profound weight and muscle loss etc

pinklurcher

hi i am new on this forum and my husband Jon has been newly diagnosed with RA and he also suffers from celiac disease. we are suffering sooo badly at the moment and we are not coping with the physical changes that are happening to Jon he is suffering from really bad fatigue as well has a completely flat battery and it is now causing him and i extreme anxiety and periods of feeling absolutely hopeless...we cannot see the end of the tunnel...he cannot start any med at the mo due to raised liver enzymes ..he does not metabolise drugs like other people anything can make him feel bad..he recently(last Nov) had a steroid injection which is long acting and it seems everything has gone down hill since...prior to this happening he spent 24hrs in hosp following steroid treatment by tablet and he had only had 7 days treatment!!!! :shock: his consultant didn't believe him so gave him the injection saying it would be OK. his liver is stuctually good his heart which has been over 120per min is healthy and he has recently had a chest xray whch is good...the muscle loss and weakness is also making swallowing difficult by the end of the day..what i need to know is are other people experiencing anyof this.sue

helpline_team

Hi Sue
Welcome to the forum. I hope you get lots of help and support from it.
This time of being newly diagnosed and waiting for treatment to work can be one of the most difficult and worrying times as many of our forum users who have been there will tell you.
The extreme fatigue is typical of RA when the body is fighting the inflammation. The muscle and weight loss is not unknown in RA but may also be due to his coeliac disease and, because he has been feeling so ill and been in hospital, may not have been eating as well as usual.
Having more than one medical condition complicates the situation as what works for one can disagree with the other but his medical team will sort this out.
It sounds as if Jon has had a bad time so far but there will be a light at the end of the tunnel. It may be hard to see right now but it is there. You are obviously very supportive to him but look for support for yourself too so you both get through this tough time together.
Sue, we are here on the phone as well if you want to talk to us.
Take care
Val

pinklurcher

thank for your reply is nice to know i can seek advise and help here, only last night in the small hours Jon was sitting on the side of the bed and i was trying to reassure him and he said i don't know if it will get better I'm not sure if it will...this broke my heart...to think my beautiful man is reduced to this I'm tearful as i write ..he has lost so much muscle on his bum he has started to get small pressure sores which we are greasing x4 each day....its a lonely world we live in at the mo and i can honestly say i feel like I'm drowning in it with him. this probably sounds dramatic but i cant help it...sue

helpline_team

Hi Sue
I've sent you a private message.
Val

skezier

Hi Sue,

I so wish I could say something to help you and John but I just wanted to say I am glad you found the forum and they are a really good lot and very supportive as well. The help people here are very good but more than that they are kind and help you as you already know.

The other people here are good at just being there and I know about how lonely illness and conditions can be and how much the folk here have helped me to feel visible and valued so please remember your not alone they are here for you. I so hope you get some help and answers and am leaving you a ((( ))) Cris x

barbara12

Hello Sue and John
Just to say a very big welcome to this really friendly forum.
You will get all the support you need from the people on here.
I do hopr things inprove for John very soon.
You take care
Barbara xx

pinklurcher

thank for kind msg..x