Possible sinus problems.

[Hoopy1950]

Hi everyone - just wanting some feedback please. Diagnosed with GCA May 21 and being treated with prednisone and am trying hard to taper and presently on 8mg and my rheumatologist has added Methotrexate to help the tapering. Also treated for supra ventricular tachycardia. At present I am struggling with what my GP thinks is a sinus infection masked by the steroids. I do not have blocked nose, no facial tenderness and no other sinus type symptoms apart from mildly blood stained post nasal drip first thing in the morning, also sore tongue and slightly red right tonsil and feeling generally unwell. I am now on my third run of antibiotics which have given me oral thrush. Has anyone else suffered with these symptoms please? I am not a happy chick but if this is a common occurrence with others then I will be a slightly happier chick. Power in numbers 🤣🤣🤣🤣 This is an awesome site by the way - it’s fabulous to know that we all understand each other and help each other. Thank you 💕

[PMRpro Ambassador]

Has the doctor done a throat swab to see if it really IS a bacterial infection and if it is, which is the correct antibiotic? Normally they are totally paranoid about abx but I am equally paranoid about repeated use of abx because one doesn't work - a GP who did that nearly killed my husband, it wasn't an infection.

Have you stopped the MTX while on the antibiotics? You should and it may be the reason the abx haven't achieved anything.

To be at 8mg pred for GCA after just over 2 years is fine - I wouldn't accept MTX at that level after that time. Different if it is 18mg or 4 years, although GCA commonly lasts 4 to 5 years. They are in such a hurry. And at 8mg you also have the problem of getting adrenal function to return - it doesn't happen overnight and it requires very slow tapering and patience.

[Hoopy1950 in reply to PMRpro]

Thank you. No she hasn’t done a swab and, if this lot doesn’t work then I will be asking for her to investigate further. Thanks for the advice re AB’s and methotrexate - I will check with my pharmacist tomorrow. I’m happy to taper very slowly at this stage - .05mg every 3 to 4 weeks. I have done much yo yo ing over the last 6 months so will be slow and steady.

[PMRpro Ambassador in reply to Hoopy1950]

You should have been told at the start of MTX to stop it if you have any infections - it is standard protocol but I wouldn't be sure a pharmacist will know, they just dispense it! Have you a rheumy helpline that bothers to answer?

This

versusarthritis.org/media/2...

sits on the fence a bit - tells you to ask your rheumy nurse - but I note that a sore throat is one of the things requiring investigation. Did it start after you went on to the MTX? Are you having very regular blood tests?

[Hoopy1950 in reply to PMRpro]

No wasn’t informed at the start of MXT. I am having regular blood tests and the last one a few days ago was ok. However in light of what you have said I will now ring my Rheumy on Monday and ask their advice. Dearie me this disease is a trial isn’t it? You have to be on top of your game all the time. Thanks for your advice - much appreciated.

[Sophiestree]

Just to add, I have LVV and one of the signs for me (and one of my original symptoms I presented) is a sore throat and glands that play up around my neck. Just a thought.

[Hoopy1950 in reply to Sophiestree]

Thanks Sophiestree.

[Preacherball]

Whenever I see a post relating to sinus issues with GCA my "antennae" go up, as this was part of my initial diagnosis, in July of 2021. If you have a few minutes, you can read my profile and see if any of my experience has been similar to yours. I am no longer on prednisone since early July, but take weekly Actemra injections. My rheumy intends for me to continue the injections for a total of 3 years (July of '24) at which time we'll have a plan to hopefully end the injections. Time will tell...

[PMRpro Ambassador in reply to Preacherball]

Me too - but for a different reason: GCA-type symptoms plus sinus problems can also be typical of a different vasculitis which is treated differently.

[Hoopy1950 in reply to PMRpro]

Well that’s interesting. I do feel that my GP, as lovely as she is, is paying lip service to my present problem - quite happy to dish out AB’s but not investigate. I am due to see my Rheumy middle of October but will ring on Monday and report my present situation, ask about whether this could be a different vasculitis and see what transpires. Thanks all - this is such a great facility - we are not alone, we have an army of support. Go us 🤣🥰

[PMRpro Ambassador in reply to Hoopy1950]

Do the ABs achieve anything?

[Hoopy1950 in reply to PMRpro]

Very little - slight improvement maybe for a short while. Really fed up with it now - it’s been going for about 4 months.🙈

[PMRpro Ambassador in reply to Hoopy1950]

Then it needs proper investigation. Ask the rheumy if they think that you could possibly have this:

mayoclinic.org/diseases-con...

It might not be - but it could be,

[Hoopy1950 in reply to PMRpro]

Thanks for that info - have just read it and there are similarities so I will certainly be asking about it.

[Fries]

Having suffered with sinusitis most of my life your symptoms do not sound like it at all. You would notice the difference when looking down at the floor - pain in the head and front of the face, you would have inflammation and a feeling of heat in your face and sinuses. You know when you have sinusitis, believe me!