not taking meds

Hello my name is Maggie and i am new to this site.

i was diagnosed 2 years ago with RA my GP refferd me to see a rheaumatologist at our local hospital...2 years on i am taking sulfazalazine,hydroxocloraquin, and Mtx 15 via injectioneach week. i have no deformaty but do have a lot of pain.

i went to the hospital 2 weeks ago (it was an extra appointment due to pain increase) i was told that the pain i had was caused by fibromyalga....and they couldnt do anything! they have arranged for me to attend a Gym they say this will help the pain i walk to work every day and i try to swim. I take paracetamol and Ibuprofen and some days it doesnt even take the edge off... as a result of this i feel so fed up with it all i havent taken any of my meds since...i have an appointment next week to see my GP (not sure how he will react).

has anyone else ever done this or can anyone give some advice it all gets a bit much doesnt it? i still have blood test every 6 weeks, and i work full time, and it isnt always easy to get the time off.

11 Replies

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  • Hi Maggie.

    I agree with you, it all gets too much to bear. I take the same as you. Hydroxychloroquine, MTX injections and Sulfasalazine. But I don't have fibro, and I can't imagine what that's like. But there are lots of kind people on this site who will be along to help soon.

    I often get really stressed and stop everything. Then I start all over again when I have calmed down again. I had to stop work as everything got too much. Maybe you need a short break from work or could you work part time? I have been so much better since I stopped trying to do too much.

    Hope your GP is helpful and sympathetic. Good luck!

  • I have ra and fibromyalgia,don't stop your meds it won't help. I have drugs for the fibro as well as the ra.Don't let them tell you that there is nothing that they can do, it a load of B""""""s,god people like that make me mad. yes exercise is supposed to help,but how can you do that when your in so much pain. Swimming,pilates and yoga,i'm having a flare at the moment so i'm having problems getting about. When you see your gp so speak to them and tell them what the hospital has said and tell them about how you feel. Ask about pregabalin and amitrypteline(excuse the spelling). Hope this will help you. sylvia.

  • Hi Maggie, sorry your feeling so rotten at the minute, but I know exactly how your feeling. I worked full time and spent my home time resting/sleeping so I'd be well enough for work on a Monday morning.

    I too often went through phases where I'd say "enough is enough, I'm in charge of my body and I'm not putting any more of these chemicals into it".

    Initially I always felt better mentally as I'd taken charge, ha.... Big mistake and it wasn't long before I was back up to taking everything even the BP meds and anti-constipation meds.

    My consultant laughed and said when I rebel and try to take some control back and it's me mentally lashing out at the world, but in reality I was actually hurting myself.

    Anyway I left work last yr and finally got my life back under control, my meds are sorted now (and working at the minute), I don't get so exhausted and I can rest as and when I need to, I'm still in pain but I can manage it better because I'm not tired all the time.

    Also, there are many combinations of different drugs some work for some and not for others. I can't take Sulfa or MTX so I'm on Leflunomide, 3mthly Kenalog steroid injections and painkillers/relaxants (Tramadol and Amytriptyline), sadly I can't take TNF's.

    So if your still in a lot of pain tell your doctor your not getting the benefit from that combination of drugs and you'd like to try another Disease Modifier or if your RA is very active you could request anti-TNF's.

    Good luck Beth xx

  • I am so glad to have found this website, it is so helpful. I get caught up in it for hours, which isn't always a good thing haha!!!

    I stopped all my meds almost 7yrs ago due to methotrexate toxicity. i am left w/alot of muscle weakness.

    Anyway i felt so much better off the meds, i ate a strict veg diet and did well for 5 yrs. i didn't even take advil as my stomach couldn't handle it. I regained mvt that i had lost for awhile,and didn't have pain, and i was working as an athletic trainer. then i did start to get some loss of joint mobility and deformities, so , although i felt better, i was getting alot of damage. I had to give up my job due to pain and lack of strength :(

    I have moderate to severe ra, 20 yrs now and it has started to flare in the past yr. I am also trying to figure out what to take as i am now afraid of meds. I am in alot of pain and have some loss of joint functions and i can;t walk very far due to muscle fatigue and tendonitis, so we gain and we loose either way we go .

    i hope this helps. Good luck. How are you doing on the sulfasalazine? Has it helped w/ the pain and joint mobility? i am faced with that or enbrel !

    Good luck, nancy

  • Hi Maggie,

    I am so sorry you have had such a rough time, I guess you have to do what's right for you.

    I was misdiagnosed 18 months ago, and for the first 9 months I didn't take any medication, once I was diagnosed, I was on different combinations - i have just started TNF, and I am sorry you cant have it, but I do hope you find something that eases your pain and your sysmptoms.

    Take care, and know that you have found a site full of really wonderful people - we all have one thing in common - RA - and we can support eachother!

    Pen

  • Often times, people will have RA and Fibro. They might have one as a primary and a secondary. I have primary RA and secondary Fibro. It is possible and common to have both. I would recommend seeing a rheumatologist for another opinion. There are things out there to help both! I have daughters with both also.

    Walking is wonderful. If you can get to a hot tub it works well too.

    Just remember that you are remarkable for working and trying to deal with this. Getting a good doctor to sort out your pains would help a lot.

    Good luck to you!

  • Maggie, You are on your way...think forward, don't look back. It is very important that you allow a Rheumatologist to manage your RA and possibly, Fibromyalgia.

    I have found Rheumie's to be highly educated, very well informed, they keep up on every new result to come from the Arthritis Foundation Research Labs. They only manage patients with all the Auto-immune diseases, so their mind-set is not scrambled with other matters they don't deal with. Be assured, they are all MD's or DO's, so they also can recognize any other problems and be able to sort them out.

    The people here, I have found, are also very highly informed. They have done their homework. We must keep ourselves informed, know all there is to know about our meds and the disease. Education is the key to rehabilitation.

    I have only been here just a week, have introduced a bit about me, and feel like I have been here alot longer.

    I hope you will soon feel the same and most of all, I hope our suggestions will help you do what's best for you.

    I can relate to the work situation. I worked fulltime for 17 yrs in one place, I loved it, it was my social life too, outside of my home and four sons and husband. It was an awful lot of continuous work, I know I worked far longer than I should have. Thus my spine has been so badly damaged, I've had 8 spine surgeries,including fusion of three vertebrae in my neck. My entire spine is full of metal! Both knees replaced and three hand repairs. More to go there.

    Don't let this happen to you. If you can at all manage, working part-time might give you enough relief. You are feeling so much pain now because your body is not getting rested and restored from one day to the next. Working every other day would be best. Fibromyalgia responds to the same exercises and most meds used for RA. Your Rheumatologist can help you sort that out too.

    All the best, do let us know how you are doing, as you go along. Take care of YOU! Loret

  • I have RA and fibro.. with the right medication which can take time!. some occasional light exercise.. things will improve.. hope you feel better soon

    Alison x

  • thank you everyone that has replied i will take it all on board....i am off to see my gp tomorrow so i will keep you informed. x

  • thank you all of you, such good solid advice from people who know what they are talking about.

    i saw my GP yesterday who was very sympathetic and listend to everything that i had to say and let me cry as i also need to cry a little.we spoke at length about the issues surrounding me not taking my meds he said he would support me either way.

    I am back on my meds as from today so its just been a month that i have been off of them, i am too frightend to not take them, but am also frightend of the side effects that i will get once i am back on them.....cant win either way.

    My daughter was desperate for me to start taking them again as she was so worried about my quality of life.

    so my friends onwards and upwards it is...no looking back now.

    Maggie xxxx;-)

  • Hi MAGGIE,

    My name is Cathy and I was diagnosed in 1994 with RA.I also have Ra,Osteoarthritis & Fibromyalgia.....I am in th exact same situation as you are right now. I was taking Arava &Mobic for my RA and it started hurting my tummy also making my hair come out so I stopped the meds myself..I wanted to tell you to talk to your doc about taking Cymbalta for your Fibro, and if you have depression(which I do) its great for that too.Killing two birds with one stone... Anyway i can feel for you..Anyway i hope this helps you some. Yes the pain of the RA & Fibro is horrible,I get so down sometimes just sitting around thinking about the future,,but hey if you need to talk I am here,,,,my email addres is dallyspot85@hotmail.com as i dont get on here very often and I do check my emails daily so reply on th email please..hey good luck and seriously, try the Cymbalta, its a God Send!!!!!!!!!!!!!Your friend,,,,Cathy Smith:)

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