Athritic pain and PCD

[Iram_sa]

Hi

I'm on prophylactic antibiotics (co-amoxiclav) and have been on them for over two years then take other rescue drugs when an infection flairs up.

Anyway one of the symptoms I used to have when I was getting an infection was joint pain mainly in my knees and sometimes ankles too.

It's been over a year now where I've had continuous joint pains, especially my knees which is really painful at times. Painkillers don't help sometimes but sometimes a hot water bottle helps.

I wanted to know if anyone knew if there was a link between PCD and arthritis? My consultant never seems surprised when I mention joint pains as a symptom but I've never asked him if there is a direct link and wondered if anyone knew and what they do that helps control the pain?

Thank you

Iram

[PCDalisonj]

Dear Iram

Are you sure it is arthritis ? Have you had appropriate investigation ? Maybe it is a bacterial cause as when you are ill the bacteria can get in your bloodstream ,strep in particular can cause HSP but symptoms are petecchaie and painful joints . Alison

[TerryBun Administrator]

Sorry to hear you are experiencing joint pain and it is now continuous. Fortunately it is not something I suffer with, although sometimes when I have a chest infection I will get pain in my hips, which the doctor told me is quite common, when you have an infection, for the reasons described above by Alison.

Joint pain can also be a side effect of certain medications, so it could possibly be that. I don't think it is particularly specific to having PCD, it is extremely common for many different reasons, in fact in our house, it's my husband that suffers with arthritis and he doesn't have PCD. He does have painkillers, prescribed by our GP, but doesn't the take them very often.

I hope you manage to find some form of pain relief that works for you.

[Mpmc]

Hi Iram, that is very interesting, our daughter also experiences strange joint pains at the outset of every infection. In fact sometimes she starts complaing a few days before the fevers or other infectious signs even start. Our gp dismissed it as irritable hip before, even though it can be in her hands feet knees or hips, and from what I've read this is usually a one off event, and not a regular occurrence. When she was in hospital last week we also asked about it, and they didn't have an answer either, just said aches & pains are a normal feature with many infections, and it's probably nothing specific. We're seeing her regular paediatrician next week, and I thought I'd mention it, as it does seem very odd.

[Iram_sa]

Thank you all for replying. I'm not sure if it's arthritis as such but the pain is very similar when I ask my relatives who do have it.

I have read somewhere before it could be as a result of antibiotics and considering I've been on them for such a problem my time it could be a reason.

When an infection flairs up they definitely get worse (as opposed to just appearing like they used to) so that could be due to bacteria and inflammation around joints caused by infection.

It's just unbearable at times as it's bad enough dealing with frequent infections but this is more difficult to deal with to be honest.

I'm not due to see my consultant for a while but I will ask and if I remember I will post answer here if it helps others.

Thanks again for you all for taking time to answer.

Iram

[dmacheta1]

Hi Iram

Sorry to hear you are having a tough time time with joint pain. I have had joint pains for many years. My CF team think it is beacause of being colonised with pseudomonas as this was at the same time that I started with problematic joints. It is something they see in patients with CF. If I have a course of oral steroids it works beautifully!! I was on an anti- inflammatory drug for many years which really helped but unfortunately I have to stop it because of all the reflux problems I experience. My symptoms are certainly worsened by any exacerbation I experience with my chest. I have been under the care of a rheumatologist who has been particularly helpful.

I have also asked this question to the group about joint symptoms with PCD but it appears unusual. Out of interest are you colonised with pseudomonas?

Best wishes

[Iram_sa in reply to dmacheta1]

Hello there!

Thanks for the reply.

I did have pseudomonas many many years ago and was hospitalised and treated for that.

But the joint pains have been continuous a great deal after and all results I've had since have shown other bugs but not pseudomonas.

But could the fact I did have it once be the reason I have pains?

I'm due to see professor Wilson next month and will ask him.

Will private message you soon!

Take care

[Iram_sa]

Hi all,

Just wanted to update you all in case anyone' else has issues and not sure.

I saw professor Wilson at royal Brompton and he said it's arthralgia and is very common with patients with bronchiectessis and will certainly occur during an infection.

I asked why I was getting it even when I didn't have infection and he said that it's possibly because of plugging so if that's making me unwell still then there is some bacteria still in me that's causing the pain. He has recommended I take salt treatment when I use my nebuliser to reduce the plugging.

I also asked if my antibiotics could be causing it esp as I'm on prophylactic as well others as part of a treatment plan and he said the ones I take are not associated with joint pains.

He said once I try the salt treatment and if that clears the plugging and I still have joint pains then I need to be referred to rheumatologist.

But bottom line is there is a link with patients who have PCD linked from bronchiectessis and arthralgia.

I knew there was a link but I just wasn't sure why it was continuous now but Prof Wilson has clarified it for me.

Treatment for it is normal anti inflammatory but I try not to take it as much as I get acid reflux!

The joys of PCD!

Have a lovely Easter weekend all of you

Iram x

[Hayleymariej1]

I get it in my knees most days and all my other joints when I'm really unwell and need IVs. In general some days the joint pain is worse than others.

I was told by my consultant that the bacteria I'm colonised with, is confused by the immune system with the cartilage in my joints - so the immune system tries to badger the cartilage, but doesn't actually damage it like arthritis would. Supposedly this leads to inflammation and hence the horrible joint pain.

I was offered steriod injections in my glute muscle once a month, but I didn't fancy that, so guess I'm stuck with it really!

Can I ask what "plugging" is?

Thanks

[Iram_sa in reply to Hayleymariej1]

Hi Hayley,

Thanks for your reply and I'm sorry you too suffer from joint pains. It's not nice 😔

Plugging I've been told by Professor Wilson is when airways are blocked or plugged up by trapped mucus that hasn't managed to clear away naturally or even through regular physio. My lower bases are where all the plugging is happening.

Hope I've made sense there?

Iram 😊

[Morrison10 in reply to Iram_sa]

Hi Iram,

I’m fairly new to PCD family support, even though I am 84 and have suffered all my life from the effects, including doing my own injected antibiotics for two and half years for pseudomonas, that eventually cleared by overdosing on oral antibiotics as well. I’ve had pseudomas twice recently, thankfully cleared quickly. I have always had to do my own physio for postural drainage, but recently it’s not working well, I’m now plugged and have partly collapsed lung. Ive been patient at the leading hospital in Birmingham, Queen Elizabeth for over 40 years and am told that they do not provide drainage physio, and will have to find a private physio and pay for it. Initially I asked QE for one session to establish if my technique needs changing. From reading your comments, do you get physio on NHS, either at hospital or at home. I’ve always tried to stay active and positive, but it’s got more difficult.

Thanks and good wishes.

[Iram_sa in reply to Morrison10]

Hi there,

Thank you for your message. Glad to hear that the pseudomonas has cleared. Have been dealing with this for last two years and been admitted twice as well as home administration.

Yes physio is done via NHS and have had it done both as outpatient and inpatient. Royal Brompton even have a gym designed to help with physio. I

am surprised you are still doing postural drainage as told that’s a very outdated method now and been shown a much more effective way for clearance. It is tiring but physio generally is and something we do need to do.

Do ask your consultant about physio therapy treatment on NHS as it’s done here at Royal Brompton (small space but a very effective team especially those that look after us as in patients) Not sure if it’s worth your while to be referred to Royal Brompton here in London every few months or so for physio treatment?

Hope you had a wonderful Christmas break and have a healthy new year 😊

Iram

[Morrison10 in reply to Iram_sa]

Hi Iram,

Thank you so much for your reply. Good luck with pseudomonas, what cleared mine that I’d had for over 2 years was taking two oral antibiotics simultaneously whilst enjoying the clean air in the Scottish highlands, riding pillion on my late husbands motorbike 11 years ago. I was taking the antibiotics before going up there, but one of our friends arrived at guest house with bad cough etc, so decided not to risk it and continued my antibiotics for another week. Damaged my liver but that has recovered, and didn’t need antibiotics for next 40 weeks, amazing, longest I’d been for many years. It’s worth try!

Thanks too for inf re physio, hope I don’t have to come to Royal Brompton, particularly over winter months. Don’t go to hospitals etc until April, or after end of October. I’ve been to Leics who have PCD unit for children and am going back in spring, helping research I hope. I live north of Birmingham, in Sutton Coldfield. Will tell QE I’m e titled to physio help, as per NHS PCD patient regulations.

Re arthritis etc, I’ve had painful hip for many years, but ibuprofen at night helps. Get twitches etc elsewhere, but persuade myself its in imagination.

Good luck, and keep fighting!

[KellyNeal]

Hi Iram,

I know your post was from a year ago, but I felt I should comment.

After my daughters first bronch they discovered H flu, 4+ strep pneumoniae. I remember the doc discussing the use of levaquin but there were report of potential joint damage reported. We chose not to use that particular drug. I am not sure if this is a drug you have used in the past or not, but just thought it was worth mentioning.

Best Wishes,

Kelly

[OanEve in reply to KellyNeal]

KellyNeal, your daughter has pcd?