Biologics, exercise, waiting for consultants.

[avocadothrower1]

Hi, new to the forum. Diagnosed 10 years ago now. Was in remission for many years (MTX dose reduced sulphazalazine stopped) but since September RA back with a vengeance & now muscle weakness too. Since May on MTX injections prior to poss move to biologics. (Though 5 month wait for next appointment with consultant!)

Apologies for list but I'm excited to hear from others...

What are people's experience of biologics?

I hear progressive resistence training is beneficial for RA muscle weakness. Anyone know a PT in Essex/East London who is good with RA patients?

When I finally get to see consultant I will have been in pain for more than a year. Should I make more fuss?

[farm123]

Biologics were my lifesaver. Although I have been through several once I have hit the right one for me they are great. I have far few side effects than with DMARD's. As with DMARD's there is no easy way to find out which will be the one for you. Fortunately the first I tried, Enbrel, worked for me for 7 years then it took some time and changes to find my next successful one, Abatacept. May be worth doing some research on the available ones before your appointment - NRAS or arthritis research websites although your hospital will have their own protocol regarding which order drugs are offered. Some are self inject and others infusion and at various time intervals. To progress onto biologics will also take a few months as to quality you need to have two DAS assessment around a month apart before the hospital approves funding and then time again to arrange deliveries or infusion appointment. Farm

[avocadothrower1 in reply to farm123]

Thank you. It's good to know.

[Chezis21]

Like Farm Biologicals have been a lifesaver for me. Diagnosed 2 years ago the RA went through my entire body within months. After trying the traditional DMRADs I progessed to Enbrel in april 2015, followed by Rituximab October 2015 and now Tocilizumab in May 2016 which is working very well - only had one infusion so far and its a turnaround! The infusions are given 4 weekly.

After being house/bedridden for nearly 2 years I was worried about my fitness level bu tnow in the past two weeks I have been able to walk unaided and cycle - cycling is one of my passions.

I am fortunate in that I dont have to wait for decisions regarding my eligibility or funding as I live in Scotland and NHS here is totally devolved to the Scottish goverment and the rules are different. I can call the specialist nurse anytime and have had calls from the Consultant asking me how am I keeping - inbetween appointments.

Good luck

Chez x

[avocadothrower1 in reply to Chezis21]

Ah yes. We do have a rheumatology nurse system and as I have already had a "severe" DAS score I think I will try to get an earlier consultation if there is no improvement with the switch to MTX injections. Great to hear the bo logics have had such a life improving result for you.

[Matilda7 in reply to Chezis21]

Wow...amazing! Although I now have a consultant who sometimes responds to emails...but has taken me about 8 years and many changes of consultant to find one I get on with.

[Fra22-57]

Have tried Humira,Enbrel + Rituximab and they didn't start working for me Had bad spams n in walking months later n then diagnosed with APS so all biologics were cancelled.dont know why.

Good luck to you thou. l