Humira?

[Trevgrrl]

I don't really know if I'm finished with PMR, since I still have a lot of pain. But the dr. thinks this pain is now mostly fibromyalgia with osteoarthritis, too. I have a feeling she is right now, but I still take the prednisone 25mg and feel like I need it. But probably I don't, since it isn't helping me much. The dr is suggesting I take humira shots. I haven't researched that yet. Anybody have experiences?

[PMRpro Ambassador]

Why Humira? It is an anti-TNF factor drug and specifically warned against for PMR in the 2015 Recommendations:

rheumatology.org/Portals/0/...

It is considered that the adverse effects and lack of efficacy don't justify its use.

[Blearyeyed]

Humira rather than Actemra ?

Do you have other non arthritic or PMR symptoms that make this an appropriate alternative that you really require ?

It's not the standard for Fibro either , I would ask why they are even considering that and maybe request more information and seek a second opinion if they are pushing for its use.

How long have you suffered from PMR ?

If you haven't gone into full remission and tapered from Prednisone , it would be very difficult for your GP to make a diagnosis that you are suffering from Fibro alone if the pain is still in the same pain points as your original PMR , and responds to higher doses of Pred.

Are you on other Fibro specific pain medication ?

that should be tried first , the guidelines wouldn't usually allow the use of Humira for anything until the patient has proved that they don't respond to , or cannot use the cheaper, more common alternatives.

It sounds like they are making one too many assumptions based on lack of knowledge about how long PMR can last in the body , maybe they are taking their lead from the Rheumatology Rulebook and not considering the complexity of the individual patient.

Keep us updated , as I think getting as much support on this decision as you possibly can will be useful to you.

[Hidden]

If you don't have fibro appropriate painkiller and an anti depressant like amitryptiline used as a pain killer too at low dose or something like pregablin, you need to. If you can get pain relief from those once they are maxed out then I suspect it is fibro. This can be done while you slowly taper pred. I have only take over 30mg pred once and it didn't help the fiibro. I had a massive fibro flare earlier this year and it has taken several weeks to get it under control but it is now with tramadol and duloxetine. I am at 6mg pred. I don't know why they are suggesting humira seeing as not recommended for PMR and as far as I am aware it's not used for fibro. Let us know what's happening and what the next step might be.

[Blearyeyed in reply to Hidden]

I've not heard of anyone using Humira or other Biologics that work for arthritis or PNR for Fibro.

You basically listed most of the drugs used and found effective for Fibro management in your reply .

As you say , the Pred only really masks the nerve pain associated with Fibro at higher doses it doesn't actually help to manage it , as soon as the Pred dose decreases to a certain point if you have Fibro or various other nerve pain conditions and you aren't receiving medication for them the neuropathic pain seems to ping in instantly.

[Hidden in reply to Blearyeyed]

I only went as high at 15mg and had no relief from fibro. It's constantly at 5 to 6 but when it gets to 8, 9 and then 10...well let's just say it's 10. I am sure you must have been there. It stuck at 7 so a middling number. Obviously 1 to 10 means different things as you go along with a condition. It been a bit better since neuropathy has been controlled a bit. The issue arises when each condition has a different number on the pain scale....that's what muscular tourettes is useful!!

[Blearyeyed in reply to Hidden]

What that feeling that you are giving birth 24 hours a day and any form of clothing feels like you are being attacked with hot knives , that sort of 10??

Oh , yeah , Been there !😋😁

And yes , you are right what I considered to be a 10 , 15 years ago , often doesn't rate as a 3 these days.

It's probably why Men get accused of Man Flu or Malingering when they get ill or injure themselves because they don't have a monthly attack of pain like women do that helps them get used to the experience of pain more regularly.

Saying that even after giving birth , I would still act like I'd been shot when I got a paper cut. 😋😂😂😂

It's all a matter of what is in pain and where the pain hits .

Oh , and yes , it is funny when you get asked what score you would give your pain at an appointment and you have to say , " Should I take the average ? As the head is an 9 , but the legs are only a 5 , and the stomach notching up a 6 today !"

[Hidden in reply to Blearyeyed]

I knew you would know!

[Blearyeyed in reply to Hidden]

😋😂😂😂😂😘

[Trevgrrl]

your comments and articles have caused me to say no to humira. I had mentioned Actemera to her last time because one of you mentioned it. Then this time she said, remember you said Actema, well what about humira? So that is how she came up with it. I don't know why she didn't stick with Actemra, the original suggestion.

[PMRpro Ambassador in reply to Trevgrrl]

Obviously she needs some education!!! Not all biologics work for all disorders.And she should know that!

[Blearyeyed in reply to Trevgrrl]

You haven't got any other health issues then that she's considering like recurrent ulcers or coeliac/ Crohn's , Ulcerative Colitis or Uvietis then ?

I would be suprised that she could get the Humira signed off by the insurance company or in the UK by Nice without another condition that required it.