learning about different medications for ra

[mary4444]

hi my name is mary i have ra and osteoporosiis i was diagnosed 8 years ago i live southend on sea i take tramadol and find them very good i am not sure how healthunlocked works as i am new will post this and see what happens

[popsmith1874]

Hi Mary and welcome to the gang, you are in good company here as we are all in this together and everybody on this site understand what your going through, I have RA and OA and have had it since 2014

[mary4444]

hello popsmith lovely to get a reply it is great to be among people who understand i never knew about healthunlocked came across it when browsing i think its a great idea i have been reading some of the posts and they are really touching and i think we can learn a lot from other peoples experiences

[sylvi]

Welcome Mary we are a support group and we all enjoy a laugh as well as sometimes this is the only thing that gets us through the hard times. Ask anything you like even if you think it is silly to you,you will find someone has probally asked it already.If your feeling bad or good and you have something to share lease share it with us,we love good stories and we support each other through hard times as well,so don't be afraid to ask anything and again welcome to our gang.xxxxx

[mary4444 in reply to sylvi]

thank u sylvi for your message still not sure how this works but will get the hang of it i never knew anything like this excisted i think its great and will look in every day makes u feel so much better knowing other people in the same boat and yes i also enjoy a good laugh ty xxxx

[mary4444 in reply to sylvi]

does any one in the group have aldronic acid infusions once a year for osteoporosis hope i spelt it right lol x

[nomoreheels]

Hiya & welcome Mary. Well, we have something in common, other than both having RD & OA, I was diagnosed 8 years ago too! I hope it helps being in contact with others in the same boat & I'm sure you'll soon find your way around the site. I have a question, you only mention tramadol, do you not take any other meds?

[mary4444 in reply to nomoreheels]

hi mary started on methotrexate for 8 years then it stopped working so hosp said it was time to take biomedication with my methotrexate so i did had cimzia i felt really ill its a good drug but did not agree with me then i got visual disturbances was seeing zig zags went to optician had tests and she said it was something i was taking so i stopped all medication except tramadol for pain been off it all for about 6 weeks still getting visual distubances but no more sickness and feeling crap lol dont know how long till flare up back to hosp in march

[nomoreheels in reply to mary4444]

If you take many meds it can be difficult working out which is causing problems but stopping them all would have concerned me but I guess if it's eased some it is worked to a degree. Did you stop them on just your opticians advice or was your Rheumy involved? Trouble is as well do you know which it was so you can reintroduce any? It is a difficult one & more so as you'll have had no form of treatment (apart from the tramadol) for over 6 months by the time you're next seen by your Rheumy. I really hope you can be seen quickly if you take downward turn.

[mary4444 in reply to nomoreheels]

hi thank u for reply at the time i stopped medication i was having 22.5 methotrexate but had lots of inflametary in my hands so hosp said it had stopped working and needed a boost so i had 2 injections of biomedicine cimzia got ill blood pressure sky high my doctor stopped cimzia and at the time also visual distubances so i told hosp i wanted to stop methotrexate till eyes get sorted they wasnt happy i go back to optician 6 months and see if there any improvement my doc doubled blood pressure pills and i will see her next friday sorry if i rambling on its hard to explain but i feel fine at the moment just took friends dog for walk it will be interesting to see how things go are u on methotrexate xx

[nomoreheels in reply to mary4444]

I'm really pleased you're ok at the mo Mary but do take care & at the first sign of problems do contact your Rheumy nurse. Yes, I'm on MTX, my second DMARD, currently 17.5 mg injections because any higher I have side effects. Been on it coming up 7 years & hope it will last a good while longer but because I'm unable to increase the dose I'm adding leflunomide soon. Tried hydroxychloroquine (my first DMARD) & sulfasalazine so running out of options!

[mary4444 in reply to nomoreheels]

i will be at hosp 29 nov to see doc as also got osteoporosis and they do that in the same place as rhuemy so they bound to bring up about no medication they will have it on my records they offered me hydroxychloroquine then put me on cimzia how did u find the bio drug ? i use to take sulfasalazine didnt like it use to make all your tongue yellow i had that in the begining lol xx

[nomoreheels in reply to mary4444]

That's not too bad then. You're fortunate that your OA is dealt with at hospital, my Rheumy refers me back to my GP, not that she isn't helpful but it does concern me somewhat , it feels as though she considers it inconsequential but it is musculoskeletal after all. I'm not on biologics, only had DMARDs.

[mary4444 in reply to nomoreheels]

nomoreheels sorry to be a nuisance i keep getting told i need t o press follow dont understand is this nrsa cite took me ages to get back here xx

[nomoreheels in reply to mary4444]

You're not a nuisance Mary. Yes, this is the NRAS site but I don't understand why you're being told you need to press follow, what happens when you do? You have a profile so you're a member, unless you were in another HU site when you joined.

[mary4444 in reply to nomoreheels]

mayby i pressed something by mistake when i first came on when i went on nras site in the begining it kept saying one recipent is required so something not right never mind i get here in the end lol

[nomoreheels in reply to mary4444]

I've just checked your profile page Mary & you've been on Pain Concern forum so wonder if that's something to do with it? On the top bar immediately above here you'll see 'My Communities', it's a drop down box, click on it & tell me what it says.

[mary4444 in reply to nomoreheels]

thank u for your your help i just had a look it says nras then there is a cross browse communities so looks ok do u know at the top of the page there is a bell symbol and it gets numbers come next to it not sure about that unless it means a message lol i will be back later they doing survey on the bio medicines also i learnt a few things about ra that i didnt know this is good site hope u ok xx

[nomoreheels in reply to mary4444]

That means NRAS is a community you're a member on so it shouldn't keep asking you to follow. The bell symbol will have a number next to it in a red circle, this tells you you've received a Like or a response to one of your replies, just tap on it & it'll reveal who from. Click on the responders username & it'll take you to the message. I'm pleased you're finding the site helpful. x

[mary4444 in reply to nomoreheels]

thank u nomoreheels u have been so helpfull i think i got the hang of it now at last hope u doing ok had e blood test it was showing something to do with my white blood cells they wouldnt tell me on phone but seeing my great gp on friday lucky got a good doctor what hospital do u attend i am southend x

[mary4444 in reply to nomoreheels]

hi nomoreheels dont laugh i just replied to your message and sent it to myself so the message hi mary was meant for u about taking tramadol x

[nomoreheels in reply to mary4444]

It's ok, you can call me anything as long as it's not names!

[mary4444 in reply to nomoreheels]

lolxx

[Hidden]

Hi Mary4444,

I don't know if you are aware of this event being held in Southend-on-Sea next week:

NRAS Southend-on-Sea Rheumatoid Arthritis Information Evening

Saxon Hall, Aviation Way,

Southend-on-Sea, Essex, SS2 6UN

Wednesday 9th November 2016

6:30pm–8:00pm

Presentations and Q&A session with an expert panel including healthcare professionals from the rheumatology team at Southend General Hospital.

Please let us know if you would like to attend by calling 01628 823 524 and ask for Kim or Gill or by email to [e-mail].

Kind regards,

Gill - NRAS

[Ruffles13]

Hi Mary. Just read your post glad you have some relief with tramadol. I have had RA for 2 1/2 years and been on three different medications I have recently got a copper magnet bracelet and am feeling a lot better already.

[mary4444 in reply to Ruffles13]

hi ruffles thats strange i also bought copper magnet bracelet from my local chemist and will try it what medications have u been on for your ra

[ruth_p]

HI Mary4444 welcome to healthunlocked. I only discovered the site a few months ago, I was diagnosed 21 years ago. I'm on mtx with tocilizumab (my 3rd biologic treatment) which works really well for me with very few side effects. Hopefully they can sort out your meds. I took tramadol when I needed my hip replaced but couldn't tolerate it.

[mary4444 in reply to ruth_p]

hi ruth yes this is great site everyone seems so nice and very helpfull so u have tried 3 biologic i have read lot of people on that drug is it steroid ? have u tried the cimzia bio drug they say its great didnt agree with me at all lots of people dont get on with tramadol took a while to get use to it now wouldnt be without it 2 in the morning and 1 at night x

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[ruth_p in reply to mary4444]

No not a steroid it's another biologic. I never had cimza. I was on tramadol a month and lost about a stone in weight. I threw up twice at work and just felt sick all the time.

[mary4444 in reply to ruth_p]

hi ruth yes i use to get nausea and weight loss but its all settled down now i was offered morphine patches but i didnt want to go on them are u ok on your medication now? x

[ruth_p in reply to mary4444]

Yes I'm very well controlled now. I take mtx 17.5mg by injection once a week with folic acid 6 days and tocilizumab by injection once a week. I had a massive flare last year when the Humira stopped working completely but the tocilizumab started working 24 hours after my first injection which surprised everyone. Since starting it I've stopped taking leflunomide as well. I work full time as a Reception Teacher and go to the gym 3 or 4 days a week. Side effect wise I suffer from allergies and itchy skin. Headaches from the mtx were sorted with the change to injections and increasing my Folic acid.

[mary4444 in reply to ruth_p]

hi ruth yes i was on mtx 8 years and yes dreadfull headaches and also the nausea i have stopped all med coming up to 7 weeks still take the tramadol going to see how i go also got the itcy skin i use to use a oil lotion when i got out shower that really helped do u get night sweats doc done some blood tests will see her next friday i go into hosp 2 weeks time just for afternoon as also got osteoporosis and have infusion of aldronic acid for the bones haha happy days but like u i keep on the go i love walking i got good tollerence to pain that tocilizumab sounds good never heard of it before i suppose all hosp have different methods do u think biomedicines are good x

[ruth_p in reply to mary4444]

Yes the biologics are brilliant. Toc is my third one but it all depends on which one suits you best. My body's immune system built up a tolerance to the anti TNF ones. But the tocilizumab blocks the protein that causes the inflammation.

[mary4444 in reply to ruth_p]

thanks ruth for information will keep that toc bio in mind the trouble now is only get bio when inflamation is at a high score when they put me on cimzia my metx had stopped working so cimzia didnt agree with me so i stopped medications doctor recomeded it not taking anything except tramadol and the weird thing i feel better without will see what my blood test shows next friday all i been told is something to do with white cells and doc will explain glad to hear u doing well x

[ruth_p in reply to mary4444]

The thing is the tramadol might be controlling the pain but the disease will damage your joints if it is left uncontrolled. They usually offer biologics if you have failed on two dmards but it also depends on the hospital. The first biologic offered would probably be enbrel or its biosimilar benpali which a lot of people do very well on. It worked brilliantly for me for 2 1/2 years. Good luck with your appointment. ☺

[mary4444 in reply to ruth_p]

yes i was offered biologics thats what i went on cimzia but it didnt work for me only had two injections blood pressure sky high nausea and felt really ill went to doc and she recomended the drug be stopped no inflamation at the moment we will see glad u r sorted at the moment keep well xx

[mary4444 in reply to mary4444]

ruth see doc today she said i have no inflamation in my body my blood tests were good she said white blood cells are low but that is the ra nothing to worry about also blood pressure high i will be going back to doc in two weeks cant believe no medication must be 7 weeks now and i still feel fine been down southend high street most of the day hope u doing ok how did the meeting go xx

[Lisashoemad]

Hi Mary im also from southend on sea, i have RA, and fibromyalgia, and was also due at southend rheumy on 29th nov, but had an appointment that clashed, so now going in december, Gill the lady from NRAS posted about the info evening tonight over near the airport, lots of our hospital team are going to be there, i will be going, should be informative, Feel free to contact me..lisa x

[mary4444 in reply to Lisashoemad]

hi lisa fancy u come from southend as well i am in westcliff next time they have a meeting i will try and get there i just came back from having blood test at doc got to go hospital wed afternoon for a fusion also got osteoporosis as well as ra i know someone with fibromyaglia that is so very painfull what meds are u on and how u doing xx

[mary4444]

hi everyone went to doc today my blood results showed no inflamation blood pressure still high going back in two weeks to see if it has come down any also my white cells low but doc said ra causes that so not bad results at the moment 7 weeks no medication nothing has happened yet still taking tramadol doc has changed them to slow release dont know what difference that makes hope everyone else is doing ok i love this site xx

[KittyJ]

Oshgosh this post is 5 years old so you may not get a reply😊

[Oshgosh in reply to KittyJ]

Thank you,I don’t know where old posts come from