A bit of a set back i hope:(((((

Hiya I hope you have all had a pain free day, not like me!! Since i woke up this morning i have been getting a lot of pain in my hands arms, fingers and both my knee and it has been traveling down to my ankles, i haven't had this pain for along time ,i was hoping it was going to be a distance memory, As you are all aware i had my last steroid injection over 4 weeks ago, and i have been having them for the last 3 months, I didn't feel that the injection had helped me that much, i have also been able to cut down on my painkillers, but today i have had to increase them again, i am feeling really fed up now, i think i am going to loss my patients with this rotten disease , do you think i should try and get another one, or just give it a few days to see if there is any change, i also have a funeral on Friday, it is sods law isn't it, sorry i am having one of them days, just want to moan, i'm now on my 9th week of 15mg of MTX and 400gm of hydroxy ,

Thanks XX

22 Replies

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  • Your not alone in being fed up. I have seen my dr today and he has told me there is nothing more he caan give me and i am on all the drugs used for treating me. That deflated me no end i can tell you. I have been having a pity party since. All i can see is a life of pain. I can understand if anyone wanted to take their life,i couldn't do that mind you thank goodness. We will have to organise a day of just being pitiful and we can all have a good old moan all at once.

    Thats my moan over with,sorry to hear that you have a funeral to go to friday. I hope it isn't someone really close to you. You keep your chin up my friend. xxxx

  • Sylvi thank you for you reply, It is really sad to hear your bad news, some times it makes me wonder,what the hell am I moaning about!! My Brother is also in the same situation, as you know i have said before that he is now in a wheel chair and finds it very hard, i also know he has had them thought before to, the funeral is for my cousin who died from a attack. so that's a funeral i need to attend, I feeling a bit better today, I have just had to increase my pain killers, also your message has really helped me to relies that i am better of than some people, Thank you for your caring message,

    Take Care xx

  • Shirl we are all in this together,was your cousin murdered or is an attack of another kind,so if i might upset you with that question as i don't want to upset you any more. \\ref; the funeral, wrap up warm and made sure you have plenty of clothes on so you don't freeze. If you have some wheat bags give them a zing in your microwave just as your leaving and they will help your joints as well.

    I am not too bad in myself today even though my points ache, i am not where i was yesterday thank goodness. My love to you and i hope friday goes without too much trouble.xx

  • Sorry Sylvi, head all over the place ,she had a heart attack, she was only 61 but had been though a lot since her husband died a few years ago, i think she just gave up to be honest, thanks Xx

  • That i can understand as after my dad died dec 1999 my mum gave up and died aug 15 2000. The worst part for me was that i predicted how and when she was going to die and i was only out by 10days. So i fully understand what your going through even though it is your cousin the pain is still the same.xxxx

  • Think the steroid may have worn off? x this illness trys a saint spent this morning snapping my chaps head off x

  • So sorry you're having a tough time. I was diagnosed in early sept last year and honestly feel that I seem to take 4 steps forward and then just as I'm thinking I'm cracking this disease I end up taking 3 steps back and feel so disappointed! I've had a good talk to myself, coupled with the support I've had from this site-I don't always comment as I read the blogs on my phone mainly which is a nightmare to reply on but I have learnt SO much from everyone and I understand that sadly medication,patience and being kind to myself is really the only way forward. There's no quick fix, its a rollercoaster but I just hope that we can all find a plateau which gives us a quality of life enough of the time to outweigh the lows. It sounds to me that the steroids have been doing a good job of masking your symptoms. I've gradually being trying to reduce my oral steroid dose -believe me just a drop of 1mg makes a huge difference to me but it does settle after a few days. I'm now on 25mg injectable MTX, 200mg Hydroxy, 4/week of 5mg folic and 3mg steroid and although I'm feeling sick with the high mtx dose, I can feel an improvement in my joints-for a few days now! I'd say I'm keeping fingers crossed but its not a good thought for us is it!

    So..here's hoping your pain will improve v soon-maybe it's worth checking in tom with your Rheumy nurse so any suggestions may help before the funeral-take care Ali x

  • Hiya you were diagnosed about the same time as me, Your so right it has been a right roller coast, the great thing is i have got a great medical team around me,

    I was feeling really down yesterday, I have now given up smoking for nearly 4 weeks and believe me i was looking for one just to calm me down, When i woke up this morning i was so glad that i had the strength not to have one, I am feeling a bit better today, so i will see how things go or i will have to ring my Rheumy nurse, thanks for your Message XX

  • I also had a steroid injection in my backside about 4 weeks ago & can't see what it's done for me apart from improving my chronic anaemia. I'm thinking I won't bother with another one unless I get pain. Am I right in thinking you take mtx only? If so, maybe your Rheumy will be thinking about adding in another DMARD? Oh & just like Summer have been a right b*tch to husband on phone today - it's this illness I'm afraid & maybe the cold weather has just gone on too long - come spring we'll all be feeling so much better (I hope!). The good thing about 'one of them days' is that they are usually followed by a much better one!

    Luce xx

  • Just seen that you are on hydroxy too. Sorry for not checking earlier & hope that at the funeral the solemnity of the occasion will overshadow your pain so that it's easier to relate to others there. x

  • Thank you for your best wishes,I have appointment next week to see my GP, will see what she has to say about another injection, I have also received a letter this morning giving me a full report on my condition so far, it mentions that the rhemy nurse has mentioned about me having another injection, Take Care Xx

  • As Summer says it sounds like the steroid injection has been working better than you realised. Roll on Spring I say. Tilda xx

  • PS I was still flaring at your stage - it's still early days for the drugs to have fully worked Shirley.

  • I know Tilda, You just get them days when things just get right on top of you, I am missing being at work and seeing my friends to, i have received a letter this morning, hope they will give me a injection when i go on the 5th March for my appointment in oxford.

    Thanks again xx

  • I personally think that you should try and pace those steroid shots Shirl but its entirely your call. I can't take them they make me bipolar but also I think you might not be getting a true perspective on your disease and you need that if you're going to get back to work I believe? Don't mind me though I'm just full of the cold! Xxx

  • I agree, This is why i am so concerned about returning to work, i will have good chat with the rheumy team on the 5th, thanks xx

  • Hi Shirl me the same:( ...Have been doing ok just odd days of sore joints but Friday I got up and literally couldn't walk ... I was terrified it was mainly my right hip which triggered pain in my thigh from a previous fracture! I was in agony and everything started to flare then Saturday evening I had a sore throat and now am completely full of cold etc ...went to my GP who signed me off straight away. Obviously a virus that my body (RA) reacted to and now left me with this virus...I guess this is wot it's like wasn't sure wot was happening Friday as still very new to all this ....wondering whether a similar thing might happen to you and that's why u have this flare maybe you'll get a cold or something :( ....hope you feel better soon x

  • I don't feel as if i have the flu, but it is hard to know because you do get flu like systems, But i have had the flu jab, so i am hoping i am not going to get it as bad as i did at Christmas, hope you are feeling better soon x

  • Hi Shirl, sorry to hear you're not feeling too good.

    Like others have said, it is still pretty early on in your MTX treatment. I begun mine last May and although I did feel slight improvements over the weeks it wasn't until about 6 months that I really started to feel the benefits. I'm afraid patience is what we all have to force ourselves to accept with this treatment. But hang on in there, it really does get better. I'm now feeling pretty good on 15mg a week and hardly any anti-imflamms of other pain killers to speak of. Looking back to this time last year when I was taking 3 anti inflamms a day + assorted pain killers and still exhausted and hobbling around, I can hardly believe the difference.

    Hope you're feeling better soon.

    Caroline.

  • Thank you Caroline, it does help to hear such a positive message, Know wonder us poor sufferers get so depressed with this rotten disease, when it is such a long roller coaster XX

  • If you have already had steroid shots for the last three months, I'd be a bit wary about having another right away. They are not good drugs to be taking long term, and I know my GP has a kind of rule that the maximum she is comfortable giving would be a total of three months worth in a year. I think I'd be inclined to make sure the rheumatologist knows very clearly that you aren't getting good enough control of your disease yet, if its still causing that much pain, and see what they say about adjusting your DMARD meds - in the long run its going to be the DMARDs that do the good, not steroids (that have a very temporary effect as well as the potential for nasty long term damage)

  • I think this could be the best way to go, when i went to see my GP 2 weeks, ago, she seemed a bit surprised that they were talking about giving me another injection,

    I will have to raise my concerns with her next week before i go in March and see what she think could be the best way to go,

    Thanks Shirley XX

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