Any experiences of long term use of NSAIDS ....

daisychain

Hi everyone,

I have sero negative arthritis, problems started about 6 yers ago with inflammed foot/ankle. Took ages to get diagnosed , now I have a bad knee and weakness in wrists/arms as well. Have had steroid injections which have worked miracles but not lasted more than 6 months. My arthritis is relatively localised compared to some and I find that I manage with 75mg Diclofenac every night with a stomach protector tablet. I always take with or after food (I do rely on taking this medication and really feel pain if I don't) I have never had any problems with this drug and I find it works well for me but I know there can sometimes be problems with long term use .

With regard to DMARDS like Methotrexate I have considered all the pros and cons but at the moment I am reluctant to start taking this strong drug (possible side effects worry me) although I appreciate there may be a point when I have no choice if the arthritis becomes more widespread.I do know that it should control the disease but so many sufferers appear to be taking a combination of drugs and the whole business seems a bit hit and miss.


Just intererested to know what others have done in this position, How aggressive does the disease have to be before you go down the DMARD route and all that involves ? I know DMARDS seem to be offered quickly but are there many arthritis sufferers just managing with Diclofenac or similar ? Possibly those who have tried DMARDS and coud not continue with them, have they reverted back to anti inflammatories only? I think my sero negative results and all my other negative blood tests have made me question things but possibly there are others in the same position ?

I enjoy reading all your posts , Thanks for your support.

magenta

daisychain wrote:

Hi everyone,

I have sero negative arthritis, problems started about 6 yers ago with inflammed foot/ankle. Took ages to get diagnosed , now I have a bad knee and weakness in wrists/arms as well. Have had steroid injections which have worked miracles but not lasted more than 6 months. My arthritis is relatively localised compared to some and I find that I manage with 75mg Diclofenac every night with a stomach protector tablet. I always take with or after food (I do rely on taking this medication and really feel pain if I don't) I have never had any problems with this drug and I find it works well for me but I know there can sometimes be problems with long term use .

With regard to DMARDS like Methotrexate I have considered all the pros and cons but at the moment I am reluctant to start taking this strong drug (possible side effects worry me) although I appreciate there may be a point when I have no choice if the arthritis becomes more widespread.I do know that it should control the disease but so many sufferers appear to be taking a combination of drugs and the whole business seems a bit hit and miss.


Just intererested to know what others have done in this position, How aggressive does the disease have to be before you go down the DMARD route and all that involves ? I know DMARDS seem to be offered quickly but are there many arthritis sufferers just managing with Diclofenac or similar ? Possibly those who have tried DMARDS and coud not continue with them, have they reverted back to anti inflammatories only? I think my sero negative results and all my other negative blood tests have made me question things but possibly there are others in the same position ?

I enjoy reading all your posts , Thanks for your support.

Hiya,
I'm sero-neg too! I'm literally begging for DMARDs but the rhuemys say they can't justify it ( was sulphasalazine they were going to prescribe) cos my ESR and CRP were normal. I've had probs for years and the pain is getting worse and I'd be grateful for anything-even methotrexate to try and get some normality back to my life. I am scared about the drugs but I'm more scared about what's happening to me and my joints. I'm on Etodolac, Amytriptilline and co-dydramol ( also Losec for tummy) but they're not doing anything for the pain-if anything, it's worse :?
What are your bloods like? Do you have raised Esr etc? I've only ever had one steroid injection in my hand 9yrs ago but I don't even get offered these now. I have OA in my jaw and they they're not interested in that either :?:
I wish my rhuemy was better
Magenta x

scattered

I was put on MTX as soon as I was diagnosed. I was already on etoricoxib (anti-inflam) and steroids, both of which had not got rid of all my inflammation, pain or swelling.

DMARDs are like any drug: they're all a bit hit and miss. I've been through lots of them in my almost 3 years diagnosed. I started on MTX, had an allergic reaction, moved onto sulfasalazine. Sulfa did absolutely nothing, moved onto hydroxychloroquine and leflunomide. Seemed to work for about 6 weeks then stopped, so moved again to hydroxychloroquine, adalimumab (Humira - Anti-TNF), and MTX. Had a worse allergic reaction to MTX, taken off that and put on azothioprine keep everything else the same. The Humira has given me my life back. Throughout all of this I've been on oral steroids, had steroid injections (they only last about 4 weeks for me), occassional anti-inflammatories, pain-killers. Despite this I have damage in my wrists and probably in my knees.

Personally, I would say anti-inflammatories are not enough. They relieve the symptoms of RA but do nothing for the underlying cause. Anti-inflams mask the real problem - a bit like steroids. I'm on a lot of medication and it is thanks to that medication that I can live my life. When I have to come off it, for illness etc, I flare and I flare badly. My disease has never been controlled enough that I can come off steroids. Yes the drugs are scary, yes they have some god awful side-effects but in the balance, I deemed them worth it.

I'm 21. I was dx'd when I was 19, symptoms started at 18. Without my meds I can't live by myself, I'm totally dependant on other people and would have more damage and deformity than I currently have. I have somedays when I feel like an 80 yr old in a 21 yr olds body but those days are getting fewer the more controlled my disease gets. For me, anti-inflams were not enough.

This isn't meant to sound preachy, so I apologise if it does at any point. You should do what you deem right for you. I hope my experiences can aid you in that decision, which ever way you decide.

jaspercat

Hi Daisychain, I used to be Sero-negative but have now been diagnosed as having Severe Reactive RA, I was on Diclofenic for several years they caused bad problems with my stomach and didn't seem to work anyway. As soon as I was diagnosed I was started on DMARDS straight away, I was on Sulpha but had allegic reactions to it, shame as it was working well, now I am MXT injections,

My Rheumy says that DMARDS should be started asap to lessen the speed and severity of which the disease progresses, I have no reason to doubt her as she is a well known professor in the field, I won't take Diclofenic at all now I rely on painkillers when things get too bad, really though you should have discussions with your Rheumy about what to do next, and what their opinions are, hope this helps love Jaspercatxx

daisychain

[

Hiya,
I'm sero-neg too! I'm literally begging for DMARDs but the rhuemys say they can't justify it ( was sulphasalazine they were going to prescribe) cos my ESR and CRP were normal. I've had probs for years and the pain is getting worse and I'd be grateful for anything-even methotrexate to try and get some normality back to my life. I am scared about the drugs but I'm more scared about what's happening to me and my joints. I'm on Etodolac, Amytriptilline and co-dydramol ( also Losec for tummy) but they're not doing anything for the pain-if anything, it's worse :?
What are your bloods like? Do you have raised Esr etc? I've only ever had one steroid injection in my hand 9yrs ago but I don't even get offered these now. I have OA in my jaw and they they're not interested in that either :?:
I wish my rhuemy was better
Magenta x[/quote]


Hi Magenta,

Thanks for our reply, all my blood tests have been fine although the last ones were 12 months ago now. Seems strange that you have not been offered a DMARD as I keep being told thay are the first line treatment these days, I have resisted so far but think I am reaching the point when I will at least have to give them a good try.

I too have a very stiff jaw on one side although it gets better as the day goes on and like you I am worried about what exactly is going on with my joints and want to do the right thing. I have 3 lovely children and don't want to let them down!

It is good to hear fom someone else with sero negative and I hope you find something that helps with the pain. Always interesting to read your posts.

Best Wishes ,Daisychain

Wonkylegs

I currently take Ibuprofen, MTX injections, folic acid & co-codamol when I need to. (take other stuff :roll: but those are the arthritis ones.)


I have taken some form of NSAID ever since diagnosis. I had a good 3+ years on Diclofenac before I had any stomach problems, and even then i think it was probably stress that aggravated things rather than just the meds. I went through just about ever other type of anti-inflammatory including the newer cox-2 injibitors but had bad reactions to them, or they meddled with my BP stuff.

I have now been back on the ibuprofen for 5 years or maybe more. I am fortunate that I don't seem to need to take stomach protectors (touching every bit of wood I can find as I'm typing that :shock: ) but that is in part because I changed to MTX injections rather than the MTX tablets.

As others have said - anti-inflammatories don't deal with the disease, so although you can feel better, there can be underlying damage being caused, although this varies according to how active your disease is.

I knwo that these days they are pushing the DMARDS earlier to try to stop the damage to joints that the older approach used to result in, but you are the only one who can make a decision as to what to do.

I knwo that i would have been better going onto the MTX earlier than I did, but I had to get my head round the whole thing of the implications for us etc, so I didn't take it for several years. At least now I get some of my life back!!

best of luck!

daisychain

scattered wrote:

I was put on MTX as soon as I was diagnosed. I was already on etoricoxib (anti-inflam) and steroids, both of which had not got rid of all my inflammation, pain or swelling.

DMARDs are like any drug: they're all a bit hit and miss. I've been through lots of them in my almost 3 years diagnosed. I started on MTX, had an allergic reaction, moved onto sulfasalazine. Sulfa did absolutely nothing, moved onto hydroxychloroquine and leflunomide. Seemed to work for about 6 weeks then stopped, so moved again to hydroxychloroquine, adalimumab (Humira - Anti-TNF), and MTX. Had a worse allergic reaction to MTX, taken off that and put on azothioprine keep everything else the same. The Humira has given me my life back. Throughout all of this I've been on oral steroids, had steroid injections (they only last about 4 weeks for me), occassional anti-inflammatories, pain-killers. Despite this I have damage in my wrists and probably in my knees.

Personally, I would say anti-inflammatories are not enough. They relieve the symptoms of RA but do nothing for the underlying cause. Anti-inflams mask the real problem - a bit like steroids. I'm on a lot of medication and it is thanks to that medication that I can live my life. When I have to come off it, for illness etc, I flare and I flare badly. My disease has never been controlled enough that I can come off steroids. Yes the drugs are scary, yes they have some god awful side-effects but in the balance, I deemed them worth it.

I'm 21. I was dx'd when I was 19, symptoms started at 18. Without my meds I can't live by myself, I'm totally dependant on other people and would have more damage and deformity than I currently have. I have somedays when I feel like an 80 yr old in a 21 yr olds body but those days are getting fewer the more controlled my disease gets. For me, anti-inflams were not enough.

This isn't meant to sound preachy, so I apologise if it does at any point. You should do what you deem right for you. I hope my experiences can aid you in that decision, which ever way you decide.

Hi there, really interested in your experiences, Thanks so much .
It is good to hear some positive points and very encouraging.

Best Wishes, Daisychain

daisychain

Wonkylegs wrote:

I currently take Ibuprofen, MTX injections, folic acid & co-codamol when I need to. (take other stuff :roll: but those are the arthritis ones.)


I have taken some form of NSAID ever since diagnosis. I had a good 3+ years on Diclofenac before I had any stomach problems, and even then i think it was probably stress that aggravated things rather than just the meds. I went through just about ever other type of anti-inflammatory including the newer cox-2 injibitors but had bad reactions to them, or they meddled with my BP stuff.

I have now been back on the ibuprofen for 5 years or maybe more. I am fortunate that I don't seem to need to take stomach protectors (touching every bit of wood I can find as I'm typing that :shock: ) but that is in part because I changed to MTX injections rather than the MTX tablets.

As others have said - anti-inflammatories don't deal with the disease, so although you can feel better, there can be underlying damage being caused, although this varies according to how active your disease is.

I knwo that these days they are pushing the DMARDS earlier to try to stop the damage to joints that the older approach used to result in, but you are the only one who can make a decision as to what to do.

I knwo that i would have been better going onto the MTX earlier than I did, but I had to get my head round the whole thing of the implications for us etc, so I didn't take it for several years. At least now I get some of my life back!!

best of luck!

Hi and Thanks so much for your comments, I am feeling more confident about trying the DMARD , as you say I have to think of the possible joint damage in the long term.It is a comfort to know that others have all the same worries and I am not alone. Arthritis can be very isolating and in my experience it is a much misunderstood condition so I tend to keep things to myself and just get on best I can.
Best Wishes from Daisychain

daisychain

jaspercat wrote:

Hi Daisychain, I used to be Sero-negative but have now been diagnosed as having Severe Reactive RA, I was on Diclofenic for several years they caused bad problems with my stomach and didn't seem to work anyway. As soon as I was diagnosed I was started on DMARDS straight away, I was on Sulpha but had allegic reactions to it, shame as it was working well, now I am MXT injections,

My Rheumy says that DMARDS should be started asap to lessen the speed and severity of which the disease progresses, I have no reason to doubt her as she is a well known professor in the field, I won't take Diclofenic at all now I rely on painkillers when things get too bad, really though you should have discussions with your Rheumy about what to do next, and what their opinions are, hope this helps love Jaspercatxx

Hi Jasper

I do appreciate your kind comments , Thanks so much, I always read your posts.

Kind Regards, Daisychain

redpoppy

hi,i was told the same as jasper,that they need to put you on DMDS to stop the disease from progressing and to stop deformaties in the joints.ive been on 3 different ones over the 18 years ive has arthritis,and NSAI too.ive just had to stop taking the NSAI as i have had so much heartburn and pains in my stomach.i already take losec to help with that.

lisaferguson

Hi
I was diagnosed with S-Neg 2 and half years ago. I'm 39. I was put on Methotrexate but had bad side effects so I was taken off that and put onto Sulphasalasine. When that didn't get the desired result my consultant also put me onto Liflunomide. I don't take steriods anymore but was also taking co-dydramol, tramadol, diclofenac. I was even on morphine patches for a while during a really bad flare up. My arthritis is wide spread in jaw, hands, fingers, feet, toes, ankles, ribs, wrists, back.
I still have a lot of pain so my consultant is applying to the primary care trust for a fairly new type of drug called Anti-TNT. It's in the form of an injection and you get it once a week. You can only go on this if all else fails. I'm still in the process of being assessed for the drug and hopefully will be on it in the next two months and get my life back. Apparantly it's a really good drug. i've been told by my consultant that people have been able to exercise again once they've gone onto this injection. People with S-Neg Arth. are supposed to respond favourably to it.
I'm very sensitive to side effects and although Sulphursalasine is quite mild, I think it reacts to all the pain killers I take, so I can't take Co-dydramol or tramadol anymore. I have to be really careful. My immune system gets run down quite badly every now and again, but the positive reactions for the Dmards far outweighs the negative. If I wasn't on anything at all, I would probably have shot myself by now. This is what my consultant said to me right out the outset. She had to weigh up the positive with the negative because there is always a negative side with these kinds of drugs.
If the positive response outweigh the negative, which in my case it does, then it's a good idea to go on them. I couldn't live without mine.
Someone mentioned about how bad their consultant was. I saw a Rheumo privately a couple of years ago while I was waiting for my NHS one to become available. He wasn't very helpful. After a few tests for carpal-tunnel syndrome (which it wasn't in the end), I was told he didn't know what was wrong with me and possibly would never know. I was horrified.
My NHS consultant is wonderful. Very accessible and very concerned. She actually takes me seriously.
I'm glad I joined the forum. It's good to meet you all. Look forward to more chats.

roczko

Welcome to the forum Lisa.

You'll come across a range of opinions about NHS consultants

Fortunately this site is a great support and there are plenty of shared experiences.

I hope you are successful in your bid for anti-tnf treatment.

Best wishes.

Patrick

woodbon

Hi, I have OA, so my medication experience is'nt the same. DMARDS are not for me. I have taken diclofinac though, some years ago, and without any protection and I had a very bad experience with it. I can no longer take NSAIDs and have codydromol and amatriptylne instead. We are all different and you have to make the decision, but the DMARDs do offer more than pain relief, I believe.

Welcome to the site by the way. Love Sue