Help, in middle of longest worst flare ever - struggling to cope

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Hi there, I've been diagnosed for around 10 years and have managed very well for most of that time, I've gone through various treatments and am now on methotrexate and leflunomide, I've just been taken off Humira which stopped working for me, and have started Rituximab. I've been getting worse and worse for the last six months and now have been signed off work. I am told I'm anemic and they want to do an endoscopy in case I'm bleeding in my stomach - I'm really scared of this and wonder if it's really necessary - I've taken naproxen for a lot of years which I know can affect the gut, but think I could just be treated for anemia and suspected ulcer without having to go through the proceedure, which on top of the join pain, lack of sleep and general distress, is frankly the last thing I need right now - any light at the end of the tunnel stories to help me out?

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  • Posted

    The endoscopy does sound necessary, though I can understand why you don't want it. Sedation should make you forget the bad part of having it and as there are many causes of anaemia it is important to rule things in or out. The naproxen is the likely cause, but it is important they know for sure before starting extra drugs that may interfere with your RA drugs such as methotrexate  You do seem to be going through a rough time but there is nearly always light at the end of the tunnel. Be brave about the endoscopy.
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  • Posted

    An endoscopy is realy no big deal. The whole process, from check in to the facility, to going home, takes less than a couple hours.

    I think it would be prudent to have it in order to rule out more serious issues. No reason to be scared. It's easy. Just a little twilight sleep and it's done. So maybe it's best just to "reframe" it so that you equate the endoscopy with a lovely nap. There is no major prep or aftercare....it's something that, after t's done, you wonder why the heck you worried about it!

    Are you still taking Naproxen? Why not have your doctor switch you to Celebrex which is easier on the stomach?  [I had a bleeding ulcer from another NSAID.]

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    • Posted

      In the end, it is not a painful procedure at all, no matter whether you have anesthesia or not. It's just the idea of something going down the nose/throat.....instinctively we don't want this. The trick is just to relax and breathe normally and it's over in nothing flat. No pain, no gagging....

      I've had it done with and without anesthesia.  I would probably choose that route only because when you choose the anesthesia method,  it's such a hassle to fast the night before and make arrangements to have someone take me to the hospital and back home again [because you can't drive after anesthesia].

       

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    • Posted

      Thanks again, I guess it just all feels a bit , uchnwith the ra pain as wee, whichn is preyty overwhelming. It was a surprise to hear I might need the test and people love to share horror stories.

      I've just had my second infusdion of rituximab and am praying for some relief soon. Have had a couple of weeks off work and worried about loosing job as well, and letting everyone down :-(

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    • Posted

      If you haven't yet, it might be a good time to talk with your supervisor about what's going on and how it impacts your work. Explain that with the new drug, once it kicks in, which may take a little time, you expect to be improved and able to function in your usual capacity. Until it does, perhaps you and your supervisor can come to some agreement to temporarily lighten your work load, or perhaps reduce the number of weekly working hours.

      I think most supervisors really just want to know how much they can count on you. Case in point:  a woman I've worked with for years came down with cancer and needed time off for chemo. Linda is intelligent, did her research, and knew that even though she is a strong woman and never gets knocked down for long, that chemo would knock her down for a bit, and affect her job. So she went to her supervisor and explained that she has cancer, needed chemo, and that while she didn't want a leave of absence, she needed the freedom to reduce her hours, based on how she was feeling that week. They worked it out.

      For Linda, just knowing that her employer was willing to work with her, it meant everything. Such a stress reduction [not having to worry about whether she'd have a job].

      I dont know what the laws are in the UK with respect to job termination and medical disabilities [temporary or not]. In the US if you take a medical leave your job cannot be taken from you. [I've simplified this, but basically this is how it goes. Not sure about the UK.]

      People do love to share their horror stories. It's like most forums.....you only read about the bad stuff. You never seem to read about the GOOD stuff because those people are out having fun and living life to its fullest. [And this is one of the reasons why I check this forum....I want people to know that good, effective treatment is out there and you CAN get your life back.]

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  • Posted

    Hi Georgina, I don't have RA but I have had a number of Endoscopy's and also Colonoscopy's. It really is nothing to worry about, and hospitals do give sedation, I've had it every time. Let them know that you are a little nervious and they will give you sedation or if you prefer they can also give you a numbing spray for your throat. I hope all goes well for yousmile
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  • Posted

    You're very welcome, as I said, I hope all goes well for you smile
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