PMR/GCA and COPD: For many years I have felt slight... - PMRGCAuk

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PMR/GCA and COPD

Janann25 profile image
16 Replies

For many years I have felt slight wheezy during the autumn months but not enough to affect my normal activities so just put it down to a seasonal allergy. However, in January 2017 I had a chest infection which required antibiotics and, when the doctor checked me over once the course was finished, she said that my chest was clear but she could hear slight wheezing and wanted me to have a lung function test. I had this done a few weeks later and was told the wheezing had gone and all was normal.

So, we now go to May 2017 when I was diagnosed with PMR and subsequently possible GCA a few weeks later. I then spent months on a mixture of 40 and 35mg Pred until I was told in February of this year that my "symptoms " were in fact side effects of the Pred and was able to start reducing very slowly. However, ever since the PMR diagnosis almost a year ago, I have been breathless and the wheezing has been worse but I put it down to the side effects of the high doses of Pred. Then, in February of this year I had another chest infection and because once again my chest is clear but the wheezing hasn't gone, I had to have another lung function test - but this time it came back showing a marked deterioration in my lung function and I'm now waiting for an appointment at the chest clinic.

So, what I'm asking is whether anyone else has experienced this? Is this likely to be a side effect of the heavy Pred doses or could it actually be caused by the PMR itself? The irony is that, as many of you may know, Pred is prescribed to help with the treatment of COPD but now I'm wondering whether the Pred has actually caused this.

I'd really appreciate any advice or insights into other people's experience.

Many Thanks

Jan

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Janann25
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16 Replies
Grants148 profile image
Grants148

Hi janann,l suffer with asthma and it is usually worse when l get a cold or flu virus,but since taking the prednisolone l have not had to use my inhalers very often and l can even get through a cold without rushing to the doctors with breathing problems.I was given preds when l did have a nasty asthma attack before l had PMG.l can see from your post that you already know that the steroids are prescribed forCOPD and it does seem strange if they are causing your lung problem,l always understood that steroids strengthen the lungs.l hope that your appointment with the chest clinic will help to find out what is affecting your lungs. Good luck,let us know how you get on.

Janann25 profile image
Janann25 in reply to Grants148

Thank you so much for you reply. Yes, I'm finding it all very confusing, especially as just a year ago, before my diagnosis, my lungs were clear. I shall be pleased when my appointment comes through, then hopefully I will know what is happening. I'm trying not to think of what else could be happening with my lungs 😟

Jan

SnazzyD profile image
SnazzyD

Hello, I’m pretty sure I’ve read posts on this forum about people seemingly getting breathlessness with Pred. Might be worth a search.

Janann25 profile image
Janann25 in reply to SnazzyD

Thanks for your reply. Yes, I’ve spent quite a lot of time searching more info but, apart from the occasional incidence of breathlessness being mentionrd, on the whole Dr Google says that Pred helps the lungs. Trust me to be the exception to the rule 😉

Jan

SnazzyD profile image
SnazzyD in reply to Janann25

Try searching ‘breathless’ I’m the top right on this forum.

Janann25 profile image
Janann25 in reply to SnazzyD

I'm so sorry to be a bit dense - blame Pred Head! - but what do you mean by "top right on this forum"?

SnazzyD profile image
SnazzyD in reply to Janann25

Blame it on the Pred, it’s one good thing about it! Anyway, if you look at the top of the page, there is a narrow box with “Search PMRGCAuk” on it. Type “breathless” in there and hit Return key and you should get posts that had that word in the title.

SheffieldJane profile image
SheffieldJane

Breathlessness is a symptom that I associate with PMR. I don’t experience it all the time and it’s not a symptom that I have highlighted to the doctor much. I can hear a “ whistle” in my lungs sometimes. I don’t think things are helped by being much less active and in my case heavier.. I would be interested to hear how you get on after all the tests etc and what treatment if any is prescribed. You may find that it is not linked with your GCA. Good Luck!

Janann25 profile image
Janann25 in reply to SheffieldJane

Thanks for your good wishes. Yes, one of the things I’ve found most difficult during my “journey” is knowing what are symptoms of the illness and what are side effects of the Pred. Of course, things aren’t helped by me now getting a rather nasty chest infection so tomorrow I’ll be queuing up outside the doctors at 8.30 to try to get an appointment. Deep joy!!!

SheffieldJane profile image
SheffieldJane

What an absurd system to get a GP appointment! Good luck, poor you.

Janann25 profile image
Janann25 in reply to SheffieldJane

You couldn't make it up, could you!

PMRpro profile image
PMRproAmbassador

If they have evidence of poor lung function it is more likely to be COPD than the pred I'd have thought.

But why were you on 35/40 mg pred for months?

Janann25 profile image
Janann25 in reply to PMRpro

Because my previous rheumatologist kept saying I had symptoms of GCA - she's not my rheumatologist any more! But I saw Dr Rod Hughes at the beginning of February (worth every penny ) and he explained that what I'd been experiencing was in fact side effects of the Pred and I'm now reducing slowly - but so far successfully - to 14mg Pred.

stellafmdm profile image
stellafmdm

I was diagnosed with PMR in 2016 but have had Asthma for a long time before that until suddenly in 2017 I was told I had COPD. When I queried it I was told that to call it COPD made it easier to treat! It seems to have improved of late, I suppose because of the Pred and I've now been given a much stronger inhaler which is great for the lungs but rubbish for my voice!! I doubt if pred could cause COPD as it is a treatment rather than a cause. and I put down my improvement to the Pred even before they started calling it COPD. I would think that your wheezing is a result of the chest infections and maybe you now have Asthma too?? Why don't you ask to see the respiratory nurse at your practice, they are often much better clued in than the GPs

Janann25 profile image
Janann25 in reply to stellafmdm

Thank you for your reply. I saw the respiratory nurse when I had the lung function test and she said that the spirometory test indicated possibly COPD. She spoke later that day to a doctor in the practice who arranged for an appointment at a chest clinic. Still not heard when that will be. Apart from the seasonal wheezing, Ive never had lung problems but age is inclined to bring changes!!!

stellafmdm profile image
stellafmdm

Good luck Janann25, I hope the appointment goes well and answers all your questions!

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