Still very breathless. : Hi everyone Feeling very... - PMRGCAuk

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Still very breathless.

Daisymaud profile image
16 Replies

Hi everyone

Feeling very worried as the breathlessness I was experiencing walking upstairs seems to be extending to any sort of activity other than sitting down. I’m still on 20mg of prednisolone until my review in 2 weeks. I’ve been resting a lot more and find I keep dozing off!

On the positive side I’m not in pain and the tooth extraction went well and my gum is healing ok.

Hope you lovely people are keeping warm and safe.

Blessings x

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Daisymaud profile image
Daisymaud
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16 Replies
PMRpro profile image
PMRproAmbassador

You have discussed it with the doctors? As I just said somewhere else - you can't always blame PMR and pred.

123-go profile image
123-go

Hi Daisymaud. I suggest that you contact your GP in the morning to discuss the breathlessness as it's worrying you. I'm pleased to hear that the tooth extraction went well.

SheffieldJane profile image
SheffieldJane

I was worried about random attacks of breathlessness. My Rheumatologist arranged for me to have an MRA scan of my heart as I have GCA/LVV and it can effect the Aortic Artery. This was all clear, but I have to return for my arms to be scanned, they forgot! She also asked my GP to arrange for a referral to a local Cardiologist, who has made contact with me already and wants me to wear a 24 hour heart monitor. Not sure if I need to do this now, he did say the MRA was the gold standard test.She has suggested that the long-term Prednisalone effect of muscle weakness may have impacted on my chest muscles. Exercise is helpful, such as walking and breathing consciously. I also know that I have been far too sedentary of late, due to general malaise and feeling unwell - I have to combat this and get moving again. My symptom of breathlessness is much less now. It used to be accompanied by a doomy feeling. I would sleep propped up with a fan blowing in my face. Now I know that there is no organic problem, I need to get my Fitbit out again. My Pred dose is 8 mgs.

Noosat profile image
Noosat in reply to SheffieldJane

If you do have an aortic valve problem it is curable. One year ago, I had TAVR surgery, where the valve is replaced by going through an artery in the groin. Now I do not huff and puff going up small hills . Am just slow because of stiff, slow legs The cardiologist recommended the procedure for quality of life, not longevity. After 3 years of PMR I am finally going to see a rheumatologist this afternoon. My GP had been handling it but I have changed to another GP who wants me to go to the rheumi. This pleases me.

SheffieldJane profile image
SheffieldJane in reply to Noosat

Thank you for this Noosat. Good luck with your new Rheumatologist.

Pixix profile image
Pixix

Glad to hear your tooth extraction went OK, & gum is healing well! I’m still waiting for my hospital appointment to have mine removed! I’m dreading it, but know it needs to be done! Re breathlessness, I truly think that’s one for the doctor…oh, as I see others have said! Good luck!

VicSat profile image
VicSat in reply to Pixix

My dentist has removed 9 upper teeth (2 or 3 at a time) following the end of my course of prednisolone for GCA. He said they are disintegrating as a result of my taking heavy doses of the steroid. Two more will be extracted in December and a new denture fitted.

Pixix profile image
Pixix in reply to VicSat

Oh, that’s awful, I’m so sorry. My tooth is heavily filled & that’s why it may all crumble when she tries to extract it, she said. I guess I will find out more at the hospital, but no idea when I will get a date to have it done! No toothache this week, though!

Tonylynn profile image
Tonylynn in reply to Pixix

When a dentist extracts a tooth the forceps are pushed as far down the root as possible in order to ensure maximum purchase on the tooth / root. It is not unusual for the crown to fracture if the tooth is heavily restored but this does not prevent a successful extraction. Thankfully extractions are less common than was the case and this means dental surgeons(!) get less training and experience in removing teeth and so all too often take the easy option and just refer to hospital. Unfortunately this often means a long wait for an appointment and the risk of pain and infection in the meantime.

Tonylynn profile image
Tonylynn in reply to VicSat

Why on earth would Prednisolone cause teeth to disintegrate. I can find NOTHING in the literature to suggest this is the case. My wife had GCA and was initially on 60 mg and after four years is now on 4 mg and her teeth are as good as they were at the start (although heavily filled and crowned and unchanged in over five years). Perhaps you should ask your dentist what mechanism he thinks is causing prednisolone to be responsible!

Pixix profile image
Pixix in reply to Tonylynn

Maybe…but she was concerned about my current medical condition…I have more than PMR going on right now, & would prefer me to be safe rather than she starts, I get into a problem which she can’t do anything about, other than call an ambulance & wait. Seems fair to me. She showed me the x-Ray & explained, plus the filling is over 40 years old! If I get pain, I can ring her & get an appointment with her, same day.

PMRpro profile image
PMRproAmbassador in reply to Tonylynn

Thanks Tony - I've been asking that too. My teeth haven't changed at all, nor the gums. I suspect either the vasculitis part or the pred encourages gum problems though, especially if the oral hygiene isn't good.

Tonylynn profile image
Tonylynn in reply to PMRpro

There is some evidence that Prednisolone can have an effect on the "gums" but any increased inflammation should be apparent to a dentist and it is only a question of bringing this to the attention of the patient and showing how to improve the oral hygiene. If gums bleed then they need to be brushed more .. not less!!!! Steroids are not going to cause tooth loss but perhaps in someone with already advanced periodontal (gum) disease the loss might occur a little earlier. A dentist needs to know if a patient is taking steroids and at what dose as (believe it or not) certain procedures are stressful and the advice is usually to INCREASE the dosage before and after such a procedure (such as tooth extraction). Given that the adrenals are usually compromised the body may not produce the "fight or flight" response to stress and a booster is needed to mimic the normal response. Perhaps a failure to implement this regime accounts for some of the symptoms seen following stressful events.

PMRpro profile image
PMRproAmbassador in reply to Tonylynn

Oh I know all that - though we did have a patient recently who thought they were being told to take 100mg pred before and extraction! The script was - as I suspected - for hydrocortisone! I wonder if the new steroid card they introduced last year was in response to dental issues?

But we have also had several patients who were told by their dentists that the broken teeth were due to pred. Given the experience of my cousin whose dentist hadn't bothered to tell her about the gum disease so she could take appropriate measures and now is threatened with losing a lot of very wobbly teeth I do get very sceptical ...

Tonylynn profile image
Tonylynn

I hope you have read and thoroughly understood both these articles. Neither suggests any reason why teeth should “disintegrate”. Much is about inhaled steroids which does not relate to PMR or GCA and anything concerning dentine formation is totally irrelevant as dentine formation is minimal in the age group associated with these conditions.

Tonylynn profile image
Tonylynn

A recent and good quality review of the literature in the European Journal of Dentistry (thieme-connect.com/.../s-00... entitled "Corticosteroid Use and Periodontal Disease: A Systematic Review" has in the discussion "The present review evidenced that there are few studies with appropriate methodology to produce sound evidence about the causal relationship between the use of corticosteroids and periodontitis".

So... there is little or no evidence to suggest systemic steroids (as opposed to inhaled) have any effect of dental caries (tooth decay) or periodontal (gum) disease.

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