Sinusitis with PRM

This is more of an irritation rather than a real health problem, however over the last three weeks when I've been reducing my prednisolone I've been sneezing a lot and have had a blocked nose (I know it's not Covid). I wonder whether this is coincidental or could be linked to PRM. I have had a muzzy head and tiredness that I know is due to PRM, but don't know if it is causing the other symptoms. Thanks folks !

[SheffieldJane]

I have had a nasal infection and sinus symptoms since my first lateral flow test ( remember how deep they were with swallowing 3 x etc?) I think that this procedure introduced an infection that I haven’t been able to shake off - over a year now. I have nose drops and nasal cream that just keeps on top of the symptoms and I sleep slightly propped up because my nose gets completely blocked sometimes. I don’t think that I will shake this low level infection or Blepharitis until I get off all immunosuppressants. I agree, annoying but not serious.

[Blearyeyed in reply to SheffieldJane]

I don't know about in your case specifically , but I know of a number of people with various chronic conditions that affect the sinus and throat that are having hypersensitivity reactions from taking the tests , or flares of their usual sinus and throat conditions because the test has triggered an autoimmune / antiinflammatory or allergy response.I know that each time I've had to use them I have had up to a week of runny nose , tickly cough and soreness in the throat plus a but of a sinus headache and I have nowhere near the severity of sinus issues that you experience.

Hope it improves for you soon.

[SheffieldJane in reply to Blearyeyed]

That is interesting. My first test made my nose bleed ( it really hurt) and I’ve had crusty nose symptoms ever since, as well as a completely blocked nose at times and phlegm in the throat. Completely new symptoms for me. I also have Blepharitis type symptoms that coincided with Tocilizumab treatment.

[Hidden in reply to SheffieldJane]

Sorry about your infection. I haven't had a lateral flow test, however my sister has had one and afterwards has had similar symptoms to you. I've told her about your experience and she was quite relieved to know that her symptoms could have been caused by the LFT. Thank you.

[Mazwendy in reply to SheffieldJane]

Just wanted to say I have one and also anti phosphorous syndrome for the last four years I have had terrible problems with my sister uses and was and still on a never ending course of antibiotics.It has come to light over the past year that I keep getting puesdomonas bacteria which makes me feel very unwell and I also suffer from Blepharitis I take the antibiotics for two weeks it gets better then ten days later it's back and there are only a few antibiotics that are sensitive to thebacteria.

So maybe we yours won't clear up maybe ask the doctor to test your sputum for bacteria. My ENT does not want to operate to remove polyps and also wash out my sinuses because of the anti phosphoslipid syndrome and also because I am on warfarin for life.

Just thought it may help some people with on going sinus problems.

[Mazwendy in reply to Mazwendy]

Apologies for the auto spelling Grrh!!

[Karenjaninaz in reply to Mazwendy]

My sister had terrible blepharitis and tried every antibiotic in the book. Finally she read about just using a hot washcloth a few times a day. That actually cleared her up permanently. I wonder if those glands around the eyelashes get sort of plugged up I need to be opened up somehow. I also developed blepharitis with prednisone and used the same thing and it really helps a lot. The doctor recommended a wipes for the eyelids, which has Teatree in it, but it burns. It’s really not necessary. With a hot washcloth I use salt water a teaspoon salt in a cup - I save this solution in a clean jar. Thank you I soak the washcloth or clean handherchief with the solution put it in the microwave for 30 seconds and then, when it’s cool enough, apply it to my eyelids I know that really works; it’s the simplest cheapest thing and there’s no problem with antibiotic resistance.

[SheffieldJane in reply to Mazwendy]

That is interesting. How on earth did you manage to get the diagnosis?

[Mazwendy in reply to SheffieldJane]

They tested my sputum longer in a peri dish and that's what came up puesdomonas and I have had another bacteria as well. They say it is a warm moist place in the sinuses to grow??

[SheffieldJane in reply to Mazwendy]

Thanks, unusually thorough for these days.

[Blearyeyed]

It could be coincidental if you aren't experiencing any of your usual PMR symptoms as well.Many people I know with no underlying health issues are experiencing longer symptoms well after a cold has passed or symptoms like yours even though they have had no viruses and have had Negative LFT tests.

I think it's the combination of things that have made us all a bit more run down as we are more limited during this long Covid period coupled , with the usual Winter weather that is causing a general malaise and snuffliness in us all greater than we are used to.

You might want to keep a closer eye on how your feeling and whether your usual PMR symptoms start to increase for a while however, and assess if you need to rest a bit more or take a little more time before your next dose reduction.

Hope you feel more yourself soon

[Hidden in reply to Blearyeyed]

Thank you Blearyeyed,

[SheffieldJane]

As for the muzzy head and tiredness, welcome to my world. I have also developed an extremely sensitive digestive system with almost constant, in varying degrees of severity, lower abdominal pain stemming from the right hand side. I worry about damage from Pred and or Tocilizumab, they both have gastric side effects.

[Blearyeyed in reply to SheffieldJane]

Have you discussed all of these symptoms you have been having with the specialist whom diagnosed the Tocilizumab?Do you think it's working for you on the whole or are the side effects beginning to outweigh the benefits?

Does it affect the thyroid issues you have as well?

You are probably well versed in dealing with blepharitis but if you fancy a read I left some tips for it on a post yesterday. If you go to my profile page and press the replies tab you should spot the post on the list , as fog and insomnia seems to have made me forget if I wrote it on this forum or the Fibro one , fuzzy, little , bogbrain that I am!

[SheffieldJane in reply to Blearyeyed]

Thank you Bee! I have coped well until I accepted Tocilizumab injections. I can honestly say that I haven’t felt right since. My Rheumatologist has reduced me to fortnightly jabs. She, like me, is very keen that I get off steroids that are hurting my health. Bloods are taken annually for thyroid function, but as we know tiny variations can have a big impact on your well-being. Thanks for Blepharitis tips! All advice welcome. X

[Blearyeyed in reply to SheffieldJane]

Has taking the tocilizumab made a big impact on how quickly you have been able to reduce the steroids so far ?

[SheffieldJane in reply to Blearyeyed]

That’s partly why I stick with it. My initial GCA/LVV treatment was 40 mgs of Pred then my Rheumatologist got me quickly accepted for Tocilizumab. I was able to reduce to 10 mgs Pred in a matter of weeks with no flares. I was amazed. Any further reduction was met with headaches and PMR type symptoms. I have struggled to get down to 8 mgs. My stamina and mobility are poor, I have shifting pains and persistent little infections. I find all this hard to read, unlike PMR which was a breeze to manage by comparison. I have had various MRI scans, XRays, etc. nothing else appears to be going on. Seeing a cardiologist for breathlessness, hypertension, dizziness in a week or so. When I pause Tocilizumab injections for infections/ antibiotics I barely notice the difference. My motivation for carrying on with it is to protect my eyes and long term health. My Rheumatologist thinks things would be better without Pred that has kind of turned on me ( hypertension, raised blood sugar, cataracts, digestion issues, bowel and bladder issues.) I don’t know how I’d know when I was better. There is no sense of feeling a lot better with Tocilizumab unlike Prednisalone in the early days. Thanks for listening. I have been boring on for months now.

[Sharitone in reply to SheffieldJane]

Wouldn't it be lovely if yu could know exactly which drug or disease was causing each symptom. Would make it so much easier. As it is, it's almost a full-time job trying to manage al the symptoms and meds! I hope your cardiologist comes up with something helpful🤞

[PMRpro Ambassador in reply to Sharitone]

As good a reason as any to not start a raft of drugs all at the same time!!! Sometimes you do have to take a couple of new things together - but where things aren't essential they should be delayed by a few weeks - especially things like PPIs and alendronic acid and the like.

[Hidden in reply to SheffieldJane]

Yes, this fuzzy head and tiredness is peculiar, but has become the norm. I do occasionally have a few twinges in the lower stomach, but not enough to worry about. My doctor prescribed omeprazole earlier on, but it made me vomit so I stopped taking it. I'm reducing my steroids month by month now, so will be noting changes with interest 😀 I'll be on 8mg at the end of the month. I'm longing to get off steroids, but it depends on how I feel I suppose. I'm sorry that you are in pain. Mine when it occurs is in my head and jaw. Pressure around my head seems to be there all the time. So far so good, though I have the feeling that as I reduce some of the old problems will return. I would say the worst thing and I think that this is pretty general, is the tiredness. The blocked nose is probably due to the damp weather 🌧. Come on sunshine !

[SheffieldJane in reply to Hidden]

The fatigue is the least of my worries now. I have accepted regular naps especially following a bad night, so it feels manageable and I welcome the learned ability to achieve hours of sleep as and when required. I feel unwell with headache, abdominal, back and limb pain, most of the time. Abdomen is the worst at present. It started insidiously, so watch those twinges. I couldn’t take Omeprazole or it’s like either. Two lots of antibiotics failed to work.

[Hidden in reply to SheffieldJane]

I’m not very good at naps in the day. Silly I know as it would help the tiredness. I’m getting used to missing the winners of Bake Off etc. because I’ve dozed off. Annoying though. My husband tries to wake me up, only to have me doze off again a second later !! I’m so sorry that you have so much pain. I have some, but it’s only in my neck. Interesting that you also had trouble with the Omeprazole. I will look out for the abdomen twinges. Thank you. Re: your pain, would a higher dose of steroids help, as feeling unwell most of the time isn’t good. Or are you resisting this in a bid to keep off them ? I don’t know what will happen once I’m on a lower dose. Probably the severe pain will return and it will be a bit of a battle 👀

[SheffieldJane in reply to Hidden]

I am battling with side effects of Pred now, the Tocilizumab injections are supposed to be my key treatment. I am not sure if a higher dose of Pred would actually make me feel better. I suspect that my abdominal pain is Pred induced. My Rheumatologist advice is to get off Pred and have Tocilizumab injections fortnightly ( because of infections) rather than weekly. I’ve kind of lost the plot with managing my symptoms.

[Hidden in reply to SheffieldJane]

Oh dear, I'm sorry that you are having a rotten time and hope that you can find a way out soon.

[Bloomsbury123]

Hi - I have had sinus problems since reducing Pred for just over a year now. My GP eventually prescribed a steroid spray which really helped but it’s not completely gone. If I mention it to any medical professional they dismiss that it could be linked to PMR because most of them can’t see beyond shoulder and hip pain. I also habve a fuzzy head which I believe is caused by inflamed sinuses.

[SheffieldJane in reply to Bloomsbury123]

There doesn’t seem to be much curiosity with my GPs either. Everything is regarded as an isolated symptom, unconnected to my main condition.

[Hidden in reply to Bloomsbury123]

I suppose that the only solution is to treat the sinus problems separately, funny though that they accompany the reduction in steroids. I had my fuzzy head before the sinus trouble. I’m quite used to it now and accept it as something that comes with PMR 👀

[AyJayBass]

I have suffered from sinus infections for most of my life, had surgery etc. It was finally discovered that I have a primary immune deficiency which makes me more susceptible to infections. This is now treated (IgG infusions weekly) and the incidence of infections has greatly reduced.

Long ago, I learned that the best way to manage a blocked nose is to irrigate/flush with saline solution. The method recommended by ENT consultants is the NeilMed Sinus Rinse. I use this two or three times a day and it helps a great deal. It is available from Boots, Amazon etc. I rarely use their sachets but make up my own 50/50 mix of pure salt and bicarbonate of soda.

boots.com/neilmed-sinus-rin...

[Hidden in reply to AyJayBass]

Thank you AyJayBass. I’ll try the NeilMed.