Combination Treatment....... Sort of working

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Hi folks,

Just wanting to see what others experience is of combination Treatment. I've posted a few times since diagnosis earlier this year with inflammatory arthritis, mainly enthesitis in my back, hips, heels and more recently my hands/fingers. Everyone's help, advice and experience is always helpful to me.

I started methotrexate about 6 months ago, tried sulfasalazine without success and so have now move to methotrexate and benapali. I started the benapali about a month ago so aren't expecting that to kick in for a while.

More recently I had my pneumonia immunisation which subsequently triggered a flare up. This left me with increased joint pain and that general feeling of being unwell...... You'll all know that feeling, that general feeling of being unwell, exhausted..... that feeling that's hard to describe but we all know what I mean.

Because of the flare up I took some previous advice on here....... Which was to share with my Rheumy team when I'm unwell and not try to ride things out. I spoke with them and had a steroid depot which did little and so I have been started on a decreasing dose of oral steroids. I'm 5 days into the 20 mg stage of the dosing. Despite the methotrexate, benapali and oral steroids I still have waking joint pain and the same throughout the day as my pain relief wears off. The positive is that the unwellness feeling has improved (bonus!!).

Just wondering if anyone has experience of whether steroids and combination treatment ridding their joint pain, or is this going to remain (albeit reduced)?

Thanks in advance....... and apologies for the long long post..... just thought the detail always helps 😊

Anthony

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  • Posted

    HI Anthony, i can completely relate to all of your problems and have virtually the same diagnosis. I tried the same meds with a lot of side effects and have been injecting once a week with Benapali plus steroid injections once every 6 months, having said that, I having steroids injections every 3. my specialist has tried to reduce it as not good for the bones and heart. just been diagnosed with Osteoporosis too.

    i too have trouble walking every day, if i sit, then can hardly put weight on my feet.

    having said this, iv just dealt with with a bereavement in the family and moved my father into another property with help from my family, must admit i came to a standstill and the usual feeling of flu. I had to rest for 2 days before i felt i could do anything.

    iv realised you have to pace yourself and listen to your body, its hard because if you dont use it you lose it. but so difficult to do when in agony.

    i was also told that if it didnt settle, then i would have to go onto another stronger medication, but reluctant to up it unless really needed.

    i find the Reaumatology nurses are great to talk to, but i cant speak for your team. i do know the Benepali has been such a help, as i was virtually in a wheelchair. it takes time to work, but give it time.

    i hope you have a good xmas. this forum is great for advice and you realise you arnt on your own and thousands suffer with the same problems. Good luck.

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    • Posted

      Hi Linda,

      Thanks for replying, this site is great for sharing experiences of RA...... don't think I've come away once without learning something or having reassurance.

      I'll keep going. I have a great rheumatology team (it's the patient that's the problem 🤣😂..... I'm stubborn, but learning not to be). They listen, advise and act on what I'm telling them..... I've begun to be honest with them more recently as I can't hide my symptoms any more. Good to hear benapali has been so effective for you, I was told it will make a difference but I haven't been convinced as other meds haven't worked...... Your story gives me some hope thank you

      Have a lovely Christmas

      Anthony

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  • Posted

    Hello Anthony

    I feel your pain I was diagnosed 16 years ago. I have been on many combo meds the one constant since 2006 is methotrexate injection

    I have been on sulpasalazine didnt work I have been on many combinations over the last 16 years, have always had early morning pain and stiffness at best it takes 90 min for meds to work enough to enable me to get dressed, I have had many steroid injections to compliment the meds.

    Over time the joints get damaged and I have developed osteoarthritis in a few joints.

    I have found over the years that the desiese morphs at times and although some combination is working there comes a time that it stops and you swap to another

    I am currently on methotrexate injection weekly and golimumab monthly for me this is working and has done for nearly 2 years, however I am still in pain in the mornings however this is not accompanied with the usual hot and swollen joints. Like Linda I agree the specialist nurses are a god send . But keep trying new Drugs when offered the new biological currently being used are good ones if your current one is not working ask about drug trials .that may give you access to something new.

    Unfortunately trial and error is the only way forward.

    Hope this helps and you enjoy your Christmas, pace yourself equal parts rest and play .

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    • Posted

      Hi Jayjay,

      Thank you for your reply too....... This site is fab for replies..... I guess we're all in a similar boat, so know from time to time the frustrations and concerns.

      It's reassuring to know that trial and error is kind of a norm...... I know I'm a novice at this treatment business having just started benapali on top of methotrexate but in needing steroids on top again I did have a moment where I thought 'they'll never believe how ill I feel or the pain I'm in' (given the cocktail of pain meds I'm also on). However, the Rheumy team have been great...... as I've said above, it's the patient that's the difficulty not the care team 🤣😂.

      Pacing myself is something I'm learning to practice...... I preach it a lot but don't heed my own advice 🙄. I have over a week away from work over the Christmas period so plan this time to take it easy

      Have a great Xmas and thanks again for replying 😊

      Anthony

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  • Posted

    Hi I am on Benapali and 10mg of methotrexate by injection . my annual update said my inflammation levels have come right down that is not to say I am sympton free but it will reduce joint damage and side affects are not too bad either. I have not needed short term steroids yet . I have added in yoga tumeric and acupuncture as they do no harm.

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  • Posted

    Hi, I'm on Benepali in combination with sulfasalazine, being sulfasalazine for years and started the Benepali over a year ago, the Benepali works great for me, tried methotrexate but couldn't tolerate it, the Benepali should start working soon, good luck.

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  • Posted

    Hello. I have used prednisone. It helped loads. In the process of trying to relieve pain please remember kidney does not nees a lot of straining. I have discovered that rheumatoid needs a lot of patience. U really need understanding people around. You will definitely get better

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