Extra steroids?: Having had my first cold since... - PMRGCAuk

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Extra steroids?

ladygigger profile image
24 Replies

Having had my first cold since before the pandemic after Christmas, I went off the to the doctors about 10 days ago because although I felt I'd recovered I was deaf in one ear and had sticky eyes. One ear hadn't 'popped' on the flight out or back to the UK and once the cold kicked in it got worse.

Currently down to 6.5mg on a dead slow taper - technically it's supposed to be 0.5mg a month but I'm not reducing until the pain has gone.

My doctor seems to have a thing about Beconase because he told me to go and buy some. I pointed out that I am, of course, already on steroids but don't think he heard me. He also 'prescribed' Beconase for my partner, who was suffering from his usual sinus drip and coughing for a couple of hours at night.

10 days in and I can't spot much difference; my hearing is still muffled. I've also been steaming with Olbas oil and tried using a Neti Pot for the first time. Whilst watching the instruction video, I saw one by a ENT specialist which showed that I'd been using Beconase wrong all these years.

Still somewhat concerned about the additional steroid load and after putting in a prescription request this morning the doctor who saw me rang. I'd ordered packs of 1mg Pred, and in the notes mentioned that I've tapered to 6.5. One doctor approved the request, but the other one wanted to know why I need Pred. He'd obviously forgotten I have PMR??

Since I'm getting no sense out of him, is there anyone on here know if using Beconase as well as oral steroids can have a bad effect? It doesn't seem to at the moment - usual insomnia problems as I've just tapered, but apart from that ok.

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PMRpro profile image
PMRproAmbassador

Two low doses of pred together is not really a problem. The beconase is mainly effective locally and not a lot is absorbed. As a parallel example - I have just had a local injection of steroid in my sacroiliac joint - the oral pred wasn't dealing with the problem, the injection has.

ladygigger profile image
ladygigger in reply to PMRpro

Thank you PMRpro - I thought you might know.

I thought I knew the answer, but wasn't sure. Hopefully your injection works: I had one in my hip last summer which did absolutely naff all to help my bursitis. I was told just to keep taking the co-codamol.

PMRpro profile image
PMRproAmbassador in reply to ladygigger

Needs a good doctor - Christian did a hip one some time ago that worked and had also done a sacroiliac joint one previously though not with u/s guidance as he did this week/ And yes, it has worked! Movement without pain has been such a pleasure this weekend!!! The other goody for hip bursitis is extracorporeal shock wave therapy - slower than an injection as you need 3 treatments, but it works!

ladygigger profile image
ladygigger in reply to PMRpro

I'm so glad to hear it. I've had about a 25% success rate - previously had steroid injections in one shoulder: the first two worked, the second two didn't - even when he used the extra long needle (that was a frightening sight!) I really wanted this one to work for my hip because it's just bursitis, it doesn't need replacing - but I walk like it does, that slight roll. I did exactly as I was told: rested for 2 days, on the third I was standing by the sink and literally felt it fall away. Shame, because the bruise was there for 3 weeks and when I removed the dressing I also removed several layers of skin (oh the joys of steroids...)

Blearyeyed profile image
Blearyeyed

Yes, I used Beconase while on steroids, no problems .I made the decision to make sure that the short inhaled treatment wasn't taken until a few hours after my oral steroids.

My question would be why was this the only medication for your symptoms.

After 10days with little effect I would say that your ear and nose isn't enough to deal with the type of ear and eye inflammation you are suffering from . They usually suggest 3-7 days is enough if an indicator for that type of illness and treatment.

Sounds like you need to go back and have it checked again you may still need antiviral or antibiotic medication , eye and ear drops or a proper check via ENT, especially as your initial ear condition happened because of a flight.

Maybe you could request a different GP at your surgery.

Hope you feel better soon, Bee

Indigo2417 profile image
Indigo2417

Interested to see your post today. I’ve been using Beconase for allergic rhinitis for a long time. Last week I asked for my usual repeat prescription and was told I needed to make an appointment for a routine consultation with GP about it. Our surgery is run with locum GPs so the one who gave me the Beconase originally has gone. GP I spoke to on the phone yesterday said it’s not good to use it all the time as it can damage the lining of the nose and cause nose to be runny. Has advised me to do nasal washing and only use the Beconase when necessary. A bit puzzling as I’m allergic things all year round. I’m currently on 8mg of Pred and he asked how long I’d been on it. Told him I’d started on 15mg in September and tapered down to 8mg two weeks ago. He asked if I was going to go down to 7 next time, so I told him I’m going to do 7.5 after 4 weeks on 8. He seemed keen on me dropping down, but I stuck to saying 7.5 and he didn’t make a fuss, so I was pleased about that. Don’t know what I’m going to do about the rhinitis though.

PMRpro profile image
PMRproAmbassador in reply to Indigo2417

If you are allergic to things all year round, then possibly an antihistamine would make more sense. Local use of sprays tends to result in the development of a rebound effect and the runny nose.

Well done on standing your ground on the taper!!

Indigo2417 profile image
Indigo2417 in reply to PMRpro

Thanks, PMR Pro. I’ve had problems with catarrh and sinusitis for as long as I can remember. Then developed hay fever when I was about 20. Was put on antihistamine tablets during the hay fever season, but they were stopped years ago. Then I started getting sneezing fits at random times, lasting around 5-10 minutes. They seem to sometimes be triggered by strong scents from perfume or cleaning sprays or pollen or dust/ fibres ( not that we ever have any dust in our house- ha ha). Completely unpredictable, but they upset my sinuses. That’s why the GP gave me Beconase several years ago. Would I be better off having antihistamine tablets? I have previously tried Sterimar spray for my sinus problems. With reference to the tapering, I’d already decided to slow down from 1mg per 4 weeks to half a mg this time, but I badly strained my back last week and had muscle spasms over the weekend. It’s been very painful, hence call to the GP. He’s given me 250mg Naproxen. I told him I’ve got PMR and am on Lansoprazole 15mg and that’s when he asked about my Pred. Its been a particularly fraught week, so I’m going to see how things go. If I don’t feel confident, I’m going to stick on 8mg for another week and drop to 7.5 later. Thanks for the knowledgeable advice.

PS. I’m due for my second shingles jab tomorrow and I don’t want to postpone it unless its absolutely necessary, because I pushed to get them in the first place.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Indigo2417

Suggest you stay at 8mg for a could more weeks…get over this week and your vaccination…

PMRpro profile image
PMRproAmbassador in reply to Indigo2417

How long since the last one? You have from 2 to 6 months so delaying the second if you aren't well is sensible.

Have you tried heat on the strained back? Works wonders for me together with a good dose (800mg) ibuprofen, sitting upright with a hot water bottle over the sore bit for a few hours - not an instant remedy though.

Indigo2417 profile image
Indigo2417 in reply to PMRpro

Have got an electric heat pad and that has been very good. Took some paracetamol over the weekend, but not all the time. I’m wary of a withdrawal headache. Getting in an out of bed at night was a nightmare, so I resorted to 8/500 Co-codamol, just at bedtime Saturday and Sunday. Wasn’t sure if I could take Ibuprofen so asked the GP, but he gave me Naproxen and told me to use ibuprofen gel as well. It does feel a bit better today and in and out of bed wasn’t as bad. It hasn’t been helped by having to get up for the loo 3 times a night either, but I daren’t make myself wait in case there was an accident. Hopefully I’m over the worst now. Just need to be careful.

First shingles jab was November.

PMRpro profile image
PMRproAmbassador in reply to Indigo2417

It NEEDS some antiinflammatory effect - Naproxen may do the job but it is prescription-only. Occasional use of ibuprofen is generally OK, if you need it any more you need to take it with a PPI. I find paracetamol useless! Unless it is i,v, when it IS good.

Indigo2417 profile image
Indigo2417 in reply to PMRpro

Am on Lansoprazole 15mg daily anyway. Paracetamol didn’t have a great effect, but I wasn’t sure about the ibuprofen, so asked the doc yesterday. Didn’t like taking the co-codamol at night but it was a last resort.

Indigo2417 profile image
Indigo2417 in reply to PMRpro

Common sense has prevailed and I postponed my appointment for my second jab for another 2.5 weeks.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Indigo2417

Good idea

Indigo2417 profile image
Indigo2417 in reply to DorsetLady

Practicality really. I didn’t think I’d be able to get in and out of the car, plus being jolted on bumpy roads.

ladygigger profile image
ladygigger in reply to Indigo2417

My partner wasn't keen on Beconase and preferred Otrivine. Our surgery has stopped prescribing nasal sprays due to cost, like anti histamines and co codamol or paracetamol. He saw that he could order Otrivine on a regular basis from Amazon so had set up for a bottle to come every 6 weeks or so. This was when I was looking at the Neti pots and whilst watching an instruction video for that saw a post by an ENT specialist in London so watched it. According to him, constant use of Beconase/steroid sprays can decrease in efficiency and he recommended Pirinase which, although still a steroid, is a much lower dose and doesn't stop working with continued use. It was a fascinating video - I'd always been told to sniff after using Beconase and apparently that's incorrect.

For anyone new to Beconase or other inhalers, apparently this is the way to use it:

youtu.be/LOhmsn4gQMM?si=Oq1...

Indigo2417 profile image
Indigo2417 in reply to ladygigger

Thanks for the info. I’ll have a look at the video. I think our surgery is on a cost cutting drive too. Someone mentioned a Netipot to me some while back, but I didn’t pursue it at the time. It seemed like a bit of a faff. I have used Sterimar to wash my nose out in the past. I think you can get one for sinusitis and one for hay fever. I think it might be a bit expensive for daily use. Don’t know how much they are now as I haven’t used one for a long time. Thanks again for the information. Hope you get your problem resolved soon.

ladygigger profile image
ladygigger in reply to Indigo2417

My daughter is a huge fan of the Netipot and I have tried it this past couple of days. It's similar to Sterimar - just more, much more. My partner has used Sterimar for a long time (again, on the recommendation of my daughter). The Netipot takes some getting used to and considering that I never had much of a runny nose with this last cold there's an awful lot coming out! Getting into position isn't easy with PMR, but once there I'm generally ok.

Indigo2417 profile image
Indigo2417 in reply to ladygigger

Am investigating all possibilities. Have just read an article on an American website where the expert says you can get rebound congestion ( as mentioned by PMRpro) after using nasal decongestant sprays for more than 3 days. He says if you’ve been using them for a long time you should taper off use gradually to avoid getting headaches, and use a saline spray in conjunction. Says it can take about a week to completely come off.

BonnieMisha profile image
BonnieMisha

Hi can I help with ear not popping. I had this a few weeks ago. Looked at Dr Google and discovered something called glue/sticky ear. I kid you not. An infection enters the eustacion tube and traps the ear drum in concave position. Apparabtly the official i.e. medical consultantancy solution is to use a kit to blow up a nasal balloon through a nose piece. I also used a saline nasal rinse to clear the sinuses and oil in the ear to keep the eardrum soft. The nasal balloons are sold under the name otovent and are available on Amazon. It worked.

ladygigger profile image
ladygigger in reply to BonnieMisha

Funnily enough I had thought of glue ear because my son suffered with it as a child, eventually having the operation to insert a grommet to drain the ear. Before the operation we spent literally hours steaming with him and then using a party blower - those things that you had at kid's parties where you blew in a tube and a piece of paper unfurled and made a noise but for him he had to put it in his nose. I think I might still have some around from when my grandchildren were over so will have a look. Thank you!

ladygigger profile image
ladygigger

Thank you for all the replies - great food for thought here. I'll definitely be trying the nasal balloon idea and if that doesn't work will be going back to the surgery as I'm getting bored with popping ears now!

AtopicGuy profile image
AtopicGuy

As a result of atopy, I have been using steroid nasal sprays, ointments and inhalers for decades. They bring great relief to my allergic symptoms: so much so that I took up sports that were previously impossible. Sadly, they have no noticeable effect on my PMR symptoms, unlike a few mg of oral prednisolone. This is no surprise, as topical steroids are not designed to pass from local tissues into the bloodstream in any significant quantity. Once you've cleared a permanently blocked eustachian tube, there's no looking back!

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