Bad Days and Discouragement

[Blythegirl]

I'm into month 8 of RA. The MTX still leaves me exhausted but the Humira seems to help.

I'd be delighted but...I'm so tired of dropping things, developing new symptoms and reducing my life to medication management for symptom management. I work FT and own my own business, I'm the main income in our marriage at this point.

I'm struggling not to get depressed but I'm feeling SO exhausted and sad lately, it's a struggle. I'm too young (58) to feel so old. HELP!!!

[dwsurquhart]

One thing I hate about these RA drugs and some doctors who prescribe them. I have had a couple rheumatologists say that tnf alpha drugs such as humira will solve everything. Yet when I ask if there is a test for tnf they say no. Not all ra drugs work for everyone. I was on all the dmards, mtx, sulfa, leflunomide, plaquinil, prednisone. Only one of these that did anything was the prednisone.

The doctor said since I failed all dmards, I could start biologics. I was told unequivocally that Humira was the catch all, even though there was no test for tnf.

I ended up with a very nasty side effect on my hands (little doughnut shape blisters) that got very hard and very painful.

Please ask your doctor what your CRP levels are. If they are high,then there is an excellent chance that your interleukin 6 levels are high. If you were to start taking Actemra (Tocilizumab) you would feel a hell of a lot better. I have been on it 8months now and feel quite good. Still have fatigue, but not near as bad as it was with Humira or the dmards.

I also tried Anakinra (interleukin 1 inhibitor). It is apparently one of the oldest biologics. It did nothing to bring my inflammation down.

I have now been told by the doctors that what they are doing is more trial and error. Please do some research and become informed about your condition, about what your blood work numbers are and what they mean. Ask a lot of informed questions to your medical team. They will respect the fact that you are helping them help you. Look up what drugs work for what conditions etc.

Hope all goes well and you get the proper medication to get your life back on track. Keep your chin up and it is not a bad thing when you need to ask for mental help. I have had to and it helped me immensely.

Cheers

Scott

[LadyL0u]

Aww, I hear ya! Don't know if I can offer any feasible solutions but thought I'd at least let you know you're not alone... It can be an uphill battle sometimes but I think over time you learn to pick up better coping mechanisms which aren't miracle cures but might at least put a smile on your face for 5 mins in between all the misery..

It can all pile up really quickly especially when you feel gubbed all the time, you want to keep going and get through your never-ending 'to do' list but you eventually arrive at the realisation that even though your mind wants you to keep going, your body has other ideas! I don't know whether you can alter your work-flow at all, but changing your routine even slightly, can maybe help you get through the day a bit easier. I don't know about you but I have zero energy as the day goes on so I try to tackle the important stuff at the beginning of the day and also try to pace myself a bit more during the day- ideally I'd prefer to get stuck into a project till it's finished, but I lose energy and concentration much quicker than before I got RA so have had to 'give in' to the idea of takin wee breaks now n again so I can get through more - albeit over a longer time but at least it gets done..

Try n tackle things a wee bit at a time. And don't hold back on asking other folk for help - it's not a weakness, but more of a necessity (when you have RA). Give yourself a 'pat on the back' when you succeed, no matter how small the achievement, it's all good

And getting things off your chest on places like this can help too. Good luck, hope you find your stride again soon