Since diagnosed in September I still feel so exhausted and pain varies day to day. Taking 20mg Methotrexate and Folic Acid. Will this ever improve. I'm new to group any any advice would be appreciated.
Hi fee sorry to hear the medication isnt working. i was just diagnosed in January, was put on 7.5 mg of steroids with Meth 20mg every Saturday along with Folic Acid. As soon as i took the steroids it made such a difference within two days. Have you been taken steroids? iv had little to no pain since, still a bit stiff in morning but nothing compared to what it was like. Also i take one Celebrex once a day, along with 2 Red Krill oil caps and 3 evening primrose oil caps. Dont know which is working or not working but i take them all and im nearly 100%. I only have the odd alcohol drink, cut out all fizzy drinks, eating green veg and making fruit smoothies. Hope some of this helps you
Hi fee
I too was diagnosed in September. I saw a Rheumatologist who put me on a very low dose of Leflunomide. It got rid of most of my awful foot pain, but little else. He then increased the med to 20mg but it still wasn't doing anything. I ended up with a new Rheumatologist and she immediately took me off of the Leflunomide and put me on Methotrexate starting at 10mg, increasing to 15mg which I'm on now.
My body feels worse than ever, except the feet are still better. But they're more painful now than when I was on the Leflunomide. She is getting me on a one year clinical trial with Enbrel in a couple of months and has assured me that is the end-all,be-all drug for me. I take 1mg of folic acid as well as a fish oil tab every day. I've heard a lot of great things about Tumeric supplements for inflammation and want to try that too.
The fatigue is ongoing and I am working a stressful job which doesn't help. I can't even think of working a 40 hour work week. It would completely wipe me out.
I'm so glad to have people to turn to who understand. I hope that this ongoing pain isn't forever for us. I asked my Rheumatologist if I'll ever feel normal again and she said yes, so I'm trying to remain hopeful. Welcome to the group!!
Thanks Claire. I'll try some of your tips. Anything just to feel normal again.
Thanks suelmc. I'm trying to remain hopeful but the fatigue is really dragging me down. I work 21 hours a week but even this is becoming difficult. I'll talk to my rheumatologist next appointment.
Best of luck, i know what it feels like!!
Hello fee, sorry you are suffering so much, but there is hope! i was diagnosed last december with RA and am taking 20mg of methatroxate and folic acid and although i feel worn out at times the pain has gone,, just the odd ache here and there, and no swelling of joints for a few months, i work full time as a gas main layer, so job is quite physical and most things feel twice as heavy as they should but i am managing to do my job just! i keep thinking i will wake up one day and BANG!! it will be back,, but till then i am making the most of it,, so there is hope,, and just like you where you probably feel like your in this all alone, my head was in a spin trying to come to terms with it all, but there are a few of us out there, and all willing to give advice and a bit of understanding of this nasty illness, so stick with it and if the medication is not working ask to try another, Take care Tony.
i am sorry i to feel like this but with meds i am sure it will get better but a lot of these take a while to work
Hi sue, this RA is awful n so many people have it now.you might feel bit better on higher dose methotrexate.best I've ever been was at 20mg but then consultant highered to 25mg n it effected my liver so was a taken off it. I have tried enbrel,humira+ rituximab + none have helped. Always assured that each one would be " the one". I have been on steroids since 2012 which help but I will never be able to work again. I was a cook .my main problems are hands,arms ,shoulders n feet.
Take time out for yourself n rest when you can. Hope embrel works for you
have you had a meeting with the occupational therapists? they really helped me work out what I could do to make work more managable for me. Part was equipment, part was strategies - shifting how I worked. All good stuff. And yes - I had a steroid shot the other week which has made me feel much less exhausted. I know its a tempoarary fix but I don't care - it works!
Hi Fee
google The Road Back Foundation I have been on this treatment 6yrs.
i feel so tired but i bake my own bread and one day not thinking i nibble everything put a tiny bit of yeast in my mouth swallowed it i had more energy than i knew what to do with carol
Hi Anthony and All, I have been active in the menopause forum and complaining about severe, sharp, debilitating joint pain and muscle aches, pulls and spasms. Well, I got blood tests back and have anti-CCP of 218 and CRP of 8.9. The CCO number is very high from what I have read, right? I really thought your answer to this post was sensitive and positive so I wanted to reach out. I am scared out of my wits. Also overweight with sky high blood sugar and cholestorol. I was never a bad eater--just too much and I have been on a good regime for a week (I WILL lose weight to help myself) but when I try to exercise, even walk, the pain is so bad, I literally can not do anything but lie down for hours after, taking fistfuls of Advil. It hurts to chop veggies. It hurts to flush the toilet or wash my hair. It hurts to drive and work/sit at a computer. I'm so scared. My dad had RA and other autoimmune diseases and died of liver failure due to long term steroid use. It was not a pretty way to go. I don't want my son to go through that with me. And the rheum can't see me until end of April. do you think I shoukd find one that can see me sooner? That CCP number scares me. Any words of encouragement or advice would be deeply appreciated! Thank you! Kim
"CCP" not "CCO" - don't know how to edit posts
Hi Kim...What was your your RF number? My CCP was at 250+, so I know how alarming it can be. My Rheumatoid Factor (RF) was at 40. See a Rheumatologist as soon as possible. You don't want to suffer from joint damage. It will take awhile to find what med works best for you, so the sooner you can see the specialist, the better. Good luck to you!
Hi Sue! Thank you! Actually my RF was negative! But I read up on all this and it can be negative in about 20-30% of RA cases and positive may not necessarily mean RA (can be positive when there is Lupus and other autoimmune disorders). From what I read, the CCP is 98% accurate, is only an RA indicator and a higher number indicates a more advanced disease state. Thank you again for responding to me! I faxed the Rheumy today with the lab results and asked for an earlier appointment and I called my referring GP to ask her to intervene (the "intake coordinator" said earlier appts may be possible with dr-on-dr phone call). In the meantime, I started fish oil, naproxin and am on a strict anti-inflamatory diet and actively losing weight. I don't have nodules yet and - oddly - my hands and wrists are not the worst bother... but my knees, ankles, feet and shoulders SCREAM in pain sometimes. Hugs, Kim
Hi. I know how you feel. I started on 12.5mg methotrexate and have increased to 20mg with very little benefit. I had a big flare up so had a steroid injection which sorted it out. The methotrexate is making me feel sick constantly at the moment so I'm drinking lots of ginger tea. I've been assured that if this doesn't work there are other options such as biological treatment but due to the cost (approx 10k per year) I have to have other things before I can go onto it. However I've been assured that things will improve and I'm trying to keep a positive attitude as I know things will get better eventually. My rheumy nurse is amazing and I can talk to her about anything which helps and I know she is doing what she can to speed up the process. Hope you feel better soon - even if the treatment isn't working just yet at least you have a diagnosis so you can be treated - it took me 6 months of persuasion to see a rheumatologist because I was young so I "shouldn't" have arthritis.
Hi h33919,
I started on 12.5 mg of MTX too and am now on 15mg with no relief. In fact, I feel worse on the MTX than I did on the Leflunomide. And the MTX, like you, is making me sick to my stomach constantly. I have to be on it for 3 months before they will consider me for a 1 year clinical trial for Enbrel. I'm assuming Enbrel must be a biologic? Anyway, I hope they don't keep me on the MTX with the Enbrel. I'm tired of feeling nauseous. But I've read on here where people are on both. I'm sorry you were told you couldn't have RA due to your age. It makes you wonder about the health care system when they make statements like that, since RA isn't really like 'arthritis' but an auto immune disease and can happen to anyone at just about any age. I'm so glad for the support of this group out here. I've learned more about RA and everything else from this forum than any of my doctors!
Hi am new to this forum I was diagnosed with RA back last may I am on 20mg methotrexate and frolic acid I have good days and bad days more so bad days would like to know how other folk are coping with the same thing thanks.
Hi, I'm now on my second week of 20mg and on Monday (the day I take the dose) I felt shaky and faint as if it is like withdrawal symptoms. Does anyone else have these? Work is very stressful and my hours are increasing which doesn't help with the symptoms as that is what seems to trigger my inflammation. I'm due to go up to 25mg but at 20mg I'm not feeling much benefit. But I'm trying to be positive and work hard to prove that I can cope.