Joint pains

[dmacheta1]

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

Dianne

[TerryBun Administrator]

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.

[dmacheta1 in reply to TerryBun]

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

[Grace9614]

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?

[dmacheta1 in reply to Grace9614]

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

Dianne