Biologics & pain relief

[Wyaatch]

I’ve not had much luck with drugs made for RA. With MRX, for example, I got pneumonia and later read about asthma or lung issues being contraindicated for MTX. The RA doc finally confirmed this. Now I’m looking at biologics with higher, more serious side effects possible. What is the trade off? Do all those who started in enbrel or other biologics get quick pain relief, or slow pain relief? Do muscles & stiffness and pain get better tolerated as you take it? I know we are all different but what gave you guys the motivation to want to try ( in spite of dangerous possible side effects) Thanks—

[Shalf]

Hi, I think it's a personal choice (if offered biologics) to weigh up the pros and cons. There are many people more susceptible to infections than others. I don't know if one's level of fitness /health before RA has any influence on how they individually cope with drugs. It's very difficult to know. I personally couldn't tolerate DMARDS and I am on my second biologic. It is helping pain and swollen joints which is a great relief but I am exhausted all the time and gaining weight too. Early days yet to know where I go from here - so to speak. I think most people are in the same boat whatever meds they are taking. There are no guarantees with this disease or treatment.

Best wishes

Suzie x

[Wyaatch in reply to Shalf]

Hi Suzie, Thanks for your thoughts. I’m sure each of us are different and the doc just told me (there’s no magic bullet) which I’ve gathered or we’d all be on that, right! I did ask the doc what would be a likely outcome if I took both his recommended Osteoporosis medicine ( like forteo) and a biologic like Reclast ( he prefers). He didn’t say—I asked does it mean I might be able to stand more or have less pain. I just wanted some reason to motivate me to take it—as we have to try to not focus on the possible side effects. It’s helpful to know you did feel less pain though so that’s ONE possibility I think the doc could say—-thanks/-

[Shalf in reply to Wyaatch]

Yes, a magic bullet - if only! Some doctors/rheumys say some insensitive things. It's hard enough living and FEELING our bodies in crisis everyday without hearing unsympathetic comments.

I am so sorry to read of your pneumonia and can understand your concerns. Make sure before moving onto any other drug that you are vaccinated. Your practice nurse should be able to advise on appropriate vaccines. I got flu, pneumonia and shingles vaccines.

Wishing you all the best.

Suzie x

[Kathies]

I'm now on benepali 3 months in, no physical side effects and it is keeping inflammation down and only one flare up so far. After 8 years on the raft of other things with hair loss, weight loss and nausea and just that feeling of being overwhelmed with chemical stuff, this is an improvement. There is a but, the rheumy asked me how aware I am of my arthritis now and I had to say I can feel more; stiffness especially around my feet, hands and neck in the morning for an hour or so and that fatigue still rolls along every day from mid afternoon and makes everything harder work.

The two years I spent when I was first diagnosed, before the drugs kicked in were so truly awful, I would still try anything to avoid going there again. No idea if that helps you with your decision, good luck.

[wishbone]

I'm one of the unfortunates susceptible to infections that Suzie talks of in her post.

Following serious infections I went 3 years without any proper RA meds. Result being - irreversible joint and RA related lung damage. A catch 22 type decision had to be made, and after talking with three specialists - chest, rheumy and an immunologist, followed by much pondering with head in hands by my good self. I eventually made the decision that rather than risk further joint and lung degradation, which may happen in any case. I'd take my chances with infections and start the same drug as Suzie. We, my rheumy and I, decided to see how I get on with half the recommended dose of baricitinib. Early days yet...I'm about to start my third week and although there's not the big improvement that I experienced with enbrel, it is definitely helping my pain and stiffness, plus no noticeable side effects so far. Can only keep all digits crossed that any infections don't rear their ugly heads.

Not easy I know, especially with doctors like yours, but try to get as much info as you can so you can make an informed decision. Even then I think it's pretty much a toss of a coin.

Hope you start to feel better soon.

Good luck

edit....I try to keep meds to a minimum - just enough to get by.