Spondyloarthropathy pain despite combined treatment

Hi Anthony, I suspect you might be right. Steroids are a very effective anti inflammatory (I’ve had a few and still on them) but not good long term.  I’m taking them for my lungs but my joints also get the benefit. I keep trying to get them down. I’m also on a biologic which is good.  Just not sure how much is due to my steroid and how much to my biologic.  Hey ho! 

Hi Anthony.

You are getting these drugs because there is a good chance your body will respond, but it may take some time, which is not pleasant for you to have to go through. Your doctors will want to take the course for you that is safest, most sustainable, and that makes the most of the treatment opportunities that will help you now and give you the best options into the future. If there is a good response to DMARDs, that is the best first option and leaves other to try, should the response change later. The sooner those first options you abandon, the fewer options remain... It is very hard to have a sense of when to discard patience and push ahead to new options when one has to suffer through that time of waiting for a response. 

I have had RA since 2016. I was in a terrible state following onset, with pain and sensitivity from fingers through all joints to shoulders, and toes up through everything to the hips. Initially I took prednisolone for just a few months, and was given DMARDs starting with Hydroxychloroquine, then adding methotrexate, then also sulfasalazine. My response appeared slow, to me  Like you I wondered if I would be moved to biologics. I could not continue with sulfasalazine due to nausea. However a switch from oral to subcutaneous methotrexate saw a reduction in unpleasant side effects and gradual improvement of my RA. 

The response took time. Many months of patient persistence. I cannot say this was easy, I had issues with a number of joints that took longer to settle down than the rest. For example, I had a bursitis beneath my right first metatarsal and that took a year to settle, for which I needed an orthotic and constantly wore spongy soled running shoes. Pain persisted in my wrists, thumb and some finger joints and the palm surfaces of my fingers and hands were sensitive, and I used forearm supports for typing for at least a year into these DMARDs. My mental clarity was badly affected for a long period, either due to the disease, the drugs, sleep interruption from pain and anxiety, or probably all of these. My abilities at my job were badly impacted.  

I took very seriously the advice to try to find exercise I could tolerate, so through those bad times I took up aquajogging. That low-impact worked for me, and I pushed myself quite hard when I was able to.

Dry eyes persisted from onset and still bother me so that now and then I use eye drops.

I am around the 2 year mark having RA. I still take daily oral Hydroxychloroquine and weekly 20mg methotrexate injections. Fatigue, a loss of stamina and a very depressed mental response to that experience was a serious issue for me from onset. I was previously used to being quite active, including being a volunteer firefighter, though I never did any organised “fitness” activities, just fun stuff like biking and kayaking. My capacity for those disappeared. 

However!!! Despite that tale of woe, I have finally regained “normal” level of energy.

I am now for the first time in my life (I’m 52) a devoted gym-goer. When I first tried this approach I just couldn’t take the pressure of anything weight related - that was when I reverted to the pool exercise. 

I still have odd times when my hands or feet are sensitive but not so bad. 

I could get by with normal bike hand-grips, but I have ergonomic handlebar grips on my bike now. I thought I might never paddle a kayak again, but I can do that again now (with some awareness of my left thumb joint). I wear normal shoes again. The bursitis recovered over a long time. 

So all this is to say, for me, my improvement hasn’t required a progression to different drugs yet. It did take a period of adjustment to have patience with how long it takes for drugs to be effective, and for me, to keep an attitude of building my capacity to cope with future flares through building strength and protecting myself when things are not so good.

My attitude has not necessarily been consistently patient with the medical advice. I have once changed rheumatologists, to see if I could get “better” advice. I am not convinced that was necessarily what I got, but I have learned you need to be an active advocate for your own health and you should push for wider consultation when you are the one at risk. I no longer see my “old” family doctor as I feel he was not responsive to the onset of my RA. 

Sorry for the novel Anthony. Try to stay optimistic. Take notes on how you feel. Share your thoughts and concerns with your healthcare professionals. They rely on you to give you informed advice. Best wishes for your way through this. 

Blair