New to the forum, battling RA and medications

sulkycat

Hello - I am so glad to have taken the plunge and joined this forum!
Diagnosed with RA in April, have had to leave my job (teacher of excluded teens, could no longer restrain them safely) and struggling with all aspects of this disease. I am 45, live alone and it's a challenge.
The pain is only one part of it - the lifestyle changes are hard enough, throw in reactions to medication etc. I also have ME and seem to spend the majority of my time sitting / slumping!
I have come off MTX injections as they were making me so ill and have started sulfasalazine, but am utterly wiped out after one week on them, light headed, dizzy and generally feel weird.Am on slow release Tramadol and paracetamol for pain as diclofenac gave me an ulcer, also stopped other tablets after reactions.

The staff at hospital are great, I am lucky to have the top medical bods here, even the whole DLA / benefits system has been surprisingly supportive, my family are fabulous and the friends who haven't been scared away by illness are wonderful - but by hell this is hard. Despite being exhausted I don't sleep well except for Zopiclone nights.

Any support hugely appreciated!

valval

welcome i started it three weeks ago did they build you up slowly ?? or did they throw you straight into full dose. it takes a while to get used to it made me feel light headed and sick but am doing so much better now. i am sure life will improve soon it can be so hard finding right meds but at least you have a good group of people looking after you good luck val

sulkycat

Thank you for the speedy reply!
They increased my injections of MTX to 25mg very quickly after the tablets and the steroids didn't help, but are taking it slowly with the sulfa. Two weeks on one a day then two weeks two a day, then see the RA nurse to see how things are going.

stickywicket

Hello sulkycat. I’m glad you’ve ‘taken the plunge’ too though it’s a shame you’ve had too, especially as you already have M.E.

I’m glad you have good people around you – both medics and family – as that’s a huge help. Friends? Well, the good ones who are still around are invaluable: the ones who scarpered you’re better without.

It must seem that your life is changing at an alarming pace but they will, eventually, get you settled on some meds that work which don’t give you worrying side effects. I’m afraid it’s trial and error. However, sulfasalazine works for a lot of people on here although, it seems (I’m on meth) that the first few weeks can be tough. Persevering seems to bring its own reward.

We all tread a tightrope between keeping friends and family well-informed on the one hand and, on the other, not overburdening them with stuff they can do nothing about. That’s where the forum comes into its own. Whenever you need to talk about anything, or ask any questions, there’ll always be people here who understand where you’re coming from and are willing to try to help. All the best.

dibdab

Hi Sulky cat,
Sorry to hear that you're having a tough time-RA is certainly life changing. Like you I teach, and am wondering how much longer I can stick with it. It's good to know that your family are supportive-they really do keep us going, but no-one who hasn't experienced the unrelenting nature of the disease can really appreciate just how demoralising it is-that's where the forum is so very valuable.
Hang in there with the sulfasalazine, the side effects do settle down, and they help to make life more bearable-have you tried taking them at mealtimes-it can help with the side effects.
Take care of yourself. Blessings
Deb x

dreamdaisy

Hello, I love the name! I would love to stay and have a natter but I am tired and it's time for bed. You are not alone with what you are feeling and experiencing, we have all at one time or another battled ourselves, the disease, the meds, the tiredness, the frustrations, the scariness, the highs and the (seemingly) far more frequent lows: I found the forum and my life changed for the better, without a single doubt. The support here is second to none and I hope you will stay with us. I wish you well. DD

bubbadog

Hi Sulkycat, You are so lucky to have friends who have stayed and surported you! Mine all heard what was wrong and that was the last I heard from them! It's good you have found a good surport system with the hospital, and your family are behind you as well To have had a good relationship with the DLA your very honoured!
I know getting the right Arther meds to make you comfortable can be a complete nightmare, and having to get used to changing your whole life style is so upsetting but your in the right place for surport now.
You will find it so helpful being on the forum and if you have a question don't hesitate to post it on the forum and you will find your answer out from the forum it's lots of fun as well!!

sulkycat

A massive THANK YOU for all the replies.

Another day of utter exhaustion - I think my mood matches the weather today - but I have had my shopping delivered, have built a cosy nest on the settee and plan to put a dvd on and vegetate.

One of the hardest things has been giving myself permission to do nothing! My Gp keeps telling me to listen to my body and rest when it needs to but after a lifetime of work and being busy it's hard to just stop. I am currently about 93 I think ...

dreamdaisy

My ma-in-law is 91, thirty nine years older than me. She moves faster than me, walks better than me, does the stairs better than me, has more stamina than me. The only thing we share is 12 hour days! She rests for twelve hours due to age, I rest due to necessity! You are doing the right thing, sulkycat, enjoy the resting and I hope you feel its benefit. DD

stickywicket

Your GP’s advice is good, sulkycat. Hard to put into practice, but good. We all have to learn to listen to what our bodies are saying to us. (Mine’s usually saying Alistair Cook or, indeed, any other young, fit cricketer but Mr SW won’t let me )

It’s hard if you’re used to being very active. Have you tried keeping a pain diary, so that you know what sets it off where and how long it takes to recover?

Pacing oneself and being sensible are two of the most infuriating aspects of dealing with arthritis. It’s a steep learning curve but you’ll get there. Very occasionally I manage both in the same day.