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Trouble with jaw and throat during a flare up

Posted , 2 users are following.

Tumtum1963
Tumtum1963

When my RA started five years ago I had poly arthritis which settled in my hands and wrists. It felt more like like fractured joints - several at a time or sometimes just one. I did get general stiffness and it was excruciating but methotrexate and hydoxichloraquine chased it off. Sadly I couldn't tolerate them so came off with the support of my consultant - after three years of three DMARDs. 

Now, nine months on my jaw has been hurting for five months. I have had flu and a chest infection followed by flu-like pain everywhere - especially in my feet, ankles, shins and knees. But although this pain is intense and widespread it isn't showing up as hot, swollen joints and it I don't have fracture pain as I did. Instead I have tummy pain, a hoarse voice, dry eyes and nose and the jaw pain plus I'm always dizzy. I have lost my sense of smell and taste and my hearing feels a bit muffled.

Does this correspond with anyone else's experience of RA? I start a new immunesuppressant next week. 

0 likes, 7 replies

7 Replies

  • kim94523
    kim94523 Tumtum1963

    Posted

    Hi Tumtum... so sorry to hear of your pain!  I am newly diagnosed so I can't speak much to my personal experience with your symptoms but I have read of all of these being RA related.  It sounds like your disease is active and you are having a flare.  You said you are off DMARDs... are you on anything else??? You should be.  Have you thought about biologics, like Humira?  That is what I am going on next week.  Best of luck to you... google your symptoms... I'm sure you'll find evidence that these are RA symptoms.  Kim
    • Tumtum1963
      Tumtum1963 kim94523

      Posted

      Hi Kim - thanks for your reply. My GP also thinks it is probably part of my RA. However until my symptoms return in the form of visible hot swollen boggy synovial joints I wont meet the criteria for Biologic drugs. In the meantime I start Azathioprine next week.

      I was really just wondering if anyone else had hoarseness, painful jaw and my other ENT and neuropathic problems without any sign of synovial joint swelling? It just seems rather unusual.

      I do hope the Humira works really well for you. TumTum

    • kim94523
      kim94523 Tumtum1963

      Posted

      Hi Tum Tum... wow.. that is too bad!  I would think the blood tests alone would meet the criteria for biologics.  I'm sorry.

      I know some people get horse and even lose their voice.  I read something about it... I would paste a link but the moderators will delete it.  Anyway, hopefully someone with experience will answer you smile

      I hope you get relief soon!

      Kim

    • Tumtum1963
      Tumtum1963 kim94523

      Posted

      Thanks Kim. Are you based in the UK? The NHS has very strict criteria for prescribing anti tnf/ biologic drugs. I meet half of them already having failed more than two DMARDs over a 3 year period. But because I don't have more than a couple of very slightly imflammed joints in my hands my disease activity score is not high ebough for me to meet the other half of the DAS28 criteria.

      Regarding bloods - my ESR is usuallly high and I have a raised PVC and total protein (whatever that means) but hoping very much that Azathioprine will get things under control at last. I hate having jaw pain and the hoarse voice is very annoying. However I am just getting over flu and a chest infection so hoping it will recover in time now I have ceased coughing.

    • kim94523
      kim94523 Tumtum1963

      Posted

      Hi TumTum, no, I'm in the US.  I have heard similar complaints about treatment on the menopause forum.  I will keep a good thought that AZA helps you!!!

      Speaking of UK Healthcare, what is a "consultant" in that system?  We don't have them here.  Most people have a regular doc, like a GP, sometimes called a "Primary Care Physician" (PCP) and then there are specialists.  Never heard of a consultant but it sounds like they have some power over there?

    • Tumtum1963
      Tumtum1963 kim94523

      Posted

      Hi Kim. Consultants are specialists - GPs are primary care doctors. I didn't realise that the term consultant wasn't universal? Interesting.

      I think you were right to suggest that jaw pain and hoarseness were probably part of an RA flare because my ESR (sed rate) is up at 58. Not the highest it's ever been but definitely telling me that my widespread pain is part of the inflammatory process.

      Liver and White blood cells are healthy though so I can start the Azathioprine next week hopefully. TumTum

    • kim94523
      kim94523 Tumtum1963

      Posted

      Hi TunTum, yes, "GP" is the same here but never heard a medical professional referred to as a consultant smile

      oh man!!! That sed rate is high... Poor thing! Glad you're cleared to go on AZ next week! Check back and tell how it goes smile k

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