feeling rubbish and missing mtx

salamander

Hi everyone, haven't been on here for a while as been away. Came back with a vile cold that has turned into a chest infection. On antibiotics but they haven't kicked in yet. I feel miserable and my trachea feels raw.

Next week will be the third week without mtx. I am now on injections but have only had one. Does anyone have experience of being off it for 3 weeks and what that does to your joints? Was so bad before I went away I had a depo injection which made me fit enough to get on the train but already my joints are painful again. Ankles, knee and wrists. Seems the nurses at the hospital think the mtx isn't working well for me and I need to go up. She said she could give me another depo injection next week - isn't it a bit unusual to have them 3 weeks apart?

I also got turned down for my BB. They said I needed a letter with my diagnosis on but they turned it down when I offered it! I was rushed through the assessment at high speed. It was v humiliating and now I've got to start all over again.

Not much positive news at the moment. After being with my sister for two weeks who did lots for me I am shocked at how difficult day to day stuff is. And angry about the BB. It would really help me.

Apologies for being so negative. I suppose I could count a day in bed reading as a positive - very rarely get to do it!

barbara12

Oh Sally
How I wish I could help, but dont you apoligise for moaning on here, you have so much going on, you need to talk to someone.
I really hope things improve very soon for you, could I ask why they stopped mtx.
Sending you loads of hugs (((((()))))
Love
Barbara xx

salamander

Thanks!
Lynn, am resting and am sure things will feel more positive in a few days. It's just been one thing after another with me. Infection after infection and it's hard to keep positive. I've only done one injection and that was in the hospital so have slightly lost my nerve. The rheumy nurse was great though and said I could go in again when I am well and do it with her around. The positive thing is that I think I've got rid of the miserable nurse I had who was very patronising and hard to talk too - I 'transferred' myself over when I started injections, using that as an excuse to go with the infusion unit where they are much friendlier - though I hear misery guts works there sometimes too but think my care will be transferred officially in a few weeks.

Hi Barbara, thanks for your message. I didn't take the Mtx last week as my niece had a very nasty virus (which I've got plus some) and didn't want to make myself vulnerable. Also on hols so wanted to feel better - nurses said ok to miss. Missed Monday as ill and next week as will still be on antibiotics. They want to put it up next time. Just hope it works. I feel so dragged down by the constant exhaustion and grotty joints. My GP said I had to lower my expectations
Well, I don't see how they can go lower really as nothing seems to be working for me. But thanks for the support, need it right now.
tc
xx

marion1952

Hello Salamander

Really sorry to hear you're having such a rough time at the moment. I'm afraid the longest I've been without Mtx is one week, so I can't advise you about that.

I just wanted to say hope you pick up soon.

Marion

Wonkylegs

HI Salamander

sorry to hear that you, too, are missing your MTX

Today I missed my third injection, and next week looks unlikely too. :roll: LIke you I am on antibiotics, and the two are not a good combo - at least knowing that I'm giving my body a better chance to fight the infection helps me deal with it a bit, but it is tough there is no doubt.

I am lucky because I am still carrying on taking the Leflunomide which I also take .... so for me this time the loss of the MTX is not as great as it could have been. But, I am more tired, need to rest more, and can't do as much as I want or would like. That is that .... and knowing and accepting that goes a long way to being able to get through it for me. IT has taken me some time to get to that point though - so don't expect too much of yourself too soon will you?

Last year I missed 6 weeks of injections in a row, and that did take quite a time to get over, but then 6 weeks of infections took it out of me too ..... so there is no wonder. Hopefully this break will be shorter.

I hope that by giving your body the space to recover you will soon be able to be back on your MTX and feeling the benefit of it.

hang in there!
WOnky

salamander

Thanks Marion and Wonky

Sorry to hear you are in the same position as me W. It is difficult to accept limitations but I feel so rough I don't want to do anything much. They may give me another steroid injection to cover me but I have had nothing but infections since been on it and it's not even working!! Lovely to talk to people in the same position otherwise feel so isolated. You take care of yourself too Wonky! Intend to go back to bed and sleep and read a bit today
xx

dreamdaisy

This must be so frustrating if meth is effective for you. I know that it does compromise the immune system and the risk of infection is higher, then it takes longer for it to clear as the immune system has to be fired up to fight it, and so the roundabout goes on. You will get better, the infections will go, and then you can start it again. Arthritis is bad enough, without all these unnecessary complications. Take care and I hope you feel better soon. DD

dorcas

Hi Sally

sorry to read you're going through such a bad patch. :?

I had to stop Mtx injections for 4 weeks when I had a wound infection post op.

I have to say I didn't notice much difference with stopping for 4 weeks....but I think that's because Mtx on it's own doesn't control my PA. I was also on 6 weekly IM steroids March - August while waiting to start on an ant tnf so I think that's what carried me through.

If the rheummy's don't think that Mtx on it's own is working... are they suggesting anything additional? maybe you need a review of all your meds to look afresh at treatment options?

I hope that the chest infection lifts soon and that you begin to feel a bit better. keep posting Sally so's we can listen and support you.

Iris x

ps... I know I'm probably being dense but what is BB. :oops:

salamander

Thanks DD and Iris,

Like you, Iris, the mtx isn't working very well and I am reliant on both oral steroids and injections. The new nurses I've got have said I have to push my consultant to try other things. He did say if I keep getting chest infections he would take me off it. Maybe this bout will do that.
I feel really rough today and fed up too.

BB is a blue badge!! It would have helped me a lot but they want a consultant's letter (might ask the nurse to ask him) even though I offered letters. To be honest, I don't think they think I am bad enough because I can still walk - even though it is mostly very painful and I am quite limited. I try hard not to hobble and stand up straight as am mindful of knock on effect if using sticks etc. Have been told not to in fact. I find it really hard to get about and turn down lots of things as I can't park the car (or always afford to - I live in London!) I have a couple of useful people I can ring to ask for help getting it but am loth to.

This blooming illness feels so unrelenting and thanks for your support everyone.
xx

dorcas

duhh!!! BB= Blue Badge...of course!.. what an idiot I am.

Do you get DLA Sally?if not, maybe you should think about applying? your doc or rheummy nurse can complete the medical bit....

might make a difference to you and make applying for the BB much more straight forward.

Iris x

salamander

Yes, that's probably why I didn't get it. Will talk to my doc about it.
Thanks.
xx

dorcas

Morning Sally.... hope you are feeling a bit better today?


good luck with the DLA application..... CAB are good at filling these out so might be worth giving them a call and making an appointment.

let us know how you are?

Iris x

salamander

hi Iris, thanks for asking. I'm still feeling really rough but think there is a slight improvement this morning. Rang the rheumy nurse as I think she wants to put my steroids up again. Feels like I'm on a merry-go-round!
Thanks for the support

skezier

Hi Sally,

I am sorry your going through it just now. Also sorry I am late.

I was off mtx (tablets) for 2weeks but my joints are not under control to begin with so it made no difference. have gone back o it this week at a higher dose than I was on when I came off and already I am coughing again. Mind I do smoke so kinda ask for it eh?

I really hope things get easier for you soon and nice to see you Cris x

salamander

Hi Cris, thanks for your message. Helps to have a bit of support, especially when you live on your own as I do. I spoke to the rheumy nurse this morning and she is going to write a letter about BB, says I should have it. I will go back onto my mtx injections when I'm over this illness. This is my fourth day in bed - v unusual to keep me down for that long!
How are you doing these days? Not struggling too much I hope.
love S
xx

skezier

Hi Sally,

now what you mean cus I am alone with just the employers and it can be hard eh? I have had a bit of a rough patch but its getting a bit easier now and I don't seem to be falling asleep all over the place

MTX is a good drug but it also whacks your immune system so if you get ill it means you feel worse and take longer to recover. You stay resting, stay at a static temperature and with luck you will feel so much better soon. Sending you a ((( ))) and a cuppa. Luv Cris xx

dorcas

Hi Sally

glad your rheummy nurse is being so helpful and fingers crossed that her letter helps you to get the BB.

this is a bad patch for you Sally but if you need more days in bed.. and that helps then really that's all you can do.... although it feels like an age for you I'm sure. x

Do you have anyone calling in? how are you managing with meals etc?

Wish was closer to help.


Irisx

salamander

Thanks Cris and Iris (sorry you've been through a bad patch, hope things are looking up for you a bit)
I know you are both right that I need to rest more and not go out so have done a big internet food shop for tomorrow. Managed to make a big pot of soup yesterday so have been eating that.Got some friends bringing food on Monday! I don't think most of them understand very well how things are for me - maybe I should ask for more help.
I wished you were a bit closer too Iris but your support on here is very helpful.
xx

deborahjane

i know what you mean,i was of them for 6 weeks when i had chest infection,and my joints starting to get really bad,i didn,t really want to go back on them cause of side effects,but doc said as it was working i should been back on them for 8 weeks and my joints are really good,but now i keep itching,and been to docs today about mole that turned purple,he thinks its a bleed from methx.got blood test next week,and got to go back in 2 weeks see if there is any change in the mole,any way hope you feel better soon,

deborahjane

i know what you mean,i was of them for 6 weeks when i had chest infection,and my joints starting to get really bad,i didn,t really want to go back on them cause of side effects,but doc said as it was working i should been back on them for 8 weeks and my joints are really good,but now i keep itching,and been to docs today about mole that turned purple,he thinks its a bleed from methx.got blood test next week,and got to go back in 2 weeks see if there is any change in the mole,any way hope you feel better soon,

ironic

Hi Sally,
Glad you have organized a food run Do hope you got some treats for yourself.
Awful when your so poorly as you do not really feel up to cooking but you need the strength to fight the infection.
Hope your visitors bring loads of goodies with them!

Is the book a good read?

Lv, Ix

salamander

Thanks everyone. I finally gave in and called the out of hours doc this evening and am waiting for them to come. My chest feels really bad as if I can't breathe. Just dawned on me it might be asthma which I only get when I've got a cold. Also, doc said over the phone it might be the arthritis in my chest so they want to see me and maybe I'll have another antibiotic. Haven't felt this ill in ages. I've also rung & texted a few friends and told them I'm ill so expect will hear from some tomorrow. I know they will help, they always do!

I know what you mean about not wanting to go back on mtx DJ. I feel the same if it is going to make me this ill. Will talk to consultant when I'm better.

Yes, Ironic, have ordered some treats - plenty of ice cream and cake!

Thanks for checking up Lynn, much appreciated

You are a fantastic lot!
xx

salamander

p.s. the book is good - What I loved by Siri Hustvedt. Wouldn't have gone for it normally but it is book group reading for September. Also can recommend Wolf Hall by Hilary Mantel - fantastic book!

dorcas

Sally

I am glad you'e phoned out of hours and I hope that the doc is with you now.....

Hoping too that you get more appropriate treatment and that your chest eases. :roll: you were wise to phone Sally, Asthma is unpredictable and can be serious.... but you'll know that.
I'm rambling because I'm worried about you. sorry!

with you in spirit if not in the flesh.

(((hugs))) and positive vibes

Iris x

ps... good that you phoned your friends. xx

salamander

Thanks Iris, doc came and haven't got pneumonia (phew!) but have got problem (rattling sound apparently) in one lung so she's changed my antibiotics. Chest pain is prob arthritis and coughing. Actually, I've seen her before in the emergency surgery and she's a very lovely woman so it was nice to see a familiar face! She wears the most enormous high heels. I don't know how she manages to totter about people's houses in them! I would probably have fallen down the steps to my place if I were wearing shoes that high - at least 4" maybe more - she is very glam!

Already had offers of help from friends so my SOS has been effective. Am going to bed and hope to feel better in the morning. Thanks so much for your support (all of you) - can't tell you the difference it has made. It is scary when you are on your own.
xx

skezier

Hi Sally,

You take care and you must rest up and stay at a constant temperature. Lets us know how you get on please when you feel up to it. Hoping you feel much better tomorrow. (((( )))) Cris xx