Waiting for embrel. : Hi everyone. My consultant took... - NRAS

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Waiting for embrel.

Slumberparty profile image
9 Replies

Hi everyone.

My consultant took me off all meds excepts for mtx around a month ago. I am waiting for embrel now. Which I should get next week. I have had several nodules pop up, but I have also started choking on drinks, and sometimes saliva. It is so frightening for myself and my children. Could this be Linked to RA?

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Slumberparty
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nomoreheels profile image
nomoreheels

That must be concerning but I've never heard of RD affecting the throat like that or as a reaction to MTX though it can affect your voice & throat. I don't know if you've been on it a while but if it's something you've not experienced before I would definitely see your GP about it as I don't think it should be left & really needs investigating.

Slumberparty profile image
Slumberparty in reply tonomoreheels

Thanks for replying no more heels. You are right. I need to make an appointment ASAP!

nomoreheels profile image
nomoreheels in reply toSlumberparty

Oh good. Let us know how you get on. I'd be interested anyway as I've not heard of it relating to RD, if it is of course.

Slumberparty profile image
Slumberparty in reply tonomoreheels

I doubt it is, it's just that I am getting more of the nasty parts of RA since my drugs were stopped. Mainly the nodules, but much worse joint pain. I'm a physical wreck!

Thanks for taking the time to reply to me x

nomoreheels profile image
nomoreheels in reply toSlumberparty

No probs. Sounds as though MTX alone unfortunately doesn't work as well for you, which makes sense with enbrel being introduced but at least it should cover some of it & they've not left you with nothing which would be worse! But definitely see your GP about it just to be sure. x

Hobbits profile image
Hobbits

Hi Slumberparty. Can you expand on what nodules you are getting? Do you mean cysts?

I have recently developed four on my feet, a kindly person refreshed my memory and they are called ganglion cysts. Three of mine are squishy like a blister deep under the skin and the fourth is hard and solid.

They have developed in the last six months while on various DMARDS including MTX.

If you develop these while on meds does it mean the meds are not working properly?

Slumberparty profile image
Slumberparty in reply toHobbits

Ganglions and RA nodules are different things. My consultant confirmed I have nodules, but I am now on Enbrel, and the nodules are slowly going down. I guess that says my previous meds weren`t working properly.

I think you need to ask about yours at the next apt. Nodules appear on joints, and are common on feet. I feel for you x

Hobbits profile image
Hobbits in reply toSlumberparty

Oh that's great they are going down!

Yes it seems I may need further conversation with my Rhuemy. He did call them ganglion and I asked to have then cut out, because of where they are located, right over pressure points on my feet and are most painfull in the morning until I put shoes on. My Rheumy just told me he thinks once I'm on Humira in December he thinks they will shrink or disappear.

I did some research and found my ganglion cysts are caused by synovial fluid leaking out when the joint is inflamed. The leakage forms a pocket or cyst close to the joint. The fluid is cleanish and sticky but is not harmful, but can be painfull. 80% of ganglions appear on wrists and hands. 11% on feet. So I am hoping once I start Humira these bothersome cysts go away.

I hope your nodules also continue to disappear as your treatment continues.

Slumberparty profile image
Slumberparty in reply toHobbits

Fingers crossed for you Hobbits. Living with pain is so wearing.

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