Can't win

[cliffsills]

Hello everyone. Just a short message to ask if this happens to anyone else or is it all in my mind. I'm on a right mix of meds. Methotrexate cimzia sulforsalazine and tramadol to name a few. The thing is I'm now or so I'm told by my wife the most grumpy person she knows. Pain free and grumpy. So I stopped taking all meds. Now I'm not grumpy but can't move my arms. This after 3 days. Is it the meds making me unhappy or my head as I really wish I didn't have to take this stuff. I was before this disease got me one very happy lively person. Now Im in doors most days in a chair that tips me up lays me back. This is no life.

[nomoreheels]

Maybe it would have been prudent to see your GP or Rheumy & try to work out which med was altering your mood. My h has diabetic neuropathy & has tried many meds in an effort to help & one of the many he had trouble with was tramadol. Fortunately he wasn't on it too long before we realised it was mind altering for him, so he reported it to the pain clinic who prescribed it & was instructed to come off it, he didn't do it off his own back as he was aware of the possible consequences in doing so. Of course it may have been another of your meds so if you read the patient information leaflet of each you may recognise symptoms you've experienced & be able to pinpoint just which may have been the culprit. If it is tramadol & you've been taking it for some time you will need to follow a tapering plan but obviously it's to be determined it that was the cause of what your wife describes as grumpiness.

As you're taking no meds at all then I'm sorry but really it's little surprise you're as you are now. This may sound harsh but there's a reason you were on them & doing as you have has put you where you are now, an awful position which could so easily have been avoided. Fortunately it's only recent so if you seek help now maybe things will turn round quickly. You really need to be on something to control your RD, the damage that you're risking being done the longer you stay off your meds is a concern, I don't know if you're aware but it's not only joints that can be effected. But you know your own body & can determine if it's worth it.

I wish you well, seek help to determine what was causing your mood change, I would think otherwise you'll not see any improvement in your position just now.

[woodstar1]

Hi mate, I was diagnosed in May 2014 and went straight onto methotrexate injections and it really really didn't suit me. I became so depressed it was unbelievable, my Mrs and kids couldn't believe the change in me. During the early days I was off and on it and when I was off it my head was back to normal, eventually my rheumatologist agreed that this was the cause of my depression and told me to stop it. That absolutely put me off taking the meds but just recently (this week) started sulfasalazine and really hope that does the trick for me as so far I'm not having any side effects.

I do wonder if us blokes suffer with RA slightly differently than the ladies. I certainly put a load of pressure on myself to carry on being a hands on dad to my 4 girls and can't allow myself to take time off work when I perhaps really should as I am the only earner in our household.

Perhaps speak to your Dr or nurse about the meds and take just put it to them, I'm sure they will understand.

Good luck and hope you feel better soon.

[Ali_H]

Hi Cliff,

Reading through your previous posts I am going to risk suggesting that there is some emotional response to your RA going on for you (and probably your wife as well) and I'll further risk suggesting that you speak to your GP and/or rheumy about your med regime AND any emotional 'fallout' that may be happening for you or ring the NRAS help line to chat to someone about how you feel. I see a therapist once every 3 weeks which helps me to express my sense of loss, anger and frustration around my illness and what it has/is/might take from me.

Sorry if the above is way off the mark and I hope that you'll forgive me if it has offended you.

All the best

Ali

[dtech]

Quite agree with all above posts. And it's nice to see blokes posting as it's usually all ladies! There are so many challenges after being diagnosed with RA, not just physically but mentally as well. I can empathise with woodstar, as I think blokes do try to 'carry on' as we used to before and then it affects our moods when we find we can't. So speak to your rheumy nurse and GP, try to get your RA drugs sorted and try therapy. Not saying you won't have grumpy periods, but hopefully less of them

[cliffsills]

Thanks all for taking time to read and reply. I'm taking on board all the comments you have said. Got an appointment at hospital middle of this month will talk through my meds yet again with the nurse. Been on them now for well over six months and.it seems just of late the mood for me has changed dramatically. 90percent pain free and less happy than when it was unbearable. Still onwards and upwards as they say. Many thanks again. Hope you are all as well as can be expected.

[Jora]

It sounds very drastic, taking yourself off all meds, especially without consultation with your rheumatologist.

I was on Enbrel (injection), Methotrexate, Hydroxychloroquine and Sulfasalazine , plus painkillers and supplements. This arsenal was sort of working ,but I too was very low in spirit. The rheumatologist listened, and took me off the Sulfasalazine which is supposedly known to be a depressant in some people . The pain hasn't increased , but i am definitely less miserable now that I don't take that particular drug. As you will see from reading other posts, intolerance ( and I include a market emotional response here) is a very personal thing

I have another theory which I don't believe is mutually exclusive with the one above. When I'm in physical agony, and every step is a challenge, I just don't have the time or energy to be depressed. Frustrated, maybe,but not deeply depressed. but when the pain is controlled, the underlying depression is revealed. The depression, in my case, includes fear of what lies ahead, and a grieving for what I have lost . A course of counselling,and ongoing meditation have both been very helpful

We all have to find our own way. I really hope you find yours, and I urge you to receive professional hope.

Best wishes

Jo