out of your control and that you're doing everything you can.

When I was first diagnosed, I didn't understand and was just waiting to get better. I read all those leaflets that said you didn't have to tell anyone (incl your employer) about your disease, so I always only told myboss the bare minimum. He got to seeing me as lazy and unreliable. He saw my late arrivals to the office as a lack of commitment. And yet, when he asked me how things were going, I would smile and say great!, even though I was deteriorating rapidly...

I changed assignments and when I did, I thought to heck with this and was completely up front about my RA. I explained it in detail ( rheumatoidarthritisguy.com has a great one-pager, but the NRAS leaflet is also bang on). I was up front about what I needed and was also clear that I didn't know what my future looked like, but that I want to be productive as long as possible. Being up front has allowed for some accomodations - ergonomic work station, ability to telework 80% of the time, and voice to text software. In my situation, it was much better to be up front and I think that allowed me the space I needed to get my RA back under control.

Good luck Carol, you're not alone.

Hi,I've been on methertrexate for over 10 yrs.im sick,banging head headache and migrane.I always feel unwell for a few days after I have take it and the injection has made no difference to me than taking the tablets but hopefully it could work for you.RA is a very debilitating disease which a lot of people are very ignorant to unfortunately x

oldtimer profile image
oldtimer

There is a leaflet that you can get from NRAS to give to your employer. I know they don't always read such things, but it's worth a try to explain your condition and the adaptations that may need to be made for you to continue working. Please be assertive with an employer who says "You're sick again!" stating that you feel ill with Rheumatoid Disease all the time but that you cope with it so that you can work.

Carolsos profile image
Carolsos in reply to oldtimer

Thank you oldtimer I will be more assertive, I am ringing up my HR tomorrow to discuss my RA and what I have and where I stand. just want to say you have all been very helpful and no matter what I ask of you all, someone always has an answer and want to thank you all for that!

will keep you all informed.

hope everyone is feeling good today. x

farm123 profile image
farm123 in reply to Carolsos

May be worth trying to refer to it as RD (Rheumatoid disease) rather than RA as without the 'arthritis' bit people appear to listen more to your explanation that it affects joints and has an all over effect rather than automatically assume it is something granny has (no disrespect to our older members intended) and it is only like that bit of a niggle they have in their finger. Farm

Karen77 profile image
Karen77 in reply to farm123

Lol. Wouldn't we all be rich if we got a dollar for every time we heard someone say, "oh yes! I have rheumatoid arthritis in my finger/knee/hip etc..."

It really is a matter of education. It just feels like the disease itself is such a burden already that patiently explaining it to every single person you meet is too exhausting to contemplate!

stbernhard profile image
stbernhard

Hello carolsos. So sorry that you've got so much pain, but believe me it will get better! I've been lucky to have a really good RA team. I was diagnosed in 2009 and like you to start with I was crippled. For month I couldn't walk or even hold a knife and fork. After a few month of treatment, including MTX I got back to being a human being again. MTX tablets can have a horrible effect on our stomachs, but with the injections the side effects have practically gone. MTX injections are so easy, you'll get used to them in no time. Take Folic Acid on the days your are not injecting. I get my MTX pens through Health at Home, delivered to our house. Be positive. Don't let RA get the upper hand. You can get back to a more or less normal life, believe me. At the worst time, I got disability allowance for six months. Good luck with the assessment if you have to go. All the very best and a big hug.

Carolsos profile image
Carolsos in reply to stbernhard

hi stbernhard thank you for replying, yes I do take folic acid every day except on mtx day, in fact I take 2 folic acid the day before and the day ofter mtx. but does not help, the sickness is just getting worse. my RA team are brilliant, i maybe ought to use them more often, in stead of trying to put up with things hoping they will get better. Thanks for the big hug and sending one back to you.

Karen77 profile image
Karen77 in reply to Carolsos

Hi Carol. So much of managing this disease takes time, and everything I read says you need to get things under control as fast as possible to ensure that permanent damage us not done. What I mean with that, is make surethat the waiting you are doing is your rheumy team's fault (ie having to wait for an appointment) and not yours (ie tolerating pain and misery for as long as possible then finally ringing up the dr when you're at your wits end and THEN having to wait 2 months for an appointment. Three years since my diagnosis, I am no less patient. God forbid I end up with gnarled hands because I didn't want to inconvenience anyone.

Gentle hugs to you!

Karen

Jacki08 profile image
Jacki08

Sorry to hear that you are feeling so poorly. This might seem an obvious question but has your gp given you any anti sickness tablets? If I forget to take mine I feel naseous on mthx pills x

Carolsos profile image
Carolsos

Hi Jacki I did ask for some anti sickness tablets from the nurse last week at the doctors but she said I don`t need them, but am going to have to go back and get them as I do need them. Just don`t understand why she did not give them to me?

Thank you for your reply.

Carol x

Jacki08 profile image
Jacki08 in reply to Carolsos

I started mthx and hydrox in Oct 2014 and was very sick the first week--- got the anti sickness tablets and took them twice daily for a month--- worked a treat. I only take them occasionally now-- when my methx is increased. Nausea is something you don't have to put up with chick x

Ashtree profile image
Ashtree

Hi Carol like you I was constantly feeling sick, stomach pains, sometimes really sick and washed out and tired due to mtx tablets. Changed to injections and I have now got my life back. I was diagnosed with RA last July. The first 3 months supplied by the hospital now I get them on monthly prescription from GP good luck

Susiej38 profile image
Susiej38

I have been using injectable MTX for a little over a year. When first diagnosed I told my Rheumatologist most Meds cause problems for me with my digestive system. She started me on the injectable MTX from the beginning. I have never had nausea or anything like that with it. I did have rapid heart pounding and felt lousy the day after injecting and usually stayed in bed . She then had me split dose so that I inject half one night and half the next night so that I have injected a total of 20 mg a week. It immediately took care of the rapid heart beat. I still believe my energy is not what it use to be, but I am able to work and go about my life. The main side effect I have from MTX is hair thinning and I hate it, but If I had a choice of being crippled and having hair or being able to have a life with little or no hair I would have to choose no hair. MTX took a long time to get full benefits(4-5 months), but it has given me a life. I also take Enbrel and have been on that in addition to the MTX for about 4 and a half months now. Good luck to you and I hope you have success with the injectable MTX.

nomoreheels profile image
nomoreheels

I've been far & away better on MTX injections Carol. Although I reacted well to tablets they made me nauseous & even an increase in folic acid didn't take the feeling away to an acceptable degree but I was so happy with how much I could do on MTX I was more than willing to try subcut. It only took one demo from the nurse & her watching me doing it myself the first time & I was away!! Do remember though we all react differently to meds & I still get more tired the day after & not particularly hungry but the better overall feeling is well worth one iffy day a week. You may find a big difference taking 5mg folic acid every day except MTX day as well, it made a big difference for me, that & changing to injections.

My Surgery has a shared care agreement with the Rheumy Dept I attend so my rescripts are done through my GP. You will need to see if your Surgery has signed a similar agreement as this will determine if you get yours from hospital or your GP I would think. Do you have a copy of the report your Rheumy sends to your GP? If so it should be in that letter whether or not your Rheumy has requested your Surgery prescribes them. If you have an internal pharmacy they will supply them otherwise you'll take your script to whichever chemist you choose, though I find it best to keep to one then they tend to know which meds you're on. With MTX being a specialist med not all GP's know which acute meds contraindicate with MTX, things like antibiotics or any other non RD med your GP prescribes as a one off.

It sounds as though you need to make your work aware just how RD affects you at the mo. It's early days for you & it's necessary for them to understand that it takes a little time to get your disease under control. There's every chance once you're showing improvement, even medically induced remission, you could be back to pretty much your normal self but do remember RD isn't always that simple. It's a chronic disease but much can depend on how well we are, apart from having RD I mean. If you catch a cold chances are it will last longer than normal because your immune system doesn't work as it once did. Overdo things & you risk flaring but these are all things you'll start to understand bit by bit, this goes for managing fatigue too. You'll learn to listen to what your body's telling you & avoid most things that cause it to have a go!

Hello,

Hope you start feeling better soon. So many people don't understand about RA and your boss seems to be one of these. One of the ways I've had to deal with things like this is to get as much info about RA as I possibly can, or bring info up on line and sit down with the person concerned and get them to go through it. So many others just assume that it's the same as osteoarthritis.

I also had a lot of problems with the methotrexate tablets and was given injections, which are great. Takes a bit of getting used to doing it, but it's so worthwhile with very few side effects. I now have the pen type of injections because the RA in my hands and wrists made taking the syringe cap off rather awkward and the pens are even better.

Don't worry, you'll be fine and will get used to it in no time.

Good Luck. x

p.s. I get a prescription from my RA Nurse Specialist and then take it to a chemist. Hope this helps. x

Carolsos profile image
Carolsos

Thank you all for your replies. I will take on board what everyone has said. This means a lot. Thank you. ❤️X

Beverley-NRAS profile image
Beverley-NRAS

Hi Carolsos,

you have had a lot of great replies here. As far as work is concerned, you are covered under the 2010 equality act. I have put links below to our publications on work both for the employee and employer. You can download them but if you would like hard copies please feel free to order them online or you can contact us at the helpline to order them:

nras.org.uk/publications/i-...

nras.org.uk/publications/wh...

If you would like to call us to talk about work and what can be done to help you the pleas feel free to d so. Our number is:

0800 298 7650 Monday - Friday 9.30am - 4.30pm

Hope you get things sorted,

Regards

Beverley (NRAS Helpline)

lush100 profile image
lush100

just been told that I will now be changing over to mtx injections, started on 10mg tablet once a week increased to 12mg, increased again to 17.5mg.

I'm not sure why as I was not sick or had any side effects, a new consultant i saw just said try the injections.

The crippling effects of RA is a disability. Damage to the body is but having a cold virus or feeling sickish from the medicine is not Some will argue and say that it's part of the disease just as being sick is for a cancer patient. It's a tough call. I think that I am right though according to all of the material that I read.

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