popsmith1874

Very sorry t hear that and it's not very nice for yourself , I'm currently off it as well as I had ulcers in my throat and I was getting blurred vision but I think that was down to the hydrocloroqine I also take sulfazalasine as well but I've been off all meds for 3 weeks now and I'm starting to struggle now, I've managed to get an emergency appointment tomorow at my consultants clinic so will see how it goes. Give the helpline a ring they might be able to help

NanaFifi in reply to popsmith1874

Thanks, I'm new to the community so never even thought about ringing the help line. Sorry you're not doing so well yourself, good luck with your appointment tomorrow.

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lainee

Hi, oh bless you the things we have to suffer!! ,I don't get this but I do get stomach pains for a couple of days. I have 20mg injections, it could be worth asking if you can change to injections to see if this helps. One thing for sure though don't suffer from it for too long before seeking med advice.. I drink lots of water on mtx day and I believe peppermint tea is good for wind so it might be worth trying. You could also try taking it at nught. Take care xx

NanaFifi in reply to lainee

Thank you so much, I never even knew you could get injections! I've tolerated it pretty well up to now but will see if I can get an appointment with Rheumatologist and discuss that option. In the meantime I'll go back to 17.5mg until I can see him.

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lainee in reply to NanaFifi

Can you not speak to your rhuemy help line first for advice as decreasing any dosage without advice might not be the best thing to do , she might be able to help while you wait to see consultant xx

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NanaFifi in reply to lainee

I don't have access to a helpline? I will phone and ask to speak to my GP tomorrow. Have only been in increased dose for five weeks to see if it would help me get over this flare up. Both Lupus and RA are playing up just now.

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lainee in reply to NanaFifi

Oh sorry usually the rhumatology dept has a helpline where you can speak to rhuemy nurse, are you in the UK? Sorry to hear you are having a flare and have both lupus and ra that's a lot to cope with but I see you have had ra for a long time. You deserve a,medal xx

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NanaFifi in reply to lainee

I'm in a small town in the North East of Scotland. Having a help line where you can talk to a Rheumy nurse would be great.

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lainee in reply to NanaFifi

Yes it is useful, but it sounds like you have a good gp so hope it goes well for you xx

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NanaFifi in reply to lainee

I've just had a look at your recent posts, sounds like you've had a terrible time. Hope you are on the mend again. Xxx

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lainee in reply to NanaFifi

Yes I am thank you xx never a dull moment !!

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nomoreheels

Flatulence can be a side effect of MTX, is your tum bloated too? I take MTX but it's not something I suffer with except after lentils or a dish we have called bean bake, mainly consisting of red kidney beans & butter beans. Have you mentioned it to your Rheumy or GP? If you otherwise do well on MTX it might be helped by something to ease the bloating (if you are having any) or maybe a slight change in diet. I drink quite a lot of peppermint tea, that helps any bloating particularly after meals.

It may be related to the way you take it, tablets are notorious for causing gastro problems, possibly changing to injections would solve it. With injections the MTX goes straight into the bloodstream not through the tum so it would stand to reason many problems are resolved when injecting.

I don't know if increasing your folic acid would help but certainly worth asking. I take 5mg every day except MTX day & I'm better than on the day before & the day after I used to take.

I asked to come back down from 20mg to 17.5mg as what's a minor issue the day after increased to 4 days & became a problem. I'm needing to add another DMARD to compensate, perhaps this could be an option for you, either way you'd need to broach the subject with your Rheumy. The NRAS helpline may be of help, try ringing them, 0800 298 7650.

It must be really debilitating for you so do please talk to your Rheumy.

NanaFifi

Thank you so much, I was beginning to think I was going off my head!

I have been getting very bloated and also multiple bowel movements but only since the dosage increase.

I do tend to be prone to bloating/wind and am quite conscious about what I can eat.

I think the injection sounds like it would be good for me, I will definitely ask my a Rheumatologist about it.

nomoreheels in reply to NanaFifi

No, you're not imagining it! I meant to mention if you also have very uncomfortable trapped wind on occasion I've also had peppermint capsules because I am prone to having trapped wind in my shoulder. I got mine from Holland & Barrett, they sell 2 strengths but any health food stores should sell them. But I've found Windeze have been the most successful, they were recommended by the nurse after my last laparoscopy.

One more thing, it may or may not be relevant but don't bolt down your food, slow eating aids better digestion so it may help reduce the extreme nature if the flatulence you're experiencing!

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NanaFifi in reply to nomoreheels

Thanks for that, I don't get trapped wind often - the complete opposite at the moment!! but good to know about peppermint capsules. I always have peppermint tea in the house but I must admit to only drinking it when I really need to as I don't particularly like the taste. I used to use New Era Tissue Salts but they have been taken off the market because there was no "evidence" to prove that they did what they claimed.

Hope you're having a good day. x

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nomoreheels in reply to NanaFifi

I have some licorice & peppermint tea which is predominantly licorice flavour but maybe not for you just at the mo! If it's specifically peppermint you're not keen on I've had spearmint tea in the past which I find particularly refreshing in the summer though where I used to get it don't sell it any more & can now only find it mixed with other mints. I don't do homeopathy (except for arnica gel which my GP poo poo's!) but if they worked for you tissue salts are still available to buy online (Amazon & health shops).

Looking forward to watching Happy Valley though it's the last one tonight, I do hope it comes back. Sometimes you're disappointed when there's another series of something that was good first time round (Broadchurch was one) but I've loved this one. Hope you have a good evening.

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VivianRose

You should speak to the dr. I had other side affects when they increased it and she told me to knock it down one pill. I take folic acid every day and 6 pills once a week. Feel better 💩👍

NanaFifi in reply to VivianRose

Thank you, I only took 17.5mg yesterday and will see what happens later today. Cant believe so many people take folic acid more than once a week.

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Sunnyspells

Hi, I have just been through this myself. Started an MTX before Christmas and increased very gradually as I often have adverse reactions to meds. Was fine till I reached 12.5mg when the wind and frequent bowel movements and a general feeling of nausea began. I have IBS and diverticulisis, so this was causing me even more problems. My nurse has increased my folic acid to half a tablet 6 days a week,and this seems to have helped, but she wants me to have the injections instead to cure the problem, so I am waiting for my prescription of syringes before she shows me how to use them. Hope you get offered the same support, and that it works for you. It's not funny being afraid to leave the house unless you know there is a loo nearby!

NanaFifi in reply to Sunnyspells

Thanks for sharing and sorry you've had so much hassle with the drug as well. Someone else suggested I ask about the injections and I think that would definitely be the way forward for me. Good luck and keep well!

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Mall

Hiya, I take 25 mgs weekly in tablet form and yes had similar problems to you. I take it Thursday evening after my main meal and have loose bowel movements Saturday. This has improved the longer I have taken it. The really smelly farts are embarrassing but I find that this depends on what I have eaten, if I am careful about my veg these aren't so bad. I do take folic acid every day apart from metho day. This does help with side effects.

NanaFifi in reply to Mall

Your timescale sounds the same as mine, I take it Monday morning after breakfast and everything kicks off late Tuesday afternoon and doesn't settle till Friday. How do you explain to people why you keep having to run to the loo every five minutes? "Oh excuse me but I must go and pass wind!"

Its so bad that my husband won't even sleep in the same room with me and I absolutely don't blame him!

Thanks for taking the time to talk to me.

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bosun65

It appears that flatulence is fairly common.

See this link; ehealthme.com/ds/methotrexa...

I am on 25mg mtx and suffer very little.

I hope this link can help you

NanaFifi in reply to bosun65

Thank you.

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Crusee

Hi.

I am new to this site and have just seen your comments re flatulence.someone has suggested the injections as an alternative.I have been using the injections for nearly 2 years along with sulfasalazine a fad hydroxychloroquine sulphate.The sulfasalazine made my hair drop out and the injections have a whole set of side effects all of their own.This is a very powerful drug as I am sure you are well aware.I take folic acid tablets every day except Thursday which is my injection day.On a Saturday I am totally out of action.I feel in a lot of pain and sick and generally I'll.My rheumatologist thought I was making it up but after speaking to other patients at the hydrotherapy pool I attend were experiencing the same symptoms.My own GP explained that it may be that the drug is at its height of toxicity at 48 hours and this may account for my symptoms.I have also googled guidon the Internet and it seems a lot of other folks report the same.In November 2015 I was admitted to hospital as an emergency case,my renal function had suddenly plunged to 14%.The doctors had decided that the methotrexate jabs were actually poisoning me and were responsible for the sudden decrease in my renal function.Needless to say I have had all my RA meds stopped until such time that my renal function improves and I am really struggling at the moment.I am seeing my rheumatologist tomorrow who will decide which meds I can now take going forward.I am really hoping he doesn't suggest going back on the jabs again as I felt so ill all of the time and I don't want to go back there.I am sure not everyone has the same problems but just wanted to make you aware of mine.I hope you find a solution to your flatulence problem as I am sure this must have a huge impact on your life.

NanaFifi

Hi there and thanks for sharing. Sounds like there are a whole lot of possible problems with the injections as well then? Quite a common thread is that it seems we all have side effects around 30 - 48 hours after we take our weekly dose. I'm interested in finding out why I only have 5mg folic acid once a week and everyone else has multiple doses.

Really scary that your renal function dropped to 14%, what sort of dose were you taking. I also take hydroxychloroquine and have done for about 30 years with no side effects, also prednisolone for over 30 years with very little side effects - moon face and weight gain on higher doses which always went away once the dosage was decreased.

How on earth are you managing to cope without any RA drugs? I really hope you get sorted out soon and remember that you can always say no - no point in feeling ill all the time when there are bound to be other options. One of the GPs at my local Practice asked if I had ever been offered Biologic drugs as he had heard they were very effective in treating RA?

Good luck and let me know how you get on.

Crusee in reply to NanaFifi

I was only taking 15mg of methotrexate at the time and the effects were horrible.I am really struggling at the moment,however my GP put me on a low dose of prednisolone about 1 month ago to help in the meantime.I don't feel so tired but I now have a face like a hamster -really puffy and feel hungry all the time.Clothes are getting tighter and my mobility is very limited so weight s becoming an issue.With regards my future meds I am a doctors nightmare.I have chronic renal failure stage 3'I am a diabetic and I have lymphodema so not all meds are suitable for me as they just put one of my other conditions out of kilter.Sometimes I wish I could find a magic wand and make it all go away.This is not what I had planned for my retirement.!

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NanaFifi in reply to Crusee

Oh that's so awful for you, I hope they manage to find something that helps you soon.

Sending you a gentle hug. X

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Crusee in reply to NanaFifi

Thank you - gentle hug has arrived and is gratefully received !

Xx

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VeggieSteve

Uh, Nana? I have a news flash: I inject myself at 0900 and by 2000 or 2100 my wife can’t STAND being in the same room. And it doesn’t help that we’re vegan, so we eat beans and fiber like it’s our job. We just kinda laugh it off and turn the fans up. I haven’t been able to talk with my rheumatologist about it. Don’t want to (to coin a phrase) raise a stink. 🤣

NanaFifi in reply to VeggieSteve

😂🤣 Since I came off taking Mtx orally I’m happy to report that I’m much more pleasant be around!! 😄

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VeggieSteve

LMAO!!!

I bet you're pleasant, anyway!