sickness

[dawni69]

i was reading on here i also feel sick only have to think about taking the injection and i feel sick wen i take it i have to suck on a mint ive just missed 2 doses due to problem with prescription i take frolic acid 5 days a week and im in a lot of pain still but i read about the symtoms and they sound like fibromyalgia i am confused

[Matilda_1922]

Hi dawni69

This happens with me too. I feel nauseas before I have methotrexate and it continues for a day or 2.

I usually drink plenty of water and go to bed straight away to try and sleep off the nausea

[BenRees21]

Yes, Methotrexate is one horrible drug! I only used to have think about it and I’d feel sick! Then it used to make me feel sick for a few days. For me I had to get an anti sickness from my GP because I couldn’t handle it. I’m off it now and waiting for my appointment on the 9th to see what I get put on next! I can guarantee it will be something else that makes me feel sick! Mints are good though, I used to live on them until I got the anti sickness tablets.

[AgedCrone in reply to BenRees21]

Methotrexate is a miracle drug for lots of us on here who take it for many years....I took it for seven years & it really was a life saver....I had no nausea at all,so it does help some without nasty side effects.

Ii is still regarded as the Gold Standard of treatment ....even though it doesn't suit some people....

But don't despair & please don't dwell on the fact that any drug you are prescribed will "guarantee" to make you feel sick....there are many Dmards that don't cause nausea....but if you have it fixed in your head that you will feel sick....then you probably will.

Hope your appointment on 9th provides something that will help,

[BenRees21 in reply to AgedCrone]

If that’s regarded as gold standard then they have pretty low standards...

I’m not saying it ain’t great when it works but it comes with side effects that affect most people. If I’m prescribed another DMARD then nausea is a side effect of them all, I will suffer with it as my stomach is very sensitive.

✌🏻

[AgedCrone in reply to BenRees21]

Try telling that to those with RA who Mtx restored their life to almost normal....notice almost normal ....I don't think we ever get back to Pre RA days.

Mtx has been around for a really long time & rheumatologists would not continue prescribing it if it didn't have such a high success rate.

I agree it does have a reputation, but I think a lot of that is because it was originally used as a cancer drug & that starts alarm bells ringing, but the max dose we usually have with RA is 25mg per week...cancer patients could have that X 100!

If you do have a sensitive stomach why not ask your rheumy for some sort of protective meds to alleviate the reaction you have had tin the past?

But don't despair.... There is light at the end if the tunnel, & if you can possibly stop stressing about how bad any meds will make you feel, it really will help.

[BenRees21 in reply to AgedCrone]

I ain’t stressed at all, I will deal with it like I always do. I’m incredibly happy that Methotrexate works for some people and has helped them live a more normal life! All I was saying was that gold standard to me is brand new drugs that have little to no side effects and are very effective for at least 99% of RA patients. Current RA treatment is stuck in the Stone Age, no innovation happening at all. Rheumy are quite happy getting you to try this drug and that drug until something seems to work and most of the time it’s pure guesswork! IMO we are far off a gold standard of treatment. I think you do a disservice when you say Methotrexate is “gold standard”, far from it...we should be aiming for a whole lot more then that and not just putting up with what’s already in place. ✌🏻

[Kai-- in reply to BenRees21]

.

Bit more (supplemental) info on MTX ( healthunlocked.com/nras/pos... ) & other DMARDs ( healthunlocked.com/cure-art... ) if interested, BenRees21. 😌 🙏 [Get a kick out 😆 of your image (name icon) each time I see it — it brings a smile. 😊👍 ]

.

[BenRees21 in reply to Kai--]

Thanks! 😊

[Hidden]

Same as you, Matilda and Ben, hide metoject away until i take them: makes me retch just thinking of them: nauseous day i inject and 2 days after, tho lately started having random waves in week. They ve lowered dose down and will have something else added next appt., which will probably have side effects too! Joints helped but not cured, sorry not to be more positive and commiserations.

[Kathies]

I persevered for 7 years but eventually the nausea outweighed the benefit so I was put on leflunomide , I have lasted 10 months. After losing weight and hair and getting more grumpy every day, at my appt last Friday my lovely consultant is putting me on a biologic. Another injection once a week, but I am positive this will work. Talk to your rheumy nurse and see if you can push your next appt forward, it is miserable having that sickness feeling, especially if you are still having pain, so something isn't working. Good luck, and I know it's a typo, but I just love the image of taking frolic acid, it made me chuckle, maybe we should start rebranding this stuff we take, gotta find the laughs where we can x

[Hessie5 in reply to Kathies]

All the best with your biologic- which one are you going to be on? Hessie

[Kathies in reply to Hessie5]

Hi Hessie

It's etanercept, I had the blood tests today (raised blood pressure due to waiting over 2 hrs thereby paying £5 parking charge, grrrrr) other than my usual grumpy old womanness, I am looking forward to this next stage, I hope my expectations come true. Are you on one, or playing the waiting game? Kathy

[AgedCrone in reply to Kathies]

Me too.....7 good years on Mtx.....I must have an iron gut as no nausea!

I was moved on Leflunomide which I agree about .....I had no bad reaction except it stole my appetite & I lost 12,kilos in 4 months.

My rheumy stopped that too, & I have been on the Biologic Retuximab very successfully since 2016.

Sadly I only got Folic acid.....maybe if I'd tried the Frolic I would have fared better?

[Kathies in reply to AgedCrone]

Hi AgedCrone, love that name, how have you found the Biologic? I've waited 10 years since first diagnosis and it has been a bit of a slog, so fingers crossed I can look forward again. Kathy

[AgedCrone in reply to Kathies]

I'd been waiting 17 years before I started on RTX......trial& error is the name if this horrid game. You find a Dmard & it seems to work, then it all goes pear shaped.

I like the fact that on RTX you only have two infusions every 6 months..so you can sort of forget you have RA if it suits you.

Although I'm two months away from my next infusion & my ankles are really playing up....went to the next village which I usually walk to& from with no probs & had to get a taxi back. But I have been very stressed over the water leak at my house & having to move out until two days before I came away.....so I'm telling myself once I calm down things will get better.

But the sun is shining &. I can sit & stare out to sea.....so what's not to like?

[Kathies in reply to AgedCrone]

Sounds good, apart from the water leak. I'm going on to Etanercept, blood tests being OK, which is another once a week injection, I was hoping for the infusions, so looks like I'm still some time away from assuming this works well for me. At least there are drugs to move on to now. My mum was horribly affected by RA and nothing other than cortizone, gold injections and endless operations, so I always feel optimistic now. Looking forward to warmer weather and loads of sunshine, that also helps.

[AgedCrone in reply to Kathies]

I would be devastated if I had to have weekly injections.....unless they are self administered?

I go away quite a bit & having to be around & have to go to a nurse or a hospital would be a complete No No for me!

When you have seen what your Mum went through at least things have improved a lot. If only RD was recognised like cancer is.

I've had breast cancer, & it honestly was a walk in the park after the pain of RA. Of course I was lucky & it was 10+ years ago & no probs now....but even back then the RA was more trouble than the cancer.

[pm52]

Hi there, I am using 15mg metoject. I also suffered nausea when on the tablets but once moved over to metoject it improved. I always inject after a meal and find that the nausea which usually appears the following day subsides if I eat something, slice of toast, ginger biscuit (ginger helps a lot) you could try a little piece of stem ginger. bit like travel sickness. I know some people suffer much more than others, we are all different. I also take folic acid every day except mtx day and I am told that makes a big difference. Good luck.

[Carolsos]

I am on self injection on mtx and I want to come off them and go back onto tablets even though they made me very sick. I think I have a phobia with the injections. Does anyone know how to go about changing over to tablets? When I take the injection am nearly sick and feel terrible, my injection point burns and I have put off taking it for a few weeks because of the fear.

Carol x

[Hidden in reply to Carolsos]

I guess you could just ring helpline/ask rheumatology Carol. I would like to do same as some people on here split dose same day and it seems to ease nausea. I am not squeamish about needles, but just injected tonight & instant nausea; Not imagining it or stressed just fed up with it. Good luck with yours.

[Carolsos]

Thanks for your reply. I am normally ok with needles but just something about the injection.

[Hidden]

Same here, came off tablets due to nausea too lol, gone full circle now 😊