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sylvia
#1 Posted : Wednesday, April 04, 2012 5:17:36 PM Quote
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Location: kilwinning north ayrshire
hi folks, i hope you are all ok, im just back from apointment to get bloods taken and talk with doctor, i explained im still feeling sick, very tired, and i get gum in fections on methtrexe, doctor said to stop using it and has given me ARCOXIA 90MLBigGrin is anyone else on this i have not to take naproxin just 1 of these a day would like to know if anyone else on it sylvia xxx
Rose-B
#2 Posted : Wednesday, April 04, 2012 8:57:46 PM Quote
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Hello Sylvia,

Sorry to hear things not too good. Having a sore mouth is horrid isn't ?
Sorry though I have not been on this drug so I hope someone comes on soon.
Can the GP change your drugs though without contact from RA Department


Rose x
Dorothy-W
#3 Posted : Thursday, April 05, 2012 2:19:06 PM Quote
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hi sylvia hope you are a bit better i have been on mtx for 2/3 yrs and now on inj,i had those feelings when i was on tabs ,thankfully i only get a bit iffy for a short time on day of jag, i also got a sore mouth and i have dentures which makes it worse,i did change my diet to more fruits and veg,lots more water etc and it worked for me i also lost 2st,i try and get out as much as poss so as not to get down,i felt my moods made things worse than they were, i now feel alot better in myself,still on original mix,mtx and hydroxy with folic thrown in and pain killers just for fun,good luck with the new trial,hope it goes ok,i too thought the gp had to refer to ra dept for a change of meds,dorothy.
Kathleen_C
#4 Posted : Thursday, April 05, 2012 4:58:34 PM Quote
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Hi Sylvia,

Was it your GP who stopped your methotrexate? Arcoxia is not a DMARD, and therefore doesn`t slow down the progress of RA. I`m pretty sure it`s a NSAID, which relieves the pain of inflammation, and does the same job as naproxin, diclofenac etc.

The gum infections sound nasty, but can happen with MTX. If you have a rheumy nurse it would be best to talk to her about the problems MTX has given you. Are you perhaps on another DMARD, alongside MTX?

My GP sorts out my anti-inflammatories as and when I need them, but wouldn`t prescribe Arcoxia as he prefers others in my case, due to the fact I`m on medication for high BP.

I hope this helps, but I really would check things out with your rheumy department.

Kathleen x

jeanb
#5 Posted : Thursday, April 05, 2012 6:11:14 PM Quote
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Hi Sylvia

Sorry to hear you are nor too good at present. I agree with Kathleen and would check this out with your rheummy team asap.

Take care

Love Jeanx
LynW
#6 Posted : Friday, April 06, 2012 2:26:32 AM Quote
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Hi Sylvia

Gum infections and ulcers are quite common with methotrexate and often it's a case of weighing up the benefits against the side effects. The sickness could be alleviated by switching to methotrexate by injection. As Kathleen suggests you do need to check with rheumatology whether it is the consultant's wish for you to stop the medication. This is normally outside the remit of the GP, unless special circumstances prevail.

The GP can adjust pain relief and anti inflammatories but RA specific meds are normally controlled by rheumatology. Arcoxia is a Cox 2 inhibitor (coxib) which may provide some anti-inflammatory relief only. It is however only a symptom reliever and will not control the RA (Methotrexate, as a disease modifying drug does this!). Naproxen is a commonly used NSAID for RA as it is particularly effective when used with Omeprazole for stomach protection, so unusual it should be stopped and replaced with Arcoxia.

Personally, I would continue with methotrexate until you are able to discuss with rheumatology. Hope you are able to get an early response.

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Naomi1
#7 Posted : Friday, April 06, 2012 11:02:54 AM Quote
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I can only agree with what the others have advised. Stopping Mtx is a huge decision and one that should only be made between you and a rheumatologist, except in case of emergency. GPs are not the experts when it comes to RA and dmards and there may be something the rheumatologist can do about the mouth infection or they may want to line up another dmard before stopping the Mtx. I think you should get an opinion urgently. Maybe you could talk with the rheumatology nurse or the consultant's secretary over the phone. Meanwhile I hope the infection clears up. It sounds painful and distressing. Good luck from me.
Rebecca D
#8 Posted : Friday, April 06, 2012 2:03:48 PM Quote
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Hi Sylvia

I have been taking Arcoxia for about 18 months, it's an anti-inflammatory drug, it has less risk of stomach ulcers compared to other NSAIDS. It's one of the best anti-inflammatories I have taken, I hope it helps relieve your pain.

Best wishes
Rebecca x
suzanne_p
#9 Posted : Saturday, April 07, 2012 4:37:32 PM Quote
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hi Sylvia,

i have taken Arcoxia in the past as an Anti-Inflam for the Osteo Arthritis i have in my knee's. ( don't use it now )

but i am also puzzled as to why your Doctor has stopped the Methotrexate, my GP has no control over my RA Drugs .. this is totally under my Rheumatology Department from the Hospital.

if it was your GP making this decision i also suggest you contact your Rheumatology Dept as soon as possible.

do let us know how you get on,

Suzanne
sylvia
#10 Posted : Saturday, April 07, 2012 6:35:43 PM Quote
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Location: kilwinning north ayrshire
thanks everyone for quick replies, my doctor has R/ARTHRITIS as well and he camre of mtx and he has been on arcoxia for about 7 month and feels lots better,

i will phone rhummy nurse but have to wait for what seems like weeks for her/him to get back to me as there are only 2 rhummy nurses in the whole of north ayrshire so i could wait months, my doc said at the worse if i flare up then i can go back on mtx start at beging again or try something else, i was not happy on mtx from the start injections not good sick sore gums cold sores last year in hospital with chest infection and was not aloud to take mtx anyway, im fed up having to go to chemist everytime i dont feel right and to have to tell chemist im on mtx as there is so much you cant take from over the counter if on mtx, i will see how it goes, ive to go back to doctor in 3 weeks im still to take folic acid and p/ relief if i need it will keep you all posted xxxxx
sylvia
#11 Posted : Monday, April 09, 2012 6:01:34 PM Quote
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hi lyn, yes its anti inflammatry also take folic acid i have tried and tried to get rheumatology dept on phone cant get them as i have said there is only 2 in the whole of north ayrshire so its nearly impossable to get them im sure my doctor would not advice me to stop if he thought i was in danger ?? if it doesnt work i will go back on mtx i just want to try i hated being on mtx sylvia xx
LynW
#12 Posted : Tuesday, April 10, 2012 2:00:49 AM Quote
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Hi Sylvia

I wish you every success and hope the break from MTX will not cause a flare in RA symptoms or deterioration of your joints.

I initially started out on anti inflammatories, steroids and pain relief. The use of DMards was relatively unknown 24 years ago and consequently I have much damage that could have been avoided had today's treatments been available then. No medication is without side effects of one sort or another, it becomes a balancing act. Once damage occurs it may already be too late to correct by medication, the only option to correct deformed joints is usually surgery. I have been down that route several times too!

Clearly the Rheumatology service in Scotland is very different to that available in England. Such a shame you are unable to contact them by phone. I wouldn't go as far as to say you are in danger but without the disease modifying action of methotrexate you run a risk of incurring permanent joint damage. Anti inflammatories and pain relief control the symptoms, NOT the disease. Folic Acid is prescribed only to reduce the toxic effects of MTX.

Perhaps it would be worth having a chat with the NRAS helpline for their thoughts.

Good luck,

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

Naomi1
#13 Posted : Tuesday, April 10, 2012 8:00:18 PM Quote
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I think that's really good advice Lyn. The thing is with joint damage is that once it's done it's done and none of us wants to risk having to go through surgery.

I'm quite shocked at the lack of nurses on hand to answer your concerns Sylvia. I took it for granted that expert advice would be available at short notice all over the UK. I go to the Torbay Hospital in Torquay for my treatment and there are a team of at least 3 rheumatology nurses at this hospital. They run a fantastic open telephone line for all us rheumie patients between 2 and 4 pm on weekdays. I have had to phone on about 4 occasions in the last year due to symptoms and drug issues. I have always got straight through on a direct line and received reliable advice. If the nurses are unsure they will always ask the consultant for information. This has been a godsend because when it comes to RA matters I trust the nurses far more than most GPs. I'm so sorry that you don't have access to a similar service.

Best wishes from Naomi.
sylvia
#14 Posted : Wednesday, April 11, 2012 3:40:36 PM Quote
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thanks, naomi, i will see how i go as im going back to doc in 3 weeks i dont think i will do much harm in that time, i think its terrable we only have 2 rhummy nurses for whole of north ayrshire, my doctor knows a lot about RA and know he would not take me of it on a wim, i read up on mtx and did not like what i read, i have a friend who is a lot younger than me she gets her bloods checked every 2 weeks and told they were satisfactory but she still ended up in hosp with something wrong with her liver after been to her doctor 3 times not feeling well, she decided to go hosp her self and was admitted, what is satisfactory is it good better than good lower than good, why cant we just be told what it is, i get very disapointed with consultent you have to wait 9 months to see them, you are in 10 mins then out lol rhummy nurse you have no chance,

on a better noteim feeling a lot better in my self hope it keeps up will let you know hope we all stay well sylvia xxxxx
jeanb
#15 Posted : Wednesday, April 11, 2012 3:47:40 PM Quote
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I'm sure your GP knows a lot about RA Sylvia - but I am worried for you. As the others have said, coming off MTX is a huge decision for a GP to take without consulting your rheummy team. Please speak to the NRAS helpline - they are brilliant and will give you some solid medical advice.

You are quite right, MTX IS a scary drug, but without it, I'd be unable to even stand. The reason we have regular blood tests is to make sure anything out of the ordinary is picked up immediately.

Take care, Sylvia and let us jnow how you get on

Much love
Jeanxxxx
sylvia
#16 Posted : Wednesday, April 11, 2012 3:54:05 PM Quote
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Location: kilwinning north ayrshire
hi rebecca, where you on mtx ??? i just didnt feel right the 3 years i was on it will try and get to rhummy nurse im sure my doctor would not have taken me of it if he was unsure xxxx sylvia
anne_t
#17 Posted : Wednesday, April 11, 2012 6:02:37 PM Quote
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Hi Sylvia,
Have you tried ringing your Consultant's secretary? We are all slightly different in the way
we respond (or not) to any of the treatments we are "advised" to take. It does make a
difference when we trust our GP and can have proper two-way conversations.
Please take care Anne
Rebecca D
#18 Posted : Tuesday, April 17, 2012 5:46:19 PM Quote
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Hi Sylvia

I tried methotrexate by oral tablets and injection in 2005 and it made me so poorly, I just couldn't continue on it. I have been on Enbrel since and take arcoxia as a painkiller. Like everyone says you need to be on a disease modifying drug otherwise the Rheumatoid will have a feast on your joints.

I hope you can find a treatment that works for you.

Best wishes
Rebecca
Julia17
#19 Posted : Tuesday, April 17, 2012 8:37:16 PM Quote
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Hi Rebecca

Just had to post and say, what a great analogy " feast on your joints " ! says it all.

Julia x
sylvia
#20 Posted : Tuesday, April 17, 2012 9:09:00 PM Quote
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Location: kilwinning north ayrshire
thanks everyone for post my doctor taking good care of me and as he said if it doesnt work then i can go back on mtx so far so good, i just wanted to come of it for a while

i will keep you all posted on my progress if my joints start playing up doctor will put me back on it or try something else, i do feel like a weight has been lifted of my shoulders
and feel a lot better in my self for a wee while anyway hope everyone keeps well sylvia xx
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