Floundering

[Wonderfullifeandmore]

Good morning everybody, I am floundering again I had my first appointment with an NHS rheumatologist after waiting a year. I have previously seen a private one. I have been taking Hydroxy for 10 months but the new Rheumy said my RF had increased so I needed another DMARD as I am unable to take MTX due to a lung condition I opted for Azathioprine which I started yesterday, however my main concern is I have Sjorns syndrome which I use eye drops daily and a dry mouth spray, but the insides of my lips are so dry and I have lumps which come up inside of my lips and my voice keeps getting gruff I don’t know who to ask re this problem do I see the GP or contact the rheumatology nurse although I’ve not been told there is one. Thank you for reading this your advice on this site is invaluable.

[Madmusiclover]

Do both! I rattle any cage bars available to me. Good luck.

[Wonderfullifeandmore in reply to Madmusiclover]

Yes I get that. Thank you

[bpeal1]

If you can’t find a contact for the nurse contact the rheumatologist’s secretary.

[Wonderfullifeandmore in reply to bpeal1]

Thank you I will.

[Oshgosh]

I’m the same- floundering is a good description of how I feel.

My Sjogrens is driving me crazy,my eyes are not too bad,but my mouth is so uncomfortable,my mouth is sore,my tongue feels rough when I eat,my lips are dry and the corners of my mouth are really sore.

I was using Blistex,then bought the OTC ream for cold sores,it made no difference,I’m now usingCymex,it’s ok,but it only relieves the pain /discomfort.

I had rage Moderna vaccine 2 weeks ago,I had a bad reaction to it I still don’t feel back to my normal,it’s upset my rheumatoid athritis and I am still keep going dizzy. I’ve re read your post,my symptoms are like yours ,lumps in my mouth gruff voice.

I thought I was going mad,I’m going to have to ring the Dr,I’ve missed an appointment with practice nurse,which is something I never do.

I hope that you have a reasonable day.

[Amnesiac3637 in reply to Oshgosh]

Hi. Interesting you should say you’re dizzy after Moderna vaccine. I had my ninth vaccination yesterday - only had Moderna once before, all the others were Pfizer - and today I feel really dizzy and a bit sick which is galling as I’ve never had any reaction to any of the jabs before. The side effects listed don’t mention dizziness unless for allergic reaction which this isn’t. I wonder how many others have had dizziness. It’s most unpleasant. Do hope yours goes soon as does mine!

[Fruitandnutcase]

As well as the other suggestions you could try speaking to your pharmacist as they are very experienced in various drugs and their reactions and might be able to advise - plus you could speak to them right away.

[Wonderfullifeandmore in reply to Fruitandnutcase]

Yes that’s a great suggestion I will do that. Thank you.

[Amnesiac3637]

All good suggestions - follow all of them and as madmusiclover says, rattle all the cages until you get an answer. All best.

[Researchfreak]

morning wonderflife I too have scorns it is extreme. I had lovely teeth and within 9 months they rotted and snapped off at the gum. So dentist is very important. I went to dentist monthly but no help for me. I saw the top man IN England Professor ing. at the Freeman Hospital in Newcastle . He said what I already knew there is no cure only management. You can try the different meds like pilocarpine. No good for me. Use Vaseline for lips and carry water everywhere day and night. I suck mentos sweets which produces saliva. It’s a constant nightmare but you learn to live with it. Hope meds work for you. Your Dr or rheumatologist will give script for meds. Dr is quickest route.

[Wonderfullifeandmore in reply to Researchfreak]

Thank you this advice is really helpful. I am speaking to my Dr thus morning. I am worried about the lumps inside the top and bottom lips that swell and then go down is that also Sjorns or could it be something else.

[Researchfreak in reply to Wonderfullifeandmore]

Yes lumps dry lips burning young many ulcers very red swollen young. It’s quite distressing at times. I lost over 2 stone as it’s difficult to eat when mouth so sore. It’s awful but you have to find your own way to cope. I’m in the process of getting full implants on lower jaw. So at least I will be able to chew.

[Wonderfullifeandmore in reply to Researchfreak]

Thank you. I am so sorry that it is so bad for you, good that you are getting implants.

[Wonderfullifeandmore in reply to Researchfreak]

Hi thank you for your reply and good advice. I will certainly do what you suggested yes my dentist is aware of it and I will be going more often than usual.

[OldTed60]

The Azathioprine should help your Sjogren’s too hopefully but I would contact your rheumatology nurse or report to rheumatology via their secretary because a Sjogren’s flare up needs monitoring as well as RA. Also tell your GP so they can report back to rheumatology.

[Wonderfullifeandmore in reply to OldTed60]

Hi thank you I will hope the azathoprine starts to kick in soon I’ve only been on them for 2 days.,

[Numptybrain]

I know how you feel, I’m yet undiagnosed been on prednisone since March which has removed fluid from lungs and heart but I have dry eyes and mouth and nose, gets lumps in mouth ulcers and sore corners also have to use drops and gels for eyes and still can’t see clearly, he doesn’t seem to want to address this problem. I’m awaiting a CT scan to see if inflammation has gone and then get diagnosis but goodness knows what it will be.

Good luck

Wendy xx

[Wonderfullifeandmore in reply to Numptybrain]

Well I hope they get to sort things out for you soon, I’m still on Predisolone as well as hydroxychloroquine and azathoroprine and do it goes on.

[Numptybrain in reply to Wonderfullifeandmore]

I’m starting immunotherapy soon hopefully after lung CT scan this month.

Good luck

Wendy xx