Spondyloarthropathy pain despite combined treatment

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I'm on sub cut methotrexate (moved to injections 4 weeks ago) having had 3 months on orals. I'm also on Sulphasalazine (started that about 6 weeks ago) and I'm still having back, hip and heel pain..... My hands are also having episodes of pain too (which is new).

I've felt worse since I came off steroids, I was on 15mg daily but trailed off to zero about a month ago.

My Rheumatologist isn't keen on keeping me on steroids, I get why.

Just wondering if anyone has had similar experience....... I'm starting to wonder if I'm heading towards biologics?

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  • Posted

    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! 
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  • Posted

    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

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    • Posted

      Hi Blair,

      Thank you for taking the time to give such an honest, thoughtful and inspiring response......it's much appreciated.

      I think that although I was told I could expect it to take to September and beyond before meds would work, that it would happen sooner. I have for a long time before diagnosis, ignored my back pain, not wanting to accept what I truly knew...... that I am affected with RA as my dad was in my early childhood. However, I am and if I'm honest, I'm frustrated by that and the symptoms...... not least feeling generally rubbish and as you say, it's not clear whether it's disease process or meds.

      I continue to work full-time but am not as 'on it' as I have been, but I'm fortunate that my role combines desk work with being able to move about and do different things.

      There are many lessons there in your response, but the over riding one is of patience........ I'm working on patience 😁. Part of that challenge is the tolerance of my other half and the ignorance of her family....... She gets frustrated by me not being well at the moment (despite my best efforts e.g. taking our 3 kids camping on my own....... mad I know-I paid the price in joint pain and fatigue!!). Her family refer to my 'bad back' and otherwise ignore the fact that I struggle to get up from sitting and hobble around..... I feel that they believe I'm making this up for attention and to get out of doing things they perceive I don't want to do....... which couldn't be further from the truth.

      From your reply, it sounds like I need to give the meds more time, keep my motivation, maintain honesty with my treating team (I just don't want to sound like I'm moaning....... Common sense tells me I'm not), stay active (I'm trying but feel lousy much of the time at the moment) and keep my meds options open....... I'm perhaps concerning myself with the prospect of biologic too soon.

      Thank you - it's helpful and motivating to know that my symptoms and concerns are not unusual and that others have come through the other side.

      Enjoy your cycling and kayaking....... Great to know you've made it back to such interests

      Anthony

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    • Posted

      My story is just me. We are all different. Some people on here suffer terribly and keep going through so much and I can’t speak for them. I can’t imagine guys - I am just speaking for where I am at and I appreciate you sharing your experiences as well. 

      Anthony - don’t be embarrassed about being your own advocate. Sometimes you do need patience, but I am not telling you to be quiet. Don’t worry about letting them understand your issues and pushing your doctor about sharing their thoughts on your options if nothing seems to be happening.

      If you have ignored your symptoms for a while I hope they are also taking appropriate scans to understand your current state and progression of any damage. The aggressiveness of treatment should meet the level of urgency  of trying to slow or stop further injury.

      I forgot to mention pain relief. I got a blunt message from an experienced rheumatology nurse early on. Take pain relief when you need it, and understand how it works. With some things, you have to maintain regular doses, if you wait until you really “need” it, you’re already behind with what you should have taken. I am no doctor on this and I worry as much as anyone about avoiding harm, but again, its a balance. (For example I started using codeine, and didn’t connect it with the onset of terrible persistent itching. I was taking so many new things, and suffering so many symptoms I had no idea. For months! However I have determined now that codeine makes me itch, so I won’t be taking it again).

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