Nothing works.

Hi. I was diagnosed with RA nearly 3 years ago. Medication has been added and added, but I am getting worse and worse. So far I take,

10 x 2.5 mg mtx once weekly

2 x 300mg hrdroquinoric daily

3 x salazopryn twice a day.

Last weeks blood tests have come back with my c reactive protein level high at 20.3.

I feel like the medication isn`t worth taking. My feet hurt so much I rarely wear anything on them as it exacerbates the pain, and my hands are always swollen and sore. My neck is painful too. I had a steroid injection into my hip joint earlier this year, and that relieved most of the pain in the rest of me for a few weeks.

I am so fed up. My quality of life is rubbish. I am in bed for around 18 hours a day.

I am seeing my rhuemy next week. Not that they do anything but increase my meds, but I think I am on the max dose of everything I take now.

Moan over.

[kizzy12]

hi....i know how you feel ...i have had it nearly 10yrs now and still not found anything that works....have tried so many different drugs but nothing makes any difference...i have no life ....i came very close to ending it last year but i couldnt do it to my son as i am all he has....i have an amazing doctor and the rheumy team are great ...just cant seem to find the right drug for me.....will not stop trying tho..am due to start my 4th biologic soon so fingers crossed...i hope you dont give up hope..there are still so many drug options to try.. you might get lucky and find the right one soon xx

[Kittykatxxxxx in reply to kizzy12]

Don't give up kizzy! x

[Hidden]

Thanks Kizzy. I think they are trying something else this time. I hope so. I am going to ask their opinion on the flu jab. It has made me nearly bed bound for 2 weeks each year since I have been having it, and my inflammation was nothing like as bad as it is right now.When I was diagnosed I was so well compared to now.

I hope we both find something to help soon. I don`t think I could cope with it as long as you have x

[Hidden]

Thanks scouser, I will!

My blood test show my albumin is just below normal. Should I panic?

[Hidden]

Hello BOB here

Can you check the spelling of your medications please. Let me know

All the best

BOB

[Hidden]

Hi ms-steak,

Sounds like a really tough time for you at the moment. Do carry on with your meds until you have seen your rheumatologist and feedback that you aren't improving. Our helpline is closed for the day now but please call us on Monday and my colleagues can give you some information and talk in detail about the medication and what you can do next. The freephone number is 0800 298 7650. Hang in there and we hope to speak to you next week.

Best wishes,

Ruth

[Hidden]

Hi Bob. I`m sure you know methotraxate, I have spelt the other 2 totally wrong. Sorry.

Hydroxychloroquine sulphate

Salazopyrin

[Hidden in reply to Hidden]

Hey, don't worry about the spelling I knew what you meant and I'm sure others did to :). I can never spell Hydro or Sulpa after all we're not Doctor's or Consultants. Hope you feel better soon x

[Hidden in reply to Hidden]

Thanks Amanda x

[Hidden]

Thanks Ruth. I will ring on Monday.

[Hidden in reply to Hidden]

Take care ms-steak

[sylvi]

Ms-steak,i am sorry to hear your in so much pain. Have you thought you could also have Fibromyalgia as it sounds like it to me. Ask your rheumy when you go next week. I have RA/Fibro as well and i can tell you i know exactly how your feeling as i am in the same position as you are at the moment. I am waiting on ultrasound results before they do anything with me. I hope your rheumy can help you next week.xxxx

[Hidden]

Hi Sylvi.

The last time I saw her she checked all the parts of me that they check for fibro, and she said nothing. I think it could well have been developing, and I have it now. I will ask her to check me again. Thank you for your advice x

[miss]

Hi ms-steak sending you a hug. Truly hope your rheumy will put you on biologics, if he doesn't ask him/her for it xx

[Hidden]

Thanks miss x

[Hidden]

Because I live in Wales, but my rheumy is in Chester, they don`t get any of my blood results. I always get a print out so they can see what`s going on.

I will make a list. That is a brilliant idea Thanks scouser xx

[Hidden]

I'm sorry that you're having such a tough time finding a drug regime that works for you

But hang on in there, you're not alone so come on here and post and get the support that you need:-}

Hugs,

Cece x

[Hidden]

Thank you Cece. I will post again after I make my phine call and have my appointment x

[flaxton]

Hi

I haven't posted for a while I am in the same position as you and on the same meds. I too did not think life was worth living but gave my self a good talking to and have made a fight back diary and plan. I phoned the rheumy team at the hospital and have got an emergency app on Monday. I am going to push for the biologics . I want a new plan from them. The only relief I can get at the moment is from oral steroids they do work, have you asked about them. Please do not give up talk to the helpline and make a plan. Stay in touch on here.

Good luck gentle hugs

Lorraine xx

[Hidden in reply to flaxton]

And good luck to you for Monday! X

[mattcass in reply to flaxton]

Hi Lorraine, Can i ask you what level of oral steroids are you on if you don't mind, Mattcass

[flaxton in reply to mattcass]

Hi

Matt Cass I take Prednisolone have been on it 2 years as I was misdiagnosed with polymyalgia rheumatica. It works really well during a flare currently taking 20 mg daily. I am trying to get off it and only use it during flares but you have to wean off very slowly. I cannot get below 7mg daily. Also it is not advised long term but as none of the Dmards have worked

I need it at the moment.

Hope this helps

Regards

Lorraine

[Hidden]

Thanks Lorraine. Luckily I have my appointment on Wednesday. I am getting myself prepared. Plus I will ring NRAS on Monday.

Fighting back is a good plan x

[flaxton]

Hi many thanks will keep posting

[Hidden]

Well. I had my appointment yesterday. A drug is being introduced to help give me deep sleep, even though I sleep loads. They are stopping Salazopyrin and starting leflunomide in it`s place. Although they had given me an information leaflet of leflunomide, I didn`t realise the amount of checks they would do to make sure it was causing no damage. Biologics might be an option, but she didn`t think my score was high enough, she didn`t have her calculator to work it out, and wants me to try the new drug first. Right now I am seriously thinking of stopping all the RA drugs. Why put my health at such risk when nothing is getting better, in fact it`s getting worse. I don`t want to take steroids as I have type 2 diabetes, and that is badly effected by them.

I am having my care transferred to Wrexham, which is better for me as I can use my local hospital, which is less than a mile from me.

[Hidden]

How long will it take before I will know if they are doing anything scouser? It will be a while before I get the lelunomide anyway as she said to have the flu jab before I start taking it. So maybe a couple of weeks if I do.

[Hidden]

Thank you. She said up to three months. Oh joy.