I am sorry to whine, but my body is not doing well. ... - NRAS

NRAS

36,358 members45,025 posts

I am sorry to whine, but my body is not doing well. My legs and feet hurt. My arms, elbows, hands are really aching. And I am exhausted.

shareasmile profile image
11 Replies

I have taken mtx and plaquenil since October,2013. At what point does the doctor decide these aren't working and give me something else? I was taking an nsaid also, but I retained water and also heard that mtx and nsaids don't mix well, so I stopped. Is this a flare up or just the nature of RA? Help!

Written by
shareasmile profile image
shareasmile
To view profiles and participate in discussions please or .
Read more about...
11 Replies

No need to apologise for what you perceive is whining....most of us have been where you are now so you are free to say what you feel

October is only very recent in terms of RA and it can take weeks and months to get the right combination of drugs that proves effective against the disease and is as varied as we are individuals.

As far as I am aware DMARDS, which MTX is and NSAIDs are compatable. MTX is the drug which will hopefully stop any further damage being done to your joints acting totally differently from the NSAIDs which are anti inflammatory pain killers. So what have you stopped? Check out the NRAS website. nras.org.uk regarding general information regarding these drugs which will help your understanding how they work, or even better call them direct team if you want to get some information and support on 0800 298 7650

All of your symptoms are consistent with what I have experienced as RA and at this point your RA is still not under control

You can also speak with your GP and see if there is another pain killer that can be prescribed that will work better whilst you continue on with the MTX

Everything is so new for you just now and there is a lot to take in. Do not stop taking your prescribed drugs unless you have spoken with your rheum. Team and welcome to this forum. There is much advice and support to be found here

helixhelix profile image
helixhelix

It's not whining, just very normal response to a rubbish disease! And sadly what you describe is pretty much what I had before the disease got controlled. As sal says, talk to your GP about other NSAIDS you could try as they will help to calm down the inflammation while the longer term drugs try to do their stuff. And talk to your rheumy dept about whether they would give you a steroid jab to tide you over as these can also help hugely. But generally the rheumy's view that you have to have tried a drug for at least 6 months on full dose before they will consider that it has failed you.

julie_warwick profile image
julie_warwick

just to say I know how you feel , I am pretty much at the same point and so fed up with feeling like this , it's miserable and difficult to come to terms with everything , guess we just have to be patient but we just want our lives back don't we ? let us know how you get on x

angel-delight profile image
angel-delight

Hello, I do my share of whining too. I am on anti-tnf injections that I feel are not working as much as I feel they should. Everyone I speak with are feeling the same, totally fed up and said they have felt this way since the cold damp weather. I am sure it must have something to do with how we are feeling with RA. Take care, I hope you feel better soon.

Hello

Why say sorry, we all are in the same boat on this site.

Sometimes as in my case it took a long time before they managed to get my medications sorted. With regards to MTX and associated DAMARD s I have proven to have a body that cannot take this type of medication. As a last chance they have introduced MTX injections (METAJET).

Many of this medications can take four or five weeks to make inroads into suppressing symptoms.

All I can suggest is that if not happy have words with your RA Nurse or Specialist when you next see them, or if you feel that there is some urgency and need to approach now have words with the RA nurse, If needing advice even have words with your GP, although he will kneel towards the RA nurse.

MTX and NSID generally are not a problem together, although tummy trouble can be a contraindication. One medication will mask the other and it is the DMARD that is generally the culprit.

Medications sometimes need to be looked into and we need to make informed decisions, multiple DMARD may need to be taken with the introduction of Biologics medications

BOB .

allanah profile image
allanah

Hi, moan away and as much as you like! It does take a little while for the drugs to kick in . However when you get your next check up do tell them how you feel, they might recheck your blood tests and examine you and then they would make decisions with you to persevere or change drugs. I hope though the meds kick in very soon. If it gets too unbearable do call the Rheumy helpline for more advice. Sending gentle hugs Ax

Susiej38 profile image
Susiej38

I am in the exact same situation as you. I am in complete misery with joint pain in ankles, wrists, knees. Diagnosed in Oct. 2013. I tried MTH went off now back on it. I am doing injections, 20 mg. A week. I am also presently taking Pred 10 mg a day along with Tylenol. I am in the US so healthcare here is a little different. Last night was the 8th week of MTH injections. My dr has even given the ok for me to do 10mg one evening and 10mg the next. This will be the second week I have tried doing this. And itseems to have helped with side effects. I am determined to give the MTH at least 4 months. My advice is don't give up! You might try the injections/ the digestive problems won't be as severe. I am waiting to get cleared on some tests and then will start biologics. The standard here in US seems to be MTH, NSAID, and a biologic. I was put on Pred because I had such a severe onset of RA after knee surgery. I hope we both get some relief soon! The first time I tried MTH I only stayed on it 5 weeks and switched to Lufllunomide- could not tolerate that drug at all.

Karen77 profile image
Karen77

I had to quick wean my infant to get on MTX in January 2012, thinking it would at least mean being able to play with my infant and toddler, but instead was in absolute misery, each day feeling like the worst day ever, gradually increasing the MTX to 10 tabs (the max) until September when I started Humira and it seemed like a miracle. I took 3 months of work off to deal with my misery - saw a psychologist, did some research into inflammation & just slept as much as I needed to (kiddos in day care). Do what you need to in order to get through this period. It sucks. One thing you can do to help yourself is to take loads of fish oil, anti-inflammatories like turmeric (in pill form or shake it onto your meals), ginger and garlic (hey, it can't hurt) and cut out the sugar (or at least as much as possible). I basically self-medicated during that period with chocolate, but I don't think I was doing myself any favours. Good luck! Once things got under control, things were really great for over a year (like I'd never had RA and was in the best shape of my life), but I my RA is now "active" again, it's a bum ride.

basketcase54 profile image
basketcase54

iam in same boat as you at the moment im in so much pain im fed up of waking u p in a morning i have no part of my body that doesnt hurt even my head i cant brush my hair ive done nothing but cry now all week i havent been to my docs since b4 xmas when they said i now had asthma i live on my own and have seen no one for days i havent the energy or strengh to get dressed but why get dressed nothing to get dressed for sorry i suppose im going on a bit angie xx

hatshepsut profile image
hatshepsut in reply to basketcase54

Hi shareasmile and basketcase54, don't despair. It really is worth persevering, and if you are feeling so depressed, please do get help! Speak to your GP and tell them how you are feeling. I'm on antidepressants as are many people with RA. Talking therapies can also help. You're not alone. Hope you get some relief soon. M x

Daisie4654 profile image
Daisie4654

It's ok to whine,cry,whatever. I feel the same way but opted out on all those cancer drugs. I had vasculitis 25 years ago and have it back a second time. I was told the last time to get on a good vitamin and did so but looked furture into it and found amino acids can heal the muscles, joints and cells that we need to cure vasculitis. Please look into amino acids. 1000 mg of Vitamin C heals your body, 800 mg of Vitamin E keeps your vessels from leaking. Good luck on your quest. For your RA get off the Vitamin D because it causes stiffness. just a multivitiman will do. Don't over do the vitamin D. Lots of water helps the joints and don't lay around in bed. Get up and work at moving those joints. Do as much as you can in a day. It will get better!!!!!!! Now chin up.

You may also like...

I am new to this site and RA. For years I have suffered phases of extreme pain in my feet, hands and elbows.

My blood tests showed nothing, but I saw a locum doctor who said there is research that not...

No inflammation showing on my ultrasound so why do I have constant pain in my feet and hands?

his words my hand and wrist is 'normal'. Ive taken methotrexate 15mgs for 8 months and...

Has anyone tried using diet to put their RA into remission? Any success?

was put immediately on 15 mg Meloxicam (NSAID). I started MTX at the end of that month (10 mg). My...

Successful hospital followup

questions (palindromic or ra and can I take nsaids along with mtx when my pain increases etc). She...

beginning to feel a bit scared

been on NSAIDS, Sulphasaluzide, MTX, MTX and Embrel, MTX and Abatacept and nothing so far has...