Steroids

[Pennythedug]

Hi I have had PMR about three years now and was officially diagnosed two years ago and on 20mg reducing to 7mg with some ups and downs (flares). I am also on methotrexate to support taper. I recently found this site and find it very helpful and would like to know whether any of you have heard of a connection between taking steroids and pulmonary fibrosis.

[SheffieldJane]

Hello Pennythedug and welcome to the site. I am glad you have already found it helpful. There is some information on the Internet about a link between anabolic steroids and pulmonary embolism. There also seems to have been an inconclusive study in 2016 about a possible link between cortisoid treatment for inflammatory diseases and PE. It simply said that a significant percentage of patients in their study who were on drugs like Prednisalone had experienced PE but they were unable to prove that it wasn’t due to the underlying disease and further research was needed. It is not something that I am aware of. Why do you ask?

[Pennythedug in reply to SheffieldJane]

Thank you for your information it is very helpful. I was asking because I have been diagnosed with very mild pulmonary fibrosis before I started on methotrexate. So I know it wasn’t that but now that I think about it,I am now wondering if it might make it worse!! I hope everyone had a good Mother’s Day and not too stressed

[PMRpro Ambassador]

Steroids do not lead to pulmonary fibrosis - but using methotrexate, even at low doses, can.

uptodate.com/contents/metho...

arthritisresearchuk.org/hea...

(the second is easier to read for laypeople)

[Bj2016 in reply to PMRpro]

I was prescribed methotrexate at the rheumatology clinic a few months after diagnosis with PMR. The rheumatology nurse told me that the doctor had prescribed it and gave me the instructions about folic acid etc. I asked for more information and she said there might be side effects but I would be fine unless I had contraindications such as a history of TB. I told her that I had had tuberculosis when I was a child. Off she went to speak to the consultant and she came back and said I should take it, so I did because I had faith in the doctor who had diagnosed my PMR.

I put on quite a bit of weight in the first few months on pred so I wasn't all that surprised that I became rather breathless. This just got worse though so eventually I phoned the helpline (you ring and leave your name and number and wait several days for them to ring you back.)

I told them the problem, when they finally called me and I had a call a coup!e of hours later to stop the MTX immediately. That was it, no further advice.

I have since discovered that I could have become very ill if I had continued to take it. I had read the patient information leaflet but I was OK because the doctor had been told my medical history, right?

Now, obviously, most people on MTX won't have my problem. Nor will they necessarily have any side effects. But if you have breathlessness after you have been taking it please tell your doctor. Read the information that PMRpro has provided. Your doctor doesn't know your body as well as you do and may not know your full medical history, and even if they do, may not give enough weight to something that happened years ago.

As they used to say on Hill Street Blues -- let's be careful out there!

[Pennythedug in reply to PMRpro]

Hi PMRpro

Thank you very much for such a speedy reply. I will study all of the information and try to remember it all! Do you think Methotrexate makes memory even worse? I feel as if my brain is even more scrambled than it was taking just Pred.

[PMRpro Ambassador in reply to Pennythedug]

Many people complain of brain fog with methotrexate, especially the day or two after taking it - and since PMR causes it and pred, adding in another drug that does it would seem likely to add to the problem!

arthritis.org/living-with-a...

[Zampalion in reply to Pennythedug]

I am getting over flu like symptoms stopped taking MTX past 3 weeks on advice from rheumatologist hope to continue next week so far have not had any problems with this drug I am down to 1mgs alternative days

[Hidden]

Hi,

Most cases of pulmonary fibrosis are “ idiopathic “, that is they don’t know what causes it.

Pulmonary fibrosis can also be caused by an underlying auto immune/ Rheumatological disease. Have you asked whether they think it’s connected to the PMR and is your Rheumy certain that you have PMR and not another disease?

[Pennythedug in reply to Hidden]

Thanks Keyes

When I asked the reply was that nobody

knew, so I am not much wiser!

I will try again at next rheumy visit.