I've managed to taper down to 7mg (2nd day at this dose so not a done deal yet) and I'm suffering with all the fatigue as expected around this dose 💤💤
My main issue is with nose sores. I've been struggling with them for months and they seem to be getting worse, they are sore too! I've got Naseptin cream but as soon as I stop using it, they return. I'm not even sure if they fully go.
I have a Rheumatology phonecall on the 18th October and I will mention it there too.
Any thoughts or experiences?
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Coffeebeans
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I have this too, from a nasal swab for Covid that I did myself about a year ago. My nose bled and I have scabs and an infection ever since. Like you, I try various nasal creams and ointments that kind of keep a lid on it. I would dearly love for it to clear up. My theory is that it has taken hold so tenaciously because I am immunosuppressed. My GP has been unable to help.
If had during Pred and it was worse as I got to lower doses. I suspect the bug crept in when I was very immunosuppressed. I do have another condition which drops my white cells every three weeks so that sometimes fans the flames. I use Tea Tree cream. No idea if it’s ok to use it that way but it works for me. I’ve often wondered a out getting it swabbed but once I had that idea, GP’s became a rare breed.
I had something similar years ago - I eventually found a nasal cream that worked a treat but I can't for the life of me remember what it was. In Germany my GP told me to use a tannin cream and it worked too
I have developed them too. Down to 5mg at present. One nostril bleeds very readily. Been cauterised twice but can get infected. Naseptin cream helped but only when using it.
I have suffered with internal nose problems, on an off, for quite a few years. What the fundamental problem is I don't really know but I have found that a week of using Dymista nasal spray does alleviate the problem for quite some time but it does come back periodically however.
A product at the chemist is Neilmed, a box of tiny packets of finely measured salt to go into the Neilmed’s soft nasal rinse bottle, with their instructions. I use this every night for a gentle sinus and nasal clean, and apart from helping me breathe better over night, I’ve not had any further nasal sores. There are similar products on chemist shelves, might be a help.
The NeilMed Sinus Rinse bottle is part of my essential kit, I use it three times a day to clear out the effects of my perennial allergic rhinitis. I mostly use my own mix of 50% pure salt and 50% bicarb to make up the saline solution (this mix is as recommended by the Royal Free Hospital pharmacy).
Salt alone will burn the lining of your nose and this will build up over repeated use. When I was referred to Professor of Rhinology Valerie Lund at the Royal National Throat Nose and Ear Hospital in London a few years ago, she took one look up my nose and said I should stop using just salt in the SinusRinse and prescribed a 50/50 mix of salt & bicarb. I quickly realised I could make my own but was careful to find a source of pure salt, with no additives. I use one teaspoon of the mixture per 240ml. The NielMed sachets are also a mixture of Salt & Bicarb. (see Boots website for example)I shall be forever grateful to Prof Lund as she ordered blood tests which showed that I have an Immunoglobulin G (IgG) deficiency. I was referred to the Royal Free Hospital and have been receiving IgG therapy which has almost eliminated the frequent sinus and chest infections that I had been experiencing.
I am a bit confused. You say that the Neilmed sachets provide a mixture of salt and bicarb, but it is not 50/50 mix, is that correct?
So far the mixture is fine for me, at least I thought so.
What is the relationship between lgG deficiency and sinus and chest infections? I never read or heard of this and I'm very interested. I will look up Professor Lund to see where she is based at present and if I can be referred to her as I am dogged by nasal congestion and winter chest infections every year (except the Covid lockdown winter of 2021 amazingly)
It says on the NeilMed sachet that it contains Sodium Chloride (Salt) and Sodium Bicarbonate (Bicarbonate of Soda) but it does not give the relative proportions - they have to have some trade secrets!
The link in my post takes you to University of Michigan Health which mentions the 50/50 proportions for Nasal Saline. I prefer to mix my own as it the cost is tiny. The sachets are very useful when travelling.
I believe that Prof Lund may now have retired. I saw her a few years ago privately.
A blood test will indicate IgG level, the "normal" adult range is 6.0 - 16.0g/L
Hi Coffeebeans. I have exactly the same problem👃 and use Naseptin cream when my nose gets really sore. The GP explained that it was rhinitis which unfortunately, is rather like a continuous runny nose. I use the Naseptin when it gets really bad, but other than that as long as I've got a hanky, I try not to let it worry me. ~The only time I panicked was when my GP asked me if I was allergic to peanuts cos I thought he was going to suggest I stick one up each nostril 😆 but apparently the cream contains peanut oil so if I was allergic, it wouldn't have been much fun using it!!!
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