Feeling down

Been off Methotroxate for a few months. My symptoms for RA getting worse. The usual, hands, feet, knees. Legs aching, arms aching.

Feel like crying on a morning. Have told them I am finding everyday like hard and need some new medication. They upped my Sulfalsalazine but nothing else. I have an appt next month at the hospital and apparently have to wait until then. Why won't they listen when I explain how I am feeling. I know they have hundreds of patients but the pain and tiredness is getting to me. I need something now but they don't seem particularly interested. Moan over. Guess I will just have to get on with it until then!

19 Replies

  • If your that bad go to see an emergenancy dr over the weekend darling. Big hugs.xxxx

  • I will wait, just needed a moan. Don't really fancy sitting for hours in an A&E when there are emergencies to be seen .i will cope x

  • Ring 111 and speak to someone on there and they will get you to see a dr, you won't need to go to a&e darling.cxxxxx

  • Hi,

    Sorry to hear your struggling, this disease pushes us to the limit!

    Are you taking any NSAID's ? I have found that the combination of the DMARD can help. Maybe you could call your rheumy nurse and ask for advice? I hope you get some relief soon.

  • Has you DR ever put you on Mobic???? That seems to help out a lot... Try getting your doc to give you this medication. This will help with the pain and inflammation.

  • I feel for you there's nothing worse than being in pain if it gets too bad then phone 111 as Sylvi says don't suffer in silence

  • If there are no medical contra indications ask for a steroid injection. I'm between medications & have taken nothing since June when I had 80mg Depomedrine. I'm slowly getting the aches & pains back.....but they are bearable until I start my new meds next month.

    As others have said...don't just put up with pain....speak to your Rheumy nurse, I find them really supportive.

    Hope you get relief soon.

  • I had a steroid injection about 4 weeks ago as I was going on holiday. It gave some relief bit now it must be wearing off. I had one a few years ago to help with me travelling to Austrailia and it worked great but not this one

  • I seem to have had a lot of these jabs in between changing meds & it seems some last really well & others fade quickly.

    I'm on (I think) my 10th week post jab & as I said the pain is creeping back....if it gets too bad before my infusion in October Rheumy says he'll give me a top up.

    Don't know about everyone...but I am thoroughly fed up with doctors,pills, jabs & everything to do with this wretched RA!

  • Perhaps it is time to look into the non toxic ways to control the disease. The chance for success procentage wise is about the same as with the meds.True that there is not enough research to back this up, but there is a lot of anecdotal evidence and a growing number of prominant doctors that treat their patients with RA with a functional holistic approach and have very good results.It is always worth a try. For me it has worked and I am so very happy that I chose to try this route first. And the fact remains that whatever treatment route you chose you are always taking risks. I wish you luck😊

  • I have thought about that.....but amongst friends, both here & back in the States who tried (& some still do) the holistic route, I'm the only one who hasn't got any badly compromised joints & the only surgery I have had was a carpal tunnel decompression - versus their knee & hip replacements & various shoulder surgeries.

    Maybe I'm just lucky & although my RD is painful it's not the sort that destroys joints? Mind you I'm an odd ball who doesn't like chocolate or cream, I only eat poultry & fish & veggies, & I if I have a drink I only drink Champagne (unfortunately Aldi not Bolly!)

    When I read some of the recommended diets to cope with RD......I think I'll stick with the meds.....but if a diet suits you & you like it, & feel it is keeping the pain at bay....each to his own!Bon appetit!

  • The AIP diet his hard, but I find the thought of toxic meds even harder. Besides the diet I have been taking LDN and am very perticular with the supplements I take. From beeing diagnosed with negative RF and high inflammation markers in Dec 2015 have normal markers and nearly pain free with no swollen joints. True that it may not work for everyone but you never know until you try. Many have taken the med route without getting relief and turned to try other possibilities and have found a way to control the disease without the meds. Nothing is black and white in this world😊. All the best to you.

  • Hi Simba, where are you? I have heard of LDN, but I don't think they include that in their arsenal here in Canada, as it's a pretty new concept. I felt the best under AIP (digestively and at the lowest weight of my adult life), and I found that dairy, wheat and nightshades are problematic for me (mostly digestively), but when I am tired, cranky, stressed & in pain, I tend to choose "easy" foods (I end up eating a lot of bananas, lol) and now it's hard to convince myself to cut those foods out again - even knowing how much better I felt then. It's illogical, I know, but...

  • Yes Karen77, It is sooo hard but then I remind myself how it was before the diet and how lucky I am not having to take the toxic meds and all the suffering that so often comes with them. I live in France and get my LDN shipped to me from UK. Works really well. There are lots of people in Canada that use LDN. If you are interested to learn more, go to ldnreaserch.org. They have a lot of information and help people all over the world to start LDN therapy. Really worth a try. Doesn't work for everyone just as the toxic meds don't. Good luck😊

  • Thank you.

  • Hiya Ellie. We had a member a few years ago who had NAFLT thought to be caused by MTX. She had AS not RD but if I remember correctly her Rheumy took the decision to progress onto antiTNF's/biologics. If it would help to read her journey I could give you her username, she's not been around for a while so I wouldn't think she'd mind. Just pm me if you think it would help. x

  • Ring your rheumatology nurse and explain everything to them. The nurses at Oxford where I go usually get you an appointment if you are struggling. Sometimes you have to keep ringing until they listen. Good luck.

  • Why did you stop the MTX? I had to stop back in early March for my liver. My liver is perfectly fine now, but my WBC is low (3.8 when "normal" is 4.0-11.0) so they still won't let me start Arava. I find the whole thing frustrating but then I just plod on, hoping that next month will be better. My RA is active like yours, but I have good and bad days. It's just so frustrating, and I want you to know that you're not alone. Gentle hugs to you!

  • ellieellie,

    I agree, try ER and hopefully they are able to give you some relief. Prayers and Ooooxxx

You may also like...