RA and bronchiectasis advice please

[Sandy-]

Hello, I’m new here and have read lots of posts and have posted on the

bronchiectasis side of health unlocked.

I started in October last year with inflammatory arthritis having raised markers and have had 4 IM injections of steroids. I was given Hydroxychloroquine in February which didn’t seem to help and just take 3 tablets a week. In August I was give Sulfasalazine increasing to 4 tablets daily but stopped for a short time with side effects after taking 4 tablets then subsequently a chest infection.

I have lost weight and weigh 7st, and struggle with pain and stiffness especially first thing making it difficult to clear my lungs.

Any help or advice from people with similar problems would be greatly appreciated.

[Lolabridge]

Hi Sandy and welcome to our select club!! Sorry you have had your diagnosis and that the first 2 DMARDS you’ve tried did not suit you.

You may be tried on Methotrexate next although with the chest problems you have experienced your consultant may look to try you on a biologic or biosimilar drug next. You may need some oral steroids too for a while as the steroid injections wear off to help you cope until the next drug starts to take effect.

Finding the right drug that’s best for you can take a while but be guided by your consultant. Do let your consultant know about the weight loss, stiffness and other problems you’re experiencing - you may need to push for some action quickly. Hope you get some relief soon. 🤞🏻

[Sandy- in reply to Lolabridge]

Thank you for your reply Lolabridge.

I’m still taking Sulfasalazine and have gone up to three tablets today in the hope it may help. I was told I couldn’t take Methotrexate after a chest x-ray.

I’ve never been offered oral Prednisolone, and thought it was due to risk of chest infection.

My two consultants are aware of my weight loss, and I’ve been told to eat small meals often.

Best wishes.

[Hidden]

I have Bronch as well as RA, but I don't really know what kind of help I can give you. I'm on MTX and Leflunomide for RA and I have Pseudomonas colonies on my lungs. Most of my pain is in my spine (Osteoporotic fractures) and hips (Osteoarthritis) Walking is virtually impossible and I get very SOB due to the effort. Also have Sjogren's Syndrome and Vasculitis.

[Sandy- in reply to Hidden]

Thank you for your reply poems galore1. I see you have other conditions, and like you I have become less mobile with painful and swollen joints.

Hope you get some improvement. I take Azithromycin three times a week and this keeps infections down. I believe pseudomonas is difficult to eradicate.

Wishing you well.

[Hidden in reply to Sandy-]

Yes, I forgot to add Azithromycin to the list. My consutant told me I need only take it during the winter months, but I take it all year round. Pseudomonas is impossible to eradicate. Little Pom and others are far ore experienced and knowledgeable than I am, so search for her posts in the British Lung Foundation group. healthunlocked.com/blf

[oldtimer]

I find that the pain and stiffness in the morning is helped by having a shower in the mornings before I try and do anything else. That might help with clearing your chest as well?

If you have to do postural drainage you might find that is best done later in the day too. And then you might need more than one shower to keep your flexibility going!

Keep your own record of your symptoms so that you can let the consultant know how you are doing on the medication - and there are no prizes for being a 'good soldier' except inadequate treatment.

[Sandy-]

Thank you for your helpful reply oldtimer.

I have my shower after postural drainage and breakfast but will take your advice and have one first thing too, the warm water is definitely soothing.

Recently I’ve had to clear my lungs 3-4 times a day, and I find the lunchtime one easier as the Carbocisteine has probably kicked in.

Thank you so much for for your advice and keep well.

[bear4ble]

If your lung problem is bacterial etc may I suggest you investigate Allicin Liquid. Also to help things along you may wish to check out Liposomal Vitamin C.

[Sandy-]

Thank you for your reply bear4able. I’ve not tried either of these products though I have a feeling Allicin is part of the onion family.