Being pulled to different ways.....

[shirlthegirl]

Hiya i know i haven't blogged for a while but i have been reading and keeping myself updated, I'm not in a good place at the moment and am hoping that maybe you can advice me what you think the next best meds maybe apart from the anti drug, as you know my brother has also got RA and has taken most of the drugs and they didn't work for him, he is now on enbrel, he is also in a wheel chair because of all the time it took them to put him on a anti tnf drug, he is telling me to tell them his story that it might help, what do you think? i know that the drugs have changed over the years, but he is saying that doesn't matter all they have done is adding other meds like Hdroxy and that's what they kept doing with him until he was in the state he is in now.... it is just a worry, ...As you know i have had a great medical team around me, but it seems now that i might have to change my meds, I have been increased from 15 to 20 mg about 5 weeks ago and it seems that things have got worse not better over the past few days, it started of with my knees giving me a lot of discomfort (Remember i had a injection in my right one 5 weeks ago) and then i couldn't straighten my elbow which has been fine over the past few months, i have now woke up this morning with a really bad flare in my wrist hands and fingers again after all this time, they have got worse this evening that's why i needed to write to you all, Of course i am only unassuming they will change my meds which i have been on now for 19 weeks What do you think?, I have also had a meeting with my boss and we have decided last week that i will come back for a day to see how i cope, it is only for 2 and a half hours and then this happens, :((( I am not starting back until next week but i can;t see this improving that much, I have my second Rheumy appointment on the 15 May so i suppose i will just have to take more pain killers till then, everyone keeps saying that MTX is the best and works better for many people,so what is the next best one to try? I am on Hydroxy 400mg to plus they increased my Folic aid to everyday because of the side affect which have really improved, It is such a let down when you have waited so long for a meds to work and then you have to start again :((((( Thank you for your advice XXX

[Hidden]

Oh shirl i'm so sorry to hear your news . Can you not push for the enbrell injection? how many dmards have you been on ? i took three and non agreed with me and because My RA was extremely active and had been from the start and i had 3 steroid injections the last one not working as well as others did, they pushed me through for the anti tnfs. Perhaps plead your case and do say about your brothers treatment and how because of delays in treatment he has ended up in a wheelchair. Let them know how this effects you and push for the anti tnfs and keep pushing untill you get it. I agree that when the meds dont work it really knocks you down and you get tired of picking yourself up ready to start all over again. But keep your chin up and fight back about your meds. soft hugs hun take care Lena xxxx

[helixhelix]

Hi there, and sorry that the drugs aren't working for you so far. It will be marvellous when the researchers work out how to tell which drug will work best for each person, but they haven't got there yet so sadly you still have to try them out. I can appreciate that seeing your brother in a wheelchair must frighten the life out of you, but try not to panic too much as it really is very rare that this happens now. And it also depends on how long ago he got RA, as some of the newer drugs have only been around for 10 years and others are even newer.

But certainly tell your rheumy about him, as it's important that they know your family history. And certainly ask about changing meds, as by the time of your appointment you'll have been on it for 6 months and that's enough time to see how effective a drug is for you. But do keep an open mind about which drug you want to try. I know sometimes it seems that the biologics such as the anti-tnfs are the new miracle drugs, but they are not without problems even if less risky than they were first thought to be, and they don't work for everybody either. The important thing is what works for you, and sometimes the traditional ones can be completely brilliant too. It took me well over a year to find a mix that suited me, and I was terrified at times as it all hurt so much, I could hardly move and I couldn't see how I could get better as I thought my joints had been damaged permanently - but they weren't as it was just inflammation, and I did get loads better. Which is not to say you should wait a year of course! Do start nagging to get drugs that work better for you, and maybe see if your appointment can be brought forward, but don't give up hope that things will work for you. And if you're flaring, hope you've got anti-inflammatories as well as pain killers.... take care. Polly

[shirlthegirl in reply to helixhelix]

Thanks Polly, I do feel the same sometimes when i'm in so much pain of what it is doing to my joints each time, It is frighting, I suppose every drug has it risks, and it doesn't help seeing my brother is so much pain and discomfort, I never relished how much pain he was in, well i do know now, not a nice way to find out thou,XXX

[shirlthegirl]

Thank you Lena, I have just woke up in so much pain in my wrist and hand, i really hoped that these days were over feeling this bad, typing is causing me problems but i have my left one which isn't so bad, i didn't full asleep until 330 this morning, i am also on amitriptyline so i took another 10 mg more last nite to help, i am already on 35, i have only been on MTX,

I know there are others but my brother insists they are a waste of time, because everything i am going though he did, it seems that i am going to have to take the full dose of Tramadol today, I have also had 3 injections in my buttocks the first one was in Feb, i also had a injection in my knee 5 week ago, i so now what to get back to work, i have been of since last July as my job is very physical and demanding, it really upsets me knowing that there is a drug out there that could do that for me, Thank you i will push for this on the 15th may, Shirley XXX

[Hidden]

I agree with others that everyone's RA is different and I should think that is true even of brother and sister. I have problems believing in the DMARDs so it came as something of a surprise to me when mtx suddenly started working for me when I got up to 25mg. It has pretty much stopped working now so I started feeling more cynical again. I'm now on Sulphasalzine too and my inflammation has just started to go down a little. I don't have huge faith in it but I don't think that matters - I just keep taking the tablets and if the combo does work I'll be on here shouting about it!

Where I think your brother most definitely has a point is that you don't want to go all round the houses unless your Rheumatologist can put up a very good argument for trying one DMARD after another. I keep Polly's example in mind because I know she is on a combination of 3 DMARDs that work really well for her and that's very encouraging. But trying any more than that without any sign of improvement just looks suspiciously like delaying tactics. I agree with Lena that you should let your Rheumy know that unless you get some relief soon you wish to be considered for anti-tnfs. It's as well to let doctors know that we are very aware of this option and also that we are not prepared to suffer in silence.

I am sorry that you are not in a good place, that you are struggling, I think most of us know how that feels and I wish you well. I hope that the right drug therapy for you comes along soon so that you can get on with your life the way you want to.

Luce x

[Hidden]

I can imagine how distressing and worrying it must be having a brother with such debilitating RA that he is wheechair bound. But as others have said we are all different in the way this disease affects us and the drugs that work for us and I'm sure this does probably apply to family members too. It took me 6 months before flare ups stopped and then a further 3 before my ESR came down but I had Hydroxy added in a year ago because they felt concerned about my liver so didn't want to put me up to 20mgs of MTX. I didn't get proper control until I switched to injectable MTX and then things really did seem to change in that a lot of the stiffness went away and all over tingling and pins and needles all disappeared even though it was the same dose. But 15mg inections = 25 of of tablets so maybe worth asking about this when you see your rheumy next - if other DMARDs aren't mentioned - as they probably will be.

I have just injected my first dose of MTX in four weeks and now off Hydroxy, can't take Sulphasalazine so I really hope it continues to work on it's own or I don't have any serious side effects. It often takes a year or more of tweaking and adding to the mix for people to find they feel much improved, just as Polly has said, so hang in there and try not to worry too much. Are you able to take Naproxen? If so it might be worth asking your GP if you can have some of this (if you aren't already) because I find it really effective for short term use when flaring. Tilda x

[shirlthegirl in reply to Hidden]

Thanks I will mention that to my GP next week and see if she can add Naproxen to help me until i see the rheumy on the 15th May, It's just with my liver going up and down i didn't want to add more meds, but then if they work i should look into it, I will chat with the rheumy and see if they will put me though for the Anti tnf drug, all i can do is ask, Thanks Shirley XX

[Hidden in reply to shirlthegirl]

Sorry I wrote that out all wrong as tired so deleted. Reading what you say to Claire below - I'm concerned that you don't seem to be taking anti-inflammatories just now Shirl? Not sure about this but think Tramadol and Paracetamol may be more likely to affect your liver and do not reduce inflammation in the way that NSAIDs do. Inflammation is the enemy we need to focus on with RA. My GP prescribed Naproxen as an when needed and when I asked about Tramadol or painkillers he said only if I couldn't cope with the pain but not actually needed for getting on top of a flare - only for pain. I am not that bothered by pain and try to avoid drugs if I can - but am really bothered at the thought of damage being done to my joints so recommend you ask about NSAIDs to get flare back down asap. Tilda x

[shirlthegirl in reply to Hidden]

Thanks Tilda, That would be the better option, i never thought of that, I will mention this to my GP Xx

[claireyj]

Shirl so sorry you are in pain and feeling so down Hun ... It really is testing isn't it and your poor brother too .... I am praying other meds will help u lovely and I'm sure your team will look after you and get u sorted , but make sure you explain your family history I'm sure they will ...just sending u huge hugs and lots of love Claire xx

[shirlthegirl in reply to claireyj]

Thanks Claire the pain is a lot better to nite but that could be because i have been taking Tramadol and paracetamol all day, I hope i get a better sleep to nite, i know you all understand what it is like, Take Care XX

[Hidden]

Dear Shirl ,I am sorry to hear you are poorly. im not brill either, think you should mention/ empathise family history as a guide but as we know no two peoples illness is the same, the same with drugs. hugs xx