In pain and know one is taking any notice what can I do??

hi I have been diagnosed with WG in December it effected my sinuses and my lungs, I have been on retuximab and finished my treatment two weeks ago. The problem is my face is in pain and my nose with my ears burning and my jaw also bad head aches and this happens every night at three in the morning till about 8 but can go on till afternoon were it is so bad I just cry constant,in the day it's there but no were nere as bad I feel like the treatment hasn't worked and I'm getting wores, I dont think my doctor knows much and I don't no were eles to go I live in Portsmouth anyone know of someone. Around here I can go and see thanks xx

5 Replies

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  • Hi Louise,

    Rituximab is the new wonder drug but it's not always the best for first line treatment. In fairness, it does take time to be effective. There is nobody who is a top expert on WG very near you - you might have to travel a bit. Contact me on jandsmills@btinternet.com or on 01629-650549 so we can discuss this more. Don't worry, help is at hand!

  • My own experience with Rituximab echoes what John & Susan suggest in that it takes time to work. In my case it took a couple of months before I felt significantly better despite my C-ANCA lmarkers falling after just a couple of weeks.

    Nowadays pain relief isn't usually difficult and I'm sure JOhn & Susan will point you at the right person to help.

    Healthy wishes.

  • Hi Louise, I live in Warsash, which is between Portsmouth and Southampton. I am a patient of Dr. Davidson, Rheumatologist at Southampton General. He diagnosed my WG where others had failed to do so., that was in 2002. He sees me on a very regular basis, with the option if I am concerned or things start to get difficult to manage, I ring either his secretary or his senior nurse at the hospital and they address my situation immediately. I have complete confidence in Dr Davidson and his team, he is easy to talk to, listens to me and is responsive in both addressing current problems and looks at other iissues so that he can keep on top of what is happening to me, such as regular bone density scans etc. I hope this helps in some small way

    Sheila

  • Hi Loiuse , your experience with head and face pain is very similar to mine I.E 3 in the morning till mid morning or later .This has also got me to a point of screaming pitch at times , I have an ongoing sinus infection which I believe causes a lot of the pain which is where my Wegeners problems first originated .For this I use the neil sinus rinse kit , steam inhalation ,and naseptin nasal cream throughout the day , It appears that the steriod effects are winding down during the night .Like others have said I,m told rituximab takes about 6 weeks to begin to impact .I am also to have rituximab infusions starting next week however I have had 9 infusions of Cyclophosphomide ( this has now had some positive impact on the pain ) prior to this .It appears John and Susan are to contact you as they have a wealth of knowledge re Vasculitis ,and this website is very informative and comforting at times just to know that you are not alone in your illness .Wish I could give you a fairy wand right now however this condition takes its time and requires proper input from the medics who are familiar with it .You have entered a learning curve which reveals different scenarios each day I still learn 2 years on however hope that some normality is now just around the corner .

    Take care

    Carol

  • I went to a pain clinic, but I have to admit, the best treatment came from my neurologist. I sympathize with you for sure. Hang in there.

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