Myositis UK

Challenges with Polymyositis and possible lung damage scarring

Hello, my dad has been diagnosed with polymyositis and as an affect of the medicines he has been taking his lungs have been damaged with scarring (pulmonary fibrosis) and has a terrible cough. He has tried some corticosteriod drip but only had it once and suffered very bad backache as a result. His consultant says he must take it what can he do as he is having side effects. Also, does anyone know whether taking alcohol can make the condition worse? Any advice on how individuals cope would be appreciated.

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Was your Dad on Methotrexate treatment? If not it's more likely it is the Myositis has caused his lung issues and would need aggressive treatment, and it may be wise to have a second opinion with a Myositis specialist. Where does your Father live and I can advise the nearest.

Alcohol can cause adverse effects with some medications, so some caution is needed, but as long as it's in moderation he should be fine.

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Hello Jo, thanks for your reply. We are based in Southampton. He is on a number of medicines:

CellCept 500mg (Mycophenolate mofetil)

Risedronate sodium film coated tablets

Prednisolone tablets

Omeprazole Gastro-resistant capsules

Calcium Carbonate

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The charity is based in Southampton.

500mg of Mycophenolate is a low amount, do they plan to increase? Normally the dose would around 2000mg and can go up to 3000mg. It can take 3 to 6 months to be fully effective.

The nearest specialist Myositis centre is Kings College London. Dr Patrick Gordon leads the team and a referral for a NHS second to him can be requested via your father's GP. You can still attend at Southampton if you wish, some patients have shared care; with a specialist Myositis clinic and their local hospital.

The NHS referral appointment is likely to take 3 months, but it's possible to have a one off private appointment at Kings private with Dr Gordon in around 7-10 days and he could then write to your father's GP requesting the GP to start the NHS referral process. A private consultation is around £200.

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