PCD Family Support Group (UK)
304 members152 posts

Joint pains

Hi I am 52 years old finally diagnosed with PCD after persisting for 26 years to get a diagnosis!

I have been colonised with pseudomonnas for many years due to this I have really problematic joint pains along with stiffness and swelling. The rheumatologist thinks its reactive arthritis from the pseudomonas on my lungs. I am really struggling with drug therapy that I can tolerate. Unfortunately I have been on NSAID's for many years and now unable to tolerate as I have begun to aspirate from refluxing on a night despite maximum antireflux drug therapy, omeprazole, ranitidine and sulcrafate.

I would be very interested to hear if anyone else has problematic joints and what drug therapy you have found beneficial. The next group of drugs I really need to take are immunosuppressants which really is not ideal given that I have extensive bronchiectasis.

Many thanks in advance


4 Replies

Sorry to hear your dilemma, thankfully joint pain is not something I suffer with, so I am hoping someone else on here may be able to help you.

It is not something I have heard spoken about particularly by other people with PCD that I know.

Wishing you well.

1 like

Many thanks for your reply Terry very much appreciated. That's interesting as my CF team see this with their patients and think I must have an arthralgia because of the pseudomonas I am seeing the rheumatologist next week so will discuss maybe looking at other causes. Although I know it is definitely linked to my chest and exacerbations. It started following colonisation of the pseudo following the birth of my daughter.

Best wishes Dianne


Hi there, I'm 31 and have just had a diagnosis of PCD from the Royal brompton. Do you know which mutation you have? I have DNAH11 and I have suffered with shoulder pain and swelling for years. I put it down to sports injury but now I'm convinced it's linked to infections. I am currently not on any treatment so I cannot advise you in any, do you have any advice? Do you get shoulder pain?

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Hi Grace it's a little complicated regarding the genetic mutation I may have. I have had a very long complex journey trying to get a diagnosis of PCD. Having had a diagnosis and then not a diagnosis has been very frustrating! I had genetic testing undertaken in America for 32 of the PCD genes it showed I had 1 mutation in the DNAH11 gene which is the one I think I have as I have a very high ciliary beat frequency along with hyperkinetic and static cilia which are known to be caused by a mutation in this particular gene. You need 2 to cause PCD. In view of this I have just had bloods taken for the 100K Genome Project. It's probably going to take a year to get the results!

Yes I have very problematic shoulders although initially it was my wrists. Most of my joints are affected if I do not take antinflammatory therapy. Before I started drug therapy the pain stiffness and swelling were definitely related to when I had an exacerbation with my chest. Have you discussed this with the team at the Brompton?

Best wishes



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