Advice on pain & difficulties when swallowing

[AllyGY2013]

I'd love some advice....

I suffer with my sinuses and have sjorgrens as well as GPA/Wegeners and my throat is so very dry. I make sure I drink plenty throughout the day, and night.

I went to my GP about a month ago and said my sinuses were painful and the top of my nose, inside, and that I was having trouble swallowing as it is very painful, in fact I had almost died twice when eating a sandwich and it got stuck at the back of my throat and I couldn't breath (no exageration) also my jaw joints are very painful especially if I eat anything crunchy.

He told me that my dentist could do me a referral to a specialist next time I saw him and I am to mention the jaw pain to him, and that sinuses 'can't be painful unless there is an infection' which I don't have. He arranged a blood test and his secretary rang me a couple of days later to say they are fine.

It's hard to explain but I'll try... the roof of my mouth at the back (soft palate?) is slightly puffy on my right side and the whole of this area hurts alot when I swallow and aches the rest of the time and the roof of my mouth feels hot to me. When I swallow my neck hurts inside/throat and a clunking occurs - I can't describe it any other way - around the adam's apple area on my left side. This keeps me awake at night as every time I swallow I wake up with the pain.

I also notice that my muscles are cramping up and painful if I sit then start to move around, they settle quickly it lasts only a few seconds but is very cruel and some of my joints especially in my arms and hands and neck are painful and the muscles in my lower arms are painful.

I am taking thyroxin, plaquenil, anti-inflammatories and paracetamol.

I'm going back to see a different GP next week if I can (he also has rheumy interest) and am due to see the specialist (Dr Davidson) in October any questions, advise or thoughts would be welcome.

Ally

[bowler]

I am no expert on vasculitis, [ I have GCA and take steroids for that ] Perhaps you are having a flare of your GPA and sjorgrens and need some stronger medication,

hope you soon feel better

[Hidden]

Ally,

I agree with Bowler, it sounds to me as if the underlying disease ( GPA ) isn't under control. Plaquenil is ok for joint pain and fatigue but it won't do anything for active GPA.

I had to laugh at your GP's assertion that only infection causes sinus pain. As part of my disease I have long standing jaw/ facial pain. Sometimes jaw pain when chewing is claudication, that is the blood supply to the jaw is insufficient due to inflamed vessels. You can also get tracheal stenosis with GPA, inflammation at the back of the throat which causes swelling making it difficult to breath and I would imagine to swallow.

Do you have a specialist nurse that you can contact or failing that your Consultants secretary. October is a long time to wait with these symptoms.

[AllyGY2013 in reply to Hidden]

There is a helpline number and they phone you back in a couple of days. I can see GP same day or my rheumy who comes to area once a month so October would be next available time, when I am scheduled but haven't been informed of appointment yet.

[Hidden]

Concerned, do you have Vasculitis?

[Hidden]

AllyGY I agree with the above.

This caught my eyes. I got this since infancy: "the roof of my mouth at the back (soft palate?) is slightly puffy on my right side and the whole of this area hurts alot when " and I am never diagnosed with WG. I often think "different" types of V cause very similar symptoms.. I do indeed have sore nasal cavity and sore "nasal bones" at the roof of my nose (not sure what to call this "bone" lol), essentially a facial pain. I am somewhat surprised by your WG and not on any immunosuppression. However, I do notice that some people don't seem to be on any, except regular IVIGs or Biologic infusions.

[AllyGY2013 in reply to Hidden]

I was also suprised by no immunosuppressant but others on this site have reassured me previously that this can be the case. I was on steroids at the start (2012 ish) but not for very long.

[Hidden in reply to AllyGY2013]

Those patients who are in remission may not need immunosupression but all patients with active Vasculitis do whether it be prednislone or other drugs such as Methotrexate or Azathioprine etc.

[AllyGY2013]

Saw GP today and he has given me a prescription for glandosane (synthetic saliva) to try and see if it helps. Agreed inside of mouth puffy and not a tooth problem. Advised to suck a lemon and see where/how much it hurts as he suspects it's the saliva glands causing the pain. Also told me that the rheumy I have been seeing has left and won't be coming back to island so have new one, didn't have name for me, and as they have a backlog I will have to wait until December for next appointment - probably - terrific!

Ah well, no good moaning, gets me nowhere, just carry on taking the meds.

Thanks for all your replies, I really do appreciate them.

[Hidden in reply to AllyGY2013]

Ally, given that Vasculitis is rare and your treatment has been unusual is there any way you can request an appt off the island with a Rheumatologist experienced in Vasculitis? There is no guarantee that the new Rheumy will have any experience in Vas.

[AllyGY2013 in reply to Hidden]

Hi Keyes,

Unfortunately our local health department are resistant to sending anyone off island as it costs a fortune, as we have no reciprocal health agreement, but you can pay to go privately however the danger in that is.... if you are deemed to be able to afford to go private then they can remove all funding for your treatment and make you pay for all your treatments for any ailments not just the one.

We are selling our house at the moment and I must admit I have thought to use some of the money to travel to England and get a second opinion after talking to health authority as I can't afford to lose their funding support.

I am in limbo waiting to find out who the new rheumy will be and when I'll see them but I will be asking what experience they have.

Ally

[Hidden in reply to AllyGY2013]

Ally, that's awful to be stuck in that situation. Health care is a real postcode lottery sometimes. I will keep my fingers crossed that the new Rheumy is very experienced!