Does this ever get better?

[skane]

Hi

So, as some may know, I'm fairly new to this PA malarky. Been on Sulf now for 4 months, all was ok until Christmas, and I just went back to square one with it. So, as you do, I carried on, had a steroid injection in my finger, ouch, swelling went down, but finger remains bent and joints still look angry. The pain in my joints slowly became worse, so much so, that driving is difficult so have now been signed off work for two weeks.

Saw the rhuemy nurse yesterday, have raised my Sulf dose from 4 to 6 tablets, and can continue to take codine if needed (always needed). I'm 37 and haven't ruled out having a family, but nurse said if this doesn't work I may have to consider going onto Methotexate. Not sure I want that. She said I'd have to stop 6 months prior to starting a family. What's the point? Be on it, then off......
Had a really bad night last night, pain in most joints, hoping it's because of the cold weather and not another turn for the worse. Consequently spent the day in bed asleep!
I don't really know where I'm going with this....just need to speak to people in the same boat. I guess what I want to know is...does it ever get any better? Or are we always in a state of discomfort/pain?

Help?

 

[flower fairy]

Hi skane, I spent 2 years on sulph with MTX added the second year. didnt find great relief with either of them and was living on diffene and occasional rounds of steroids to try and keep moving but most of my pain was caused by tendonitis and tensynovitis and it does'nt respond to traditional dmards but the new biological therapies are excellent for this and that was proved in my case cos going on humira has worked for me, still on MTX though.

[skane]

Thanks flowerfairy, I'll read into that. See the rheumy nurse in four weeks, maybe I'll discuss other options with her then.

 

[smose]

the short answer is no but I don't want to sound negative because it isn't constant. You will find you have good and bad patches and with the right outlook and meds you should be able to control your pain and symptoms.

Over the last year I have made a lot of changes in my life and have slowed down considerably which is helping my PA - I left work in the summer and am now at Uni but I can take more time for me now. I still enjoy exercise - we go walking most weekends and i swim at least once a week - I just know I need to build in rests as well.

As FF has said anti tnfs seem to be the gold standard of treatment for most - I have just started Golimumab with very good initial results. But to be put on them you have to have tried and failed with two other dmards and you also can't take them if pregnant or breastfeeding so I think you really seriously need to think about starting a family sooner rather than later.

Ask to see an occupational therapist who can give you splints to protect your hands and wrists and help aleviate the pain. and if your feet are bad ask to see a podiatrist who can make you orthotic innersoles. I would also recomend getting a tens machine too - natural pain releif which is highly effective (and if you do have a baby can be used during labour!)

[moanalot]

Hi, Unfortunately, for some of us the answer is NO and for some YES. It just depends on what you are served with I'm afraid. On the pain side you should ask your GP for stronger meds to control the pain. Regarding the doctors, its a roller coaster and constant battle to get through the system.

[skane]

Thanks all, some really good advice there.
So pleased I found this site, I don't know what I'd be like without it?!

The extra dose of Sulph seems to be working, all be it slowly, but it's working! Pain isn't as severe, and I'm taking painkillers on a regular basis, as per instructed by the rheumy nurse. I was going to go swimming today, first day in ages that I felt I could manage it, but have decided not to because of the snow. One baby step at a time, that's what I've had to learn through all this...patience and listening to my body. Before I'd push and push to get things done. May be that's why I have this? To learn to go slowly, take time, don't rush? I don't know?!

xxx 

[smose]

Before I'd push and push to get things done. May be that's why I have this? To learn to go slowly, take time, don't rush? I don't know?!

xxx 

Before I got PA that was definately me - now I take things much slower and think i apreciate life more.