I am taking methotrexate for my RA the quality of my life is almost 0. Is anyone taking a medication that doesn't make them so sick abby

[Jill60]

Hi Abby

Sorry to read that your so unwell....MTX affects us all differently.....some people feel very sick, some lose hair.....MTX attacks my teeth, well I think it does, lost so many teeth since being on it......

You mention that your quality of life is zero, that is rotten, can you explain more how RAis affecting you...?

I suffer chronically with RA, I'm B12 deficient, Anemic,low Iron stores, etc.....compared to how I use to be, mine is out of ten( 1 being the worst......my physical health is around a 3........how it affects me is prob 3 also, maybe two........I have family around me, so that brings me up a bit.....but i do struggle with everyday life......

How long have you been in the forum ? It's a great place

[Kittykatxxxxx]

hello! How much folic acid are you on and how long have you been on it. Some of the side effects can be managed with more folic acid ( mouth sores+ nausea) or injections ( can also help side effects). If you have a quality of life of 0 sounds like you need to be on something else. Have you chatted to your rheumatology nurse about this or your rheum/gp?Hope you get sorted soon X p.s what dose are you on?

[Hidden in reply to Kittykatxxxxx]

I'm taking 13 1/2 mg of that methotrexate and 1 mg of full look acid. I don't have the nausea as much as bloating and other intestinal problems, the mouth sores not I know it's from the medicine and not from something else

[Hidden in reply to Kittykatxxxxx]

I called Walgreens they said I could take another half a milligram of folic acid at least until I can talk to my doctor

[allanah]

To me it sounds like either you haven't been on the medication long enough, it can take up to three months to feel better. Or the meds you have aren't working so well. I went back and called my Rheumy helpline and I got to see the docs quickly and they changed me from mtx t o sulphasalasine , I think give them a ring and see what they say xx

[Hidden in reply to allanah]

Actually my pain level is probably a one and a half. It's all the side effects of the medication I'm having a hard time dealing with. I know if I go off of it the pain will come back. I did try the medicine with the Sulfur and it but I'm allergic to it however that seem to work pretty good without the side effects like I have now

[Hidden in reply to allanah]

How do I find out about the help line?

[Dotty7 in reply to Hidden]

Have a look through any information leaflets that your rheumatologist may have given you, because there may be a phone number in there. If not, go online and look up your hospital trust, look up the rheumatology department and see if there's information about helpline numbers in there. If you don't get any joy doing that, ring the hospital switchboard during office hours and ask to speak to your rheumatologist's secretary. S/he (almost certain to be she ) ought to be able to point you in the right direction.

Good luck - it's miserable when it takes so long to work, especially as we are part of the antibiotic generation who expect meds to work in 24-48 hours.

Let us know how you're getting on.

Dotty xx

[allanah in reply to Hidden]

It's at top right , contact us on the mIn. NRAS page Nras . Co. I think is the web page xx

[allanah in reply to allanah]

The hospital one just ring the hospital switchboard and ask for the secretary to ..,, or ask for the rheumatology nurses helpline. '

[Hidden in reply to allanah]

Thank you! I will try that

[Hidden]

Thank you all so much! I just started this form last night. I take the injections of methotrexate. I do have mouse sores I bought bubblegum children's toothpaste which helps. I take a milligram of folic acid. 400 hydroxycloroquine

And my prednisone various it's either 10 or 15 mg. I've been on the injections only about two months I don't know if I'm not giving enough time or this is just The way it's going to be.

I i'm pretty much alone where I live I take care of my parents and I have not been able to work much. Kind of funny I'm a massage therapist and for sure can't do that right now

I feel good today. However Saturday is right around the corner

[allanah]

Ok, it generally takes about 3 month for the medication to work well but I would have thought the side effects should have eased a bit by now.

So I would ring the helpline tomorrow and tell them about feeling ill on the mtx and it's taking out of you helping at home, therefore impacting on the whole family!?

They maybe , as they did for me) increase the folic acid as that can help the sickness, or give you an antiemetic, a drug that helps with sickness?

I think they probably want you to give the meds a good three month trial but then u could maybe tell them you are not settled on it, my rheumys response was, well u have to take this for life, I want you to feel happy on it! He's an understanding bloke, even though I wasn't keen on him at first lol.

I also get steroid injections 120 mg I believe that work like magic within a few dats and for about six weeks but if your pain is settling then maybe that's not for you. The mouth ulcers tend to pass too, my doc says cos the drugs lower ur immune system u get bit of ulcers and stuff at the beginning but mine settled in my case.

I think drinking water generally helps with bloating but obviously mention it when u talk to the docs.

I hope you improve quickly, it's a bit hard at the beginning but there's light at the end of the tunnell! Thinking of you xx

[Hidden in reply to allanah]

Thank you! I do drink a lot of water at least nine bottles during the day and then in the middle the night. Gosh it seems like so much medicine to on. This is all new to me.

[allanah in reply to Hidden]

You will feel like an plc hand in a few months , if u go on the main NRAS page there's tons of info including a section on being newly diagnosed xx

[Hidden in reply to allanah]

What does Plc mean? I will look for that website. I believe I have had this for many years but just not as bad

[allanah in reply to Hidden]

Abby lol another sore hands typo! Should have been old hand ! Rubbish aren't I but I would recommend going through the main Nras

Site if u haven't already xxx and do chat on the Nras helpline, they really really helped me. ! Have a good rest now xx

[Hidden in reply to allanah]

Thanks for the laugh! I guess we all have finger issues lol

[joyous1965]

hi this quirky thing helps alot of us with ra im on mtx inj as well and enbrel and pred and celebrex, ive been on the inj since 2008 after shoulder surgery . ive had ra 18 years now .. but this really helps alot of us give it a try .. pineapple juice on ra day its helped my friends and me ... also a tab called biotain helps with hair loss , on my mtx day i do at night now b4 bed cos i get dicky tum and bad head with it brain fog as well like been hungover ... im on 25 mg of it hope this helps you x

[Hidden in reply to joyous1965]

Well I will drink the pineapple juice and take the biotain haven't lost much hair, at least not yet. Are you able to work at & and do some fun things I like like hiking or writing a bicycle?

[joyous1965 in reply to Hidden]

hi im off sick since feb i had surgery on my left shoulder i had calicficated tendonitis in it im not signed off yet from that that was keyhole , then in june i had double ankle fusion stiill healing from that wouldn heal im just now allowed to walk on it , so my life if very limited at the mo , i went out on weds im on crutches still omg carpel tunnel kicked in numb fingers pain its killing me now , ive never hiked in my life i do have exerercise bike not able to use yet as my bone hasn fused yet , it has 3 screws in it , give it a whirl the pineapple juice it does help x

[Hidden in reply to joyous1965]

I did get the pineapple juice last night. I had a next fusion a few years ago and two left shoulder surgeries were frozen shoulder and rotator cuff I guess maybe that was from the RA but wasn't diagnosed as yet. I can remember back 20 years when my hands are swollen The doctors just blew it off as nothing. You are going through so much I just can't imagine do you have insurance that helps you? I don't have insurance and I'm not getting the care that I need. My rheumatologist has never even given me a pain pill or a muscle relaxer so I have to go to the emergency room when I'm Real bad.

[joyous1965 in reply to Hidden]

hi im uk i dont need the insurance thing i had roatar cuff surgery in 2007 i now need full shoulder replaced that was my right shoulder , i had left foot arthroplasty in 2011 had all the bones took out and had metarsal shaved and relaligned . im on lots of med have always been on them from the go took me along time to get right ones thou lol ive been stuck in doores for 4 months now grr lol x

[Hidden in reply to joyous1965]

That's great that you get the medical attention that you need with out health insurance! I have no insurance here in the United States and I have to say I know my care is lacking very much I don't know how I will make it until I can get insurance and see better doctors I am so happy for you not that you have so many problems but that you can see doctors and get treatment

[claireyj]

Hi Abby sorry to hear you are suffering with nausea at the moment its horrid especially when trying to come to terms with RA ...I take 5mg folic acid daily apart from Methx day and apart from first couple of doses of Methx I've been ok re nausea ..have a chat with your rhumi team about folic acid ..... Thinking of u xx

[Trulyfedup]

Hi Abby, so sorry to hear of all your troubles...it can be very scary at the beginning ...give yourself a little more time for the meds to work...I'm on MTX and take folic acid everyday apart from injection day...are you having enough? I still have days where I vomit and days when pain is so bad I'm crying, days where I'm so fed up I'm crying but you know someone on this site reminded me of things that used to make me smile....one of mine is birdsong..it's takes my breath away...we all find things that help in a small way then hopefully that grows. I know it's absolutely awful and I do feel for you but this site is wonderful..the help I have received and the support!!! Also there is a lot of humour and a couple of them are hysterically bonkers!!!!!! So do stay on and get to know them, they will def help you (and sometimes makes you laugh)". It has changed my days joining this site. I wish you respite very soon. Maryx

[Hidden in reply to Trulyfedup]

Hi! How long have you had RA? What meds are you taking other than that methotrexate? Are you taking the pills for the injection?

[Trulyfedup in reply to Hidden]

Hi, I was diagnosed 8 years ago but I think I had it longer but as I road horses all my life and had fallen off a great deal breaking many bones, I put the pain down to that and getting older! I'm 58 . I was on MTX injection :25mg weekly, then, infusion of infliximub every 8 weeks. I'm also on Levothyroxin 75mg daily...omeprazole 20mg daily, I've got a Barrett's and a hiatus hernia. I've also got another big health issue. Intake 5mg folic acid each day apart from day of injection...I take Stemetil daily for sickness. I was put back on a smaller dose of MTX yesterday...15mg injection for two weeks, then 17.5 for two weeks then up to 20mg for the time being...I have to have another camera down I to tummy before they will put me back o. Infliximub. I have always experienced days of feeling really lousy and vomiting but I have had good days too.. I think it is important to pace yourself now..if you feel really tired don't push yourself but on a good day do things that you have missed out on...I have a wonderful family, six grandchildren and another little girl (going to be called Ruby) coming at Christmas time, so I am very lucky but I have changed as a person but am getting used to this new one!!!! .....sort of..

When it is all so new to you mentally and physically you will go through changes..give it time honey..you will level out and find out what you can do. If you feel down come onto this site..it has really helped me and everyone knows exactly what you are going through. Don't sit there on your own come and talk to someone on site. I really wish you well and just hang on in there...your clinical nurse is always there to help you too. Maryx

[joyous1965 in reply to Hidden]

ive had ra since age of 30 im now 48 . im on mtx 25 mg inj , enbrel inj , pred , celebrex , lanzoprozle of my tum , high chol , and citerzine for allergies xplus pain killers x

[Hidden in reply to joyous1965]

Are you able to function, work? Do you have health insurance? Do you have people to help you?

[harryhunt]

Sounds like you might qualify for the latest biological Tocilizumab. Ask your rheumy about the TOCILIZUMAB TAPER trials which are ongoing. In this trial Methotrexate is tapered in one group as part of building clinical evidence for TOCs effectiveness without it. I was on MTX and HCQ but they started losing effect so I was put on Toc which works differently from anti tnf's as it blocks a protein called IL-6. I went into remission after my first monthly infusion with DAS score less than 1 and CRP and ESR 1 and 2 respectively. Amazing. Never had that even after steroids. This is a very exciting new biological for those who cannot handle methotrexate. The trade name is RoActemra and there will be a sub cutaneous injection option soon

[Trulyfedup in reply to harryhunt]

Him this is very helpful information...I'm so pleased you are still doing well...good news maryx

[Hidden]

That sounds like a lot of great information. Also I knew language ha ha thank you very much for the information I will find out about it.

[Hidden]

I'm thinking if you live in the United States and you don't have health insurance you're not going to get the care that you need. Without that your quality-of-life can't be very good maybe that Obama healthcare will come drill and I can see some decent doctors otherwise I'm not sure I want to be here