totally scunnered

BikerAngel

I went to rheumy yesterday in so much pain and his answer was to put me back on leflunomide that I had been on in the past and it never worked for me.
I was on it for a year on it's own and it did nothing and I was bad then he added in methotrexate and it still did nothing and then he upped the methotrexate to 20mg and that started working by which time I had stopped taking the leflunomide and the methotrexate was making me feel better so much so that I managed to get back riding my motorbike again in June/July then the end of Aug I was struck down with another flare that has continued to get worse and worse.
His answer to that was it is due to me coming off the leflunomide in June when I last visited but in fact I told him that I actually came off it beg of the year but they didn't know that so if the flare was due to that then it would have happened when I was at my best prior to this flare. He just did not see my point and the fact I told him I had not had prescription for the drug since last Dec.
In the end I gave up and agreed to go back on it so day 1 today and I just know by the time I go back in 3 month I will not be any better on it. I told my doctor this too and he kinda agreed with me I had not been on it all year and he doubted the flare was due to me coming off it as that would have happened long before it did.
I just feel like crying as this flare has really hit me I can hardly walk and hands/wrists are in pain and can't do much for myself hubby and daughter have to do it all and it is now effecting my relationship and getting me down and makes me cry lots. Sorry for the moan folks but I know there are folk on here that understand as them that don't have this horrid disease don't seem to realise how it can effect you x

barbara12

Oh Tracey
Like you say talking to us lot that understand some of what you are going through , will help a little, what is wrong with these people , why on earth they do not listen, you know your own body and how it reacts to the meds.
If I were you I wouldn't leave it till the next appointment, unless of course you do get some relief, if things are still bad, you try for an emergency appointment
Lets us know how you are doing.

Poppyg1rl

Hi Tracey,
We do understand, it is hard, and you feel rough enough on a flare without relationship issues, and then theres the feeling of guilt because you're not doing what you think you should be, its tough on all sides I know.
My advice would be, give the lef and Mtx a go, if when you see the Rheumy in 3 mths nothing has changed for the better, can you ask about the possibility of starting anti TNF treatment? gentle warning though, With all health budgets being squeezed the pct's are tightening their belts but it's worth a try asking. In the mean time, can you ask your GP for some different pain killers or a referral to a pain clinic? there is help out there Tracey, it's just no one shouts it from the rooftops and we are left to find things out for ourselves, thank goodness for this forum
Re the relationship issues, could you give the helplines a call? their number is at the top of the page, they may be able to help, certainly they are excellent at listening and supporting, I'd urge you to give them a try.
Thinking of you Tracey, and sending gentle hugs your way Xxx

mig

Oh poor you, cant really offer any advise but will be thinking good thoughts for you,it is hard for any one who dont have this bloody thing to understand what we go thru,we on here do and will think good thoughts for you.Mig

frogmorton

Oh tracy

bless you. You sound to have been ignored there :sad:

I bet you are upset, but you will prove it to him if things do not improve next time you see him. Glad you have a GP on your side.

So hard for your OH and daughter to see you suffering (how old is your daughter?)

What l don't understand is why not increase the MTX?? Or even consider trying it injected if it isn't already??

HUGE hugs for you

Love

Toni xx

ritwren

Tracy I really felt for you when I was reading your post. It's so difficult when the Dr does'nt seem to be listening to you. Take heart 'tho, there are still things you might get to help you. As has already been said, you could go back to your GP and explain that you know the meds the Rheumy gave you will take time to work, if they do work but you need help in the meantime. From my experience it's the GP or pain team following referral by GP or nurse specialist, or Physio, who help sort out the actual pain and the Rheumy who sorts out the disease progression if you get my drift. You don't say what you're taking for pain or if you're on anti inflammatories at the moment but there could both help perhaps.
I do hope you get help soon. Meantime try to rest as much as you can as it really can help as well.
Big hugs and good vibes, Rita.

kevinwittering

Go onto Amazon and buy " The New Arthritis Breakthrough ". May help, certainly an interesting read.

dreamdaisy

I think a fair few on here know how you feel. I know that the drugs are not all they are cracked up to be - those who promote them are far too often not the ones who take them. They love the theory, we live with the reality. It can take a while to find the combo that suits you, so please keep searching, it may well be worth your while. I wish you well. DD

CJHunter

Hi Tracey, i am so sorry you are struggling so much at this time. I do not have any advice that will help with the pain.
Ask your doc or phone for an emergency app.
I wouldnt wait 3mths, it is that bad you cant.

Take care hun.
C.xx

cacyhi

Oh Bikerangel - I am so sorry to hear how you r feelin both emotionally and physically and I ve been there many times.

I have no advice on the drugs side of things but I agree with CJ and Ritwren about going back to your gp/hospital if you are not happy.

The one thing i resented about having RA was that it stopped me from being the mother I wanted to be, to a certain extent. When I look back,however, I realise my boys learned about life in a different way to other kids and maybe they are better for that. Maybe I was actually a better mother than I would have been because I've tried that much harder and valued what I could do with and for my kids more. We learned to take care of each other and thats how we still are even now they are grown.

Even though you are limited, remember you still have control over your life, even if at times it doesn't feel like it. Hope things start to improve for you soon

nanasue

Hi Tracey, I know it's hard when you're having a flare, I've just come out of one that lasted 4 months (the longest one I've ever had) and I'm usually good in the summer so it was a bit of a shock for me. I tried to manage at first by being positive but when you get to 3 months it gets harder to cope,trying to deal with constant pain for that lenght of time isn't easy. I was being moody and snapping at people over things I would normally let go, I was tearful and angry and frustrated at my situation. I have been diagnosed 6 years now, most of the time I get on with it the best I can but there are times when it just gets too much, so try not to worry, you are behaving the way most of us do at times, it's normal to feel like this, so don't beat yourself up, you will come through the other side. Having other problems just adds to the load, perhaps if you can get some of the leaflets from here your other half can read them and get some understanding of what you're going through, it's very hard for family and friends, it took ages for mine to get it. Also you could try ringing the helpline for some advice and see your GP to get the pain meds sorted.
Don't forget we're always here for you and we DO understand, so don't worry about having a moan, we all do at times and need support. Let us know how you get on,

Sue x

BikerAngel

Thankyou everyone for your replies, welling up here reading them all just so nice to know others care and understand.

Toni, my daughter is 14 and very capable of doing things ie housework/cooking so I am lucky that way but hate having to put on her as she has exams coming up so really needs to get her head down and study for that as she is doing really well at school and wants to stay on to do highers next year and all her teachers at parents night last night said she is more than capable so I want her to stick in and have the chances her brother had (he is now at uni studying for 7yr architecture course)

Kevinwritten thanks for that I will go and get that book

Rita I am on naproxen 500mg morning and night and have tramadol, dihydracodeine and paracetamol for the pain depending on how bad it is but taking tramadol floors me for whole day so really don't like doing that and last time I took my dihydracodeine I was really sick for some reason and the paracetamol just don't cut it now but going back to the doc Claire I am seeing for my acupuncture next week and gonna see if she can suggest something as I can't sleep now for pain and last time I had diazepam or amotryptoline so might have to go back to them again.

I have physio today as Claire refered me to them at my last acupuncture session when she could see I was struggling to walk.

Thanks again everyone, take care all xx

ritwren

Tracey, I don't think it's safe to take Naproxin and Voltarol at the same time. I'd check this out with your GP, you can have a tablet to protect your stomach when you''re taking any of those anti inflammatories so you could ask your GP about them too to keep the side effects on your stomach to a minimum.
Amitriptyline does help me at night and as you've had it before and it helped, it might be worth getting it again. Nothing beats a good night's sleep in terms of helping you cope, although despite what you say, you seem to be coping brilliantly. Well done you, it's not easy I know.
I have acupuncture when I'm at my worst and honestly feel that it helps so I'm hoping yours helps you too.
You were saying the Dihidrocodine make you sick but there are other pain killers that might not and you could perhaps take an anti sickness tablet to help. Your GP should be able to advise, there are patches available too. Very best of luck. Do let us know how you get on.
Big hugs, Rita.

julie47

Hi Tracy

Sorry you are having such a terrible time at the moment, I just wanted to say that I hope the mixture of leflunomide and meth work for you.

Sending a hug ((((((((((())))))))))
Juliepf x

frogmorton

Tracey

I have 3 girls 2 are 16 and one 14 in Dec - so l know how you feel.

Your daughter will do well and she will have all the chances her brother had. You will not allow her to do too much because you are clearly a sensitive Mum.

Get all the bits and peices you can to help yourself..elastic shoelaces, sock putter-oner-ers and pick up stick etc. Even consider having a bit of help around the house if you can possibly afford it.

Then if she offers - don't say 'no'. Let her be the kind girl she obviously is.

She will do just fine lass

Love

Toni xx

BikerAngel

Toni I have lots of gadgets to help round house OT were very good when they came out and the shoe laces too just bought others as they are more groovy than the nhs ones lol. Just off to physio now to see about walking aids so not sure what I will end up with but something I hope.

Rita the doc prescribed them for me and knew what I was on and said it was ok just not allowed to take ibruprofen with naproxen. I have ones to take if my tummy gets upset with them too can't remember name but so far not needed them as they don't seem to upset my tummy just the dihydracodeine makes me sick sometimes.

ritwren

I do hope things settle down for you soon and you start to be on the up. Did you get any anti sickness tablets to help with the sickness from the pain killers.Gentle hugs, Rita.

BikerAngel

ritwren wrote:

I do hope things settle down for you soon and you start to be on the up. Did you get any anti sickness tablets to help with the sickness from the pain killers.Gentle hugs, Rita.

I have got a prescription today for pain patches so will see how I get on with them not had them before ones that go on for 3 days she said. I got crutches too so that is helping me get around a bit better thanks x

BikerAngel

ritwren wrote:

I do hope things settle down for you soon and you start to be on the up. Did you get any anti sickness tablets to help with the sickness from the pain killers.Gentle hugs, Rita.

I have got a prescription today for pain patches so will see how I get on with them not had them before ones that go on for 3 days she said. I got crutches too so that is helping me get around a bit better thanks x