NRAS
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Light at the end of the tunnel ?

Well finally saw my consultant yesterday . Tbh I felt a right hypochondriac lol . From my chest, knee, both hands, back to not breathing properly and now hair falling out ☹️. I'm currently taking 10MTX, naproxen , zapain so she said the MTX not working but wouldn't increase the dose as way too many side effects so staying on the 10MTX and she wants me to start sulphasalazine then I had knee x ray . Got to go back for ultrasound on my chest and MRI on my spine and hopefully she said she can get me on Biologics . What I am asking is to those people who's been on or are on biologics is it any better?

Thankyou .

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What's best is the drug that works for you....no way of telling in advance I'm afraid as each drug will suit some people, and not work or cause unbearable side effects for others. Generally biologics seem to be well tolerated.

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Thankyou x

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Hi hope you get better .soon and hair stops fallen out .all rumatologists different .mine gave up after 2 attempts methotrexate and sulphasalazine .and says painkillers the way ahead and courses and phsiotherapy etc.i say good riddance and never again with these terrible drugs good riddance.and I felt effects upto a year later and yes I get pain etc but you get used to it now and fight it never again unless bed bound and cannot move ? Xxx take care ajay x

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That's how I feel tbh ... just feel like saying enough is enough I will manage it with painkillers . All these drugs can't be good for our bodies . I've gone from not even taking a headache tablet to my body rattling with all the drugs . Thanx for your reply x

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I know exactly how you feel. Here I am only taking Prednisone currently. But let me tell you...the effects of NSAIDS, steroids, opioids are not good either....everything is messing up our bodies. But once you find one that makes you feel decent, it is easier to accept.

I am thinking of trying low dose naltrexone. I have read some good results, and it is supposed to be "non-toxic."

I hope all your imaging turns out well!

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Thankyou......

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The problem with just taking painkillers is you aren’t stopping the joint damage. Even if you numb the pain with NSAIDs the arthritis is still active and causing damage. Long term use of NSAIDs causes stomach problems. I was on steroids for a long time and they caused me to have cataracts at age 17 and a vascular necrosis in both my hips leading to hip replacements at age 25 and 26. For me biologics have been brilliant, I teach full time in Reception (4 - 5 year olds) and I’m pretty active. At the end of the day if you find a medication that works for you then it can only be a good thing 🙂

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Thankyou Ruth . As long as I can see the biologics are ok for some people then there's hope . I understand what u mean about the joint problems and pain killers just mask over the pain for a short time . They said that you have to hit a certain target to get biologics so fingers crossed ...

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I was put on Enbrel ten years ago I was in an 8 month flare. It was gone the next day so I'd say was a miracle for me. Switched to Benepali not so great. Back on Enbrel. In ten years I've only had one chest infection and that was this year. It's worked for me but I know everyone is different.

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For me Embrel gave me my life back. The effect on the RA was dramatic, all swelling almost gone within 3 days and climbing a mountain within 2 months. I'm aware that I'm very lucky! I had issues for a while with severe site reactions where I injected but that was sorted by being switched from the injection pens once a week to twice weekly syringes that I made up myself. It is the preservative that I am allergic to. Other than a bit of tiredness the day after injecting I have no side effects. I had failed MTX and Sulf before going on to the biologic and stayed on Sulf alongside for a while. Everyone reacts differently to the medications, I was lucky enough to find the right biologic for me first time. So yes, for me biologics are fabulous and have put me into remission as far as the medics are concerned. I still have my bad days but they are unrecogniseable from where I originally was.

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Thankyou for such a positive reply but like you said everyone is different so fingers crossed I get them and get some sort of life and normality back .

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Hi! The road to the right treatment is long and weary. It took 4 years to get me something that worked. I went through the lot when it came to DMRDS and was also on prednisolone until my consultant applied for funding for biologics. Tbh I had gone through such hell for 4 years I just didn’t care what they gave me I just wanted a bit of my life back. I am now on IV Tocilizamab monthly and it has been my lifesaver for 3 years. A lot of other problems have since come to the party (trochaneric bursitis on both sides, Morton’s Neuroma both feet, plantar fasciitis, AF) but at least I feel more like myself and I am having a quality of life. As ruth_p said it’s important to keep the Rheumatoid activity at bay to stop your joints ending up distorted, but I guess a lot depends on how badly you are affected and the ‘type’ of Rheumatoid you have as along with all these autoimmune diseases (and drugs) it’s not a case of one size fits all. Good luck

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Thankyou for your reply... it's beneficial to see how differently people react so that's were I am at the minute so depending on my screens I will hopefully get funded for the biologics.

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