advice needed

dawn42

hi hoping you can all offer me some advice.im on sulfa 4 times day and was on meth i was having loads side effects so i took the decision to stop.went for my bloods today they werent happy ive stopped nurse went onto say after discussion with consultant (i could hear thru wall)that my ra was highly active and i have alot of inflammation if it isnt got under control then ill end up with damaged joints which is irreversible and disability but it was up to me they wont force me to restart them,they want me to start on 2 tablets increasing every 2 weeks see if it manages control side effects better that way i know the decision lies with me but bit advice would help.nurse says im thinking oof all the negatives that meth is a wonderful drug...but not all drugs suit all.i cant face weight gain,hair loss,sickness et etc i dunno wot to do :roll:

dreamdaisy

Why haven't they suggested injected meth? That would seem like a plan to me. You know that the tablets don't suit you so perhaps the injected form is an option. s the liquid is more powerful than the tablets a smaller dose is the norm. I am on 6 sulph tablets per day (I think it keeps the P part of my PA at bay) and 15ml injected meth. I have to say I am not overly impressed with what they achieve between them but in my case I am sure that's due to too little intervention too late. Meth can be very effective for some, that is true, and it does sound as tho you need to get your RA under control. DD

nanasue

Hello Dawn, I don't know exactly what your history is but I'd just like to let you know I've been on MTX for 5 and half years, I haven't gained weight or lost hair, I did have some feelings of sickness but since I've been on a higher dose (now 20mg) I take half at lunchtime and half after dinner (about 5-6 hours between) and I don't feel sick anymore. I know we are all different in how we tolerate drugs and react to them but perhaps this could help you. I couldn't tolerate the sulpha, it upset my digestive system so perhaps it's the 2 together that's the problem. I can't take leflunomide or hydroxy either so have to rely on MTX alone. They have talked about anti-tnf but I don't really want to go down that road yet. Hope this helps and you can find a solution to your problem.

Sue x

lizzie7ne

Hi,

Yes I would say have they not suggested methotrexate by injection. I took MTX tablets for over 2 years, recently changed to injection and the side effects are greatly reduced.

I understand how you feel about the effects of medication. Before my switch to methotrexate injections I was taking methotrexate tablets once a week and Leflunomide tablets each day, although my RA was reasonably controlled (but not fully) I felt I didnt have a quality of life due to the side effects, to be honest I think it was the combined effect of the two drugs rather than either one. I took the decision to stop Leflunomide. A new Rheum nurse suggested I switch the MTX tablets to injections and it has made a world of difference. I am currently only taking MTX injections instead of the two drugs. When I stopped the Leflunomide I felt better for a few weeks then deterioted, I then switched to Methotrexate injections from tablets and felt improved. A couple of months down the line, I find I have to pace myself even more than I did when I was on two drugs otherwise RA will flare, and I will be discussing the possibility of adding a second drug at my next appointment. I do understand how you feel, I believe that medication is not working until you feel better, controlling RA but you feeling awful through side effects to me means the drugs are not working. I would have a chat again if you can with your Rheum nurse or Consultant and try to get them to understand just how the side effects are effecting you, I found this the hardest bit, because for so long I was told Well every drug has side effects, I more or less felt I just had to put up with it, but you know everyone is different and drugs effect each individual differently, sometimes I think in a busy Rheum Clinic this is forgotton Good luck

lizzie

dawn42

thanks for your replies.ive never been offered the injectable meth infact its never been talked about.im still on sulfa was 6 per day but i got awful headaches and had drop back to 4.i dont see my consultant till may so its long time to wait and talk it thru,nurse said when id made my decision to ring and let them know as obviously you need monitoring.youre right in what u say lizzie i want to feel better all round not take drugs that make me miserable but the ra is a little improved, i could tell the nurse wanted me to agree strate away to going bk on them but i wanted think it over,i have a job and kids, when im feeling off coz side effects i cant just lie round till they wear off think as lizzie says sometimes clinic doesnt understand how each person is affected we are all different.thanks for your helpxx

dreamdaisy

So ring them as they requested, ask about the injected version and see what they have to say. I think that anything that helps to stave off the long-term damage of RA has to be considered but I do know that it can take a while to find the right sort and combination of drugs to help. I think your consultant etc could be a little more helpful/informative than they currently are - they live with the theory but we have the reality. Sometimes as a patient one has to be pretty forceful in getting one's point across, you have to ensure that they understand what your concerns and worries are. I wish you well. DD

tkachev

What side effects did you suffer from? Did you show no improvement? I suffered from awful sickness but my pain control was much better. Eventually anti-sickness pills have worked for me. I take 1 anti sickness on day before mtx, 1 on the day and 1 after. They work brilliantly for me but have yet to meet anyone else they work for!

Anything is worth a try as you do want to avoid damage to your joints if possible.Of course the decision must be yours and you must not be pushed into anything you feel unhappy or unsure of.
Good luck
Elizabeth

skezier

Hi Dawn,

I was sick on sulfa and mtx separately and the only way for me was like some of the others and use anti-emetics. I have been very sick and also had huge stomach problems on the 25 mtx tablets so at last moved to the injections. been sick on them as well but just now they don't know what is causing it but have given me two lots of anti-emetic 3 x a day.

I have early joint damage and well will carry on taking it cus it will at least slow it down with luck.

talk to them but don't let the side effects put you off cus there are things to help the side effects and in time it might self right for you. Cris x

dawn42

thankyou for all your helpful advice.i havent decided if i want to go on meth again but am giving it alot of thought. thanks again

tillytop

Hello

Just wanted to try to offer a bit of encouragement by saying that, although meth is often the standard approach these days, if you don't feel you can cope with it there are lots of other DMARDS out there so perhaps you could ask the consultant to talk to you about alternatives.

Meth can be a good drug, but doesn't work for/suit everyone and I think the docs are not good at considering overall quality of life and just how debilitating drug side effects can be. I've been there more than once so I really do understand.

I am on meth for the second time now but, first time round, I decided I couldn't cope with it any more after a year or so of feeling truly dreadful. Luckily my consultant agreed that I had given it my best shot and, over the next few years I had various other meds, either on their own or in combination (eg Gold, Hydroxy, Cyclosporine, Leflunomide) and I have to say that, of those, only the Leflunomide gave me any real trouble (felt far sicker on that than on the meth).

I do understand that it is a big decision for you and one which you need to consider carefully, so try, if you can, not to let yourself be backed into a corner re the meth. Maybe have a look at some of the information about the various meds on this site or on the Arthritis Research Campaign website and see if you can talk to your consultant about alternatives.

Really good luck with whatever you decide.

Thinking of you.

Love Tillyxxx

lindalegs

Hi Dawn,

May I just say that I've had RA for 25 years now and when mine began at the age of 27 they didn't use Dmards in the doses they do now. So I have the joint damage, deformed hands, fixed elbow, ankle, wrists and all my other joints badly affected with limited mobility.

I'm not trying to scare you Dawn just trying to warn you that joint damage is a serious thing. I have a lovely life and am very happy with my lot but I'm not as independent as I'd like to be.

I've been taking Mtx for 3 years now and although it won't reverse damage done it does help considerably with stiffness and inflammation. I haven't put on weight or had hair loss.

Please talk to your Rheumy team about a Dmard which can help you.

PhillyCee

Hi,

just joined and saw your message. I was on meth for 3 years and it did nothing for me..... I am now on Enbrel and must admit it worked for me within 3 weeks of starting, the downside is it doesn't seem to be helping anymore. Not sure what the next step will be for me but I recommend Enbrel for anybody that has tried Lefunamide, Methatrexate and the other usual suspects.

Hope this helps. Good luck.x

dawn42

thanks everyone for your help ill give all the thoughts and advice offered serious thought hope everyone is wellxx

skezier

Hi Dawn,

Its hard flower and just wanted to say think it through and also if you can ask about alternatives.I don't know if there are any cus you have to be on mtx and fail in order to go on to the biologicals. I don;t think you can jump straight to them but there are a few modifiers and maybe they could use some of them. Sorry you have all this running around your head and hope you can find something your happy with. Cris x