Breathless and feeling off. PMR symptom? Also coated Prednisolone with omeprazole.

[Ebiker]

Three years in and managed to reduce to 7.5 mg of prednisolone, using very slow drops of 0.5 over several weeks. I have had some stiffness after using muscles and other occasional symptoms but otherwise fine since starting the drop after a holiday in November. I had 10 days of sunshine in Malta and was back to my normal energetic self. I was on 8mg at the time.

A few days ago I started to feel breathless when walking up hill and that has worsened. Today I was out of breath washing my hair and even trying to have a conversation causes breathlessness. As I have a slight chesty cough and sound a bit throaty I took LFT tests and thankfully they were negative.

Could this be a PMR symptom or a bug, worsened by the fact I filled the living room with burning perfumed fumes a couple of days ago? (spilled the melted contents of a scented candle tin onto the hot stove!!) Well we do have some unusual ways of celebrating New Year here in the north of England, but that is not one of them.🤣.

Also after reading recent post about omeprazole with coated predisolene each morning, I am now wondering what to change there.

I had awful reflux and digestive problems before PMR but managed with very careful diet and gaviscon for many months with prednisolene, but I finally had to take omeprazole, 10mg daily. I have tried reducing it to 2 out of 3 days but without success. I drink kefir a couple of times a day and have yogurt with evening meal. I avoid processed foods and fat content, sugar etc. All this just about keeps the lid on the digestive problems.

Reading the experiences of others and the replies from contributors is a lifeline for us. Many thanks in advance for your thoughts and let us all look forward positively to 2022.

[PMRpro Ambassador]

Breathlessness to that degree requires a medical opinion and asap. If you can't see a doctor today - and I assume you can't, it is a BH isn't it in the UK? - then start by calling 111 (or 999 if it gets any worse) or go to an A&E if you have transport. If you can't talk without being breathless that classes as difficulty in breathing and is a red flag symptom. It may only be a chest infection - but a negative LFT doesn't rule out Covid I fear, just makes it less likely. It is being reported that there are a lot of false negatives.

[Ebiker in reply to PMRpro]

Thanks PMR pro.

[Ebiker in reply to PMRpro]

Thanks Dorset lady. I have a PCR test kit I can use also. I have tried calling 111 and will continue to do so.

I do know that there are a number of people in our area with chesty coughs and other flu like symptoms and I was near one last week but apart from a slight headache I do not have any other symptoms.

[SnazzyD in reply to Ebiker]

The number 1 symptom as reported by the ZOE app is headache and snuffles. Also, with Covid breathing problems can present a week or more later.

[Ebiker in reply to SnazzyD]

Hi SnazzyD. In case you have missed my follow up from original, I ended up passing out and 999 off to hospital. This is a copy of the result.... a pulmonary embolism. Comment from emergency doctor in A&E- one lucky lady.Back home, tired but I am getting well spoiled and looked after.

Discharged after 48hrs and will have follow up in 4 weeks. Doctor found a thickening in breast so ordered a fast track mammogram. Heart took a bit of strain apparently so maybe further scan.

Hey ho bit more to worry about but we have a wonderful health care system here and a tip top PMR forum. Your responses probably saved my life.

Many thanks for your input.

[SnazzyD in reply to Ebiker]

😮 Yes, it certainly wasn’t going to be nothing! Thanks so much for bothering to reply to get me to see the update. Much appreciated.

[Iamfedup in reply to Ebiker]

You can test negative one day and positive the next, I did. Keep taking the tests as the you can have Covid in your system for five days before it shows on a test

[DorsetLady PMRGCAuk volunteer]

Ditto to PMRpro comments, and don’t necessarily rule out covid completely - LFT are not 100% accurate…maybe do another before you ring 111…things can change within hours with Omicron.

[Blearyeyed]

As above , contact 111 , you really do need to have this checked out . Don't forget to explain to them that you have PMR and are already on steroid medication and are in a vulnerable patient category. It may even be worth checking if they have the option in your area to have a mobile doctor or ambulance sent to your home to do a PCR test on you , or at the least you should get an appointment at a testing centre for a PCR which prevents the delays for results using the post.

Breathlessness can be being caused by anything from an infection of any kind to an allergic reaction to your candles or a symptom of some other underlying condition , and it is one of the symptoms that should be taken seriously.

In the meantime , look up the breathing exercise technique on the internet which is used to help people with Covid , this breathing technique used through the day is beneficial in recovery from other lung related infections and conditions as well so it might help ease your current symptoms.

In relation to your Pred and PPI concerns I would suggest not worrying about those so much right now and concentrate on getting help for your immediate medical problem. If you find your digestive symptoms get worse when you reduce your PPI you probably are one of those people whom needs to take it.

Let us know how you get on and take care , Bee

[Ebiker in reply to Blearyeyed]

Thanks for your post Blearyeyed. I am still ringing 111...line went dead last time. Meanwhile I have a telephone appointment with my GP in the morning. We have a terrific Health Centre here. My GP knows me well and is happy to go along with me dropping dose when I feel it is right. Also I have a priority Covid test. I will register it, do it today and post it in the morning.

Apart from the headache I am not feeling ill and so staying in bed. I have someone to look after me!

[SnazzyD in reply to Ebiker]

Did they not do a Covid test in hospital? Pulmonary thrombosis is a Covid thing too. Wishing you a speedy recovery.

[Ebiker in reply to SnazzyD]

They did covid test each day...all negative fortunately.

[SnazzyD]

Agree with Pro, that of breath while trying to speak is a red flag and should be enough for any medic to see you urgently. Could be cardiac, lungs, large vessel inflammation, all sorts. Also, LFT’s are not reliable enough to shrug off symptoms like that as not Covid either. My father-in-law had LFT’s every day at his care home even tested negative when he collapsed not being able to breathe last Friday. PCR positive in the hospital Covid ward by evening.

[Ebiker in reply to SnazzyD]

Thanks SnazzyD. The breathing is not improving. Will look at breathing exercise technique as mentioned by Blearyeyed and will do PCR test today. Speaking to my GP on the morning is probably the best route as the team there are brilliant when it comes to fast further action. We are so lucky here.

[Billiebobdog]

Isn’t a change in voice also one of the new symptoms for the Omicron variant?

[Ebiker in reply to Billiebobdog]

Interesting. I do have a throaty change of voice today. I have just finished the call to 111, after more than 2 hours waiting. First (after 1 hour wait) took details and transferred me for a further hour wait to another clinician who then transferred me to someone with more knowledge as I needed assessment.

She felt I needed further assessment and asked about hospitals near. I explained that I have an appt on telephone in morning with my GP and I know they would give me an urgent examination or get an urgent appoinment in local hospital if the necessary. Meanwhile the 111 assessor has suggested that it would be sensible to have the out of hours service ring me. I am waiting the call.

They are all so desperately busy so I feel that is a good solution.

[Ebiker]

Thanks yo PMR pro, Dorset lady and all others. You were correct and I shpuld have gone straight 999 route rather than spend the day going through all the 111 long waits and 3 to 4 levels. Jumping ahead, passed out first minutes out of bed and ended up with neighbours (retired doctor and nurse), two local Responders I happen to know, and the ambulance crew.

I was brought straight to hospital on oxygen and now after some 8 hours and every test imaginable from s team of wonderful NHS staff I am waiting for a bed on ward.

Diagnosis...pulmonary thrombosis both lungs and lucky I got here. More medication to thin later.

They are giving me so much attention in these terribly difficult times for the NHS.

Again many thanks .

So, so lucky.

[PMRpro Ambassador in reply to Ebiker]

I'm sorry - I did wonder if it could be that and was going to ask more questions but didn't. Did you have any chest pain? I won't worry about scaring someone next time!

They appreciate the patient who is proper poorly - beats a spitting drunk any day! That is why they get up in the morning and are there.

Get well soon

[Ebiker in reply to PMRpro]

Thanks No chest pain, no pain anywhere, only headache and breathlessness.

That is why they have done so many tests as puzzling.

Will keep you updated.

Will my reply to you be seen by the others?

[PMRpro Ambassador in reply to Ebiker]

Not necessarily - they won't get a notification unless they followed the thread.

I think I sort of assumed you would have mentioned chest pain if you had it - and it is usual. But they do enjoy a challenge - my daughter had one the other day that was really puzzling but her suspicions were closer than one of the doctors and she arranged for the right tests to be ordered - which made the doctors jump when they got the results. It is so satisfying when they hear the outcomes too.

[Ebiker in reply to PMRpro]

Back home, tired but I am getting well spoiled and looked after.Discharged after 48hrs and will have follow up in 4 weeks. Doctor found a thickening in breast so ordered a fast track mammogram. Heart took a bit of strsin apparently so maybe further scan.

Hey ho bit more to worry about but we have a wonderful health care system here and a tip top PMR forum. Your responses probably saved my life.

[DorsetLady PMRGCAuk volunteer in reply to Ebiker]

I’ve seen it thanks -like PMRpro I follow all posts - but most don’t.

[SnazzyD in reply to Ebiker]

My sister had multiple small thromboses in her lung arteries and she had no symptoms that she noticed other than slowly running out of puff until one day she collapsed. No chest pain, not even a headache, nothing. One thing that was noted once the cat was out of the bag was a raised large blood vessel in her neck when one thought to look at it.