2nd time of writing. I've been on etanercept for a month now alongth with prednisolone due to horrendous total flare all over and no medicine whatsoever for almost 5 months due to complications with tb etc. Starting to get back to health, but still struggling. Had to ask for a further month's supply of prednisolone but am getting no joy from my doctor, rheumy or rheumy nurse. Like I've hit a brick wall. Almost as if no one wants to know. Has anyone else experienced this? Just don't know who else to ask. Many thanks,
Suki.
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Suki63
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I’ve been trying to read up & have found some articles indicating that if you have lung issues, you may want to consider another drug besides the TNF drugs —etanercept is a TNF drug—Xeljantz is not, it’s a Jak inhibitor...taken by pills. Xeljantz May not be as good if you are prone to imfections, however. I found these differences on the creaky joints web site. The site urges you to discuss particulars with your doc—they do cite studies—so it appears to be a god site; they are not vested in any drug. I asked the doc if the biologics could be tailored to the individual but she said we are not that advanced—yet—which I found refreshingly truthful—so that’s why we all must experiment I realized. I sure wish we didn’t have to go thru the suffering & hope they hurry and get to this phase!
Is that creaky joints website for real? Not heard of that one. Getting to my story I did as at the time I saw my consultant I did ask that when I run out of prednisolone can I get repeat prescription and ok'ed it. So that's where I am now. Trying desperately to get repeat prescription but to no avail. Anyway thanks for your reply I'll immediately get on Google to that website you gave me. Many thanks. Take care.
That’s ridiculous that u can’t get pred! If your consultant said u can go on it, the gp should write u a prescription. Just carry on going in and eventually u will get there. Sad as I have a lovely gp who works with me and no one should be in pain if it can be sorted☹️ Good luck
Suki63, yes it’s creakyjoints.com—they have tips, research, ask a question—and they answer.I thought the differences on TNF differences and Jak inhibitors would provoke some dialogue—I’m very interested in differences—seldom discussed.
How very frustrating. Maybe they want to see if Etanercept kicks in. It was the 5th drugs I tried. You have to trial it for so long, I forget how long. It’s the best explanation I can offer. Good luck.
Sorry madmusic lover that last txt of mine about creaky joints meant for wyaatch. Bet I've spelt that wrong as well. Bloody fingers! 🤔Thanks for your reply also. Hope you doing OK. All the best.
Have they not replied to you at all Suki? It’s just taken me 5 days to get a reply from my rheumy nurse, I know they’re snowed under but it’s not good when you’re suffering. How long has it been since you contacted them?
Sorry if I mislead you I'm my post, but I'll try elaborate more here. Last Sept I was on gold injections. Unfortunately due to government cutbacks they stopped them. Just.. Like.. That!! Their next step was to put me on TNF. Adilumumab. That meant tb screening. Xrays etc. That was a 6 week wait. After 6 weeks tests for tb were positive. So 3months of antibiotics and no tnf.( Tnf not allowed). Fast forward to January finally allowed tnf but change of mind and going on etanercept. Gave me 1 months supply of prednisolone. Now ran out last Thursday. Been in contact with rheumy nurse and consultants secretary. Just constant voicemail. Not rang back. Nothing. Reverting slowly back to full flare. That's why I wondered if anyone else had experience like this. Ho hum. Have keep going. Hope you OK. Thanks for answering anyway. all the best.
Hi Suki, I have AS and am also on Etanercept and prednisolone. I developed life threatening adrenal insufficiency whilst taking pred for polymyalgia. It is a side effect from using any form if steroid including injections, and can occur after taking just 3-4 weeks worth, so perhaps that is why they are cautious about continuing. AI impacts every decision I make, when I go out to shops, do any exercise etc. I don’t make any steroids so any stress good or bad, can make me nauseous, lightheaded, cause BP to crash, and can progress to a crisis. I have to administer more steroids to deal with this which can take 30-60 mins to kick in, whereas a healthy persons body adjusts in seconds. It can progress so quickly to an adrenal crisis, which I carry an emergency injection for, and if not administered quickly enough leads to death. AI was also responsible for a stroke I had, which was how I ended up diagnosed with AI. So I would urge caution with them. Are you able to use any of the NSAIDs?, I used to find Arcoxia very good it’s a once daily tablet. I hope you find some relief soon. My etanercept has done wonders for my spinal pain, and methotrexate helps hands, feet etc. Good luck going forward.
Blimey. And I was here thinking I'm struggling. I've not heard of a condition like yours. I do sincerely hope things can get better for you sooner rather than later. Found it very useful what you told me about prednisolone although I am aware it won't apply to everyone. Just as a matter of interest you spoke of your spine. You don't get it at the bottom by any chance and on one side while also in the middle but on the other side? Seems to have hit me there lately for no apparent reason. Anyway thank you so much for taking the time to answer my post. Much appreciated. Take care, all the best,
I have ankylosing spondylitis, which is a inflammatory arthritis that affects the spine and sacroiliac joints. My SI joint is fused, it causes severe pain in the buttocks, and tends to alternate between buttocks. My ribs are fused, I have no chest expansion and feel like I have a vice round my chest. It’s main feature is causing severe night time pain. It also affects my peripheral joints, hands, feet, knees, shoulders and hips. It causes fusion of joints by calcifying tendons and ligaments. Not sure if any of that info helps. I also gave fusion of C6-7 in the neck. I do get muscle pain to the side of my lumbar spine, it’s due to the tendons being shortened by the calcification. If you have RA it is possible you could also have AS. An MRI should confirm if you have signs of inflammation or fusion. Sorry your struggling too 🤗
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