Last July, at the age of 48, after suffering severely from swollen joints for 3 months I was diagnosed with Rheumatoid Arthritis and sjorgens syndrome and put on a variety of drugs including a high dosage of prednisolone and an asthma pump. Initially I felt so much better but within the month I became aware of breathing problems, I was struggling to get my breath when exerting myself- walking up stairs, a slope, distance further than a few hundred meters. Life became very scary and I suffered mentally!
During the last 8 months I have been to hell and back! I have had steroid infusions, antibiotic infusions, chemotherapy infusions, tablets galore but nothing has cured! My lungs!
I now have a diagnosis of obliterative bronchilitis! A rare reaction to Rheumatoid Arthritis. My lungs are scarred and are never going to be better!
I'm learning to deal with my illness and have developed strategies to deal with everyday life but I would love to know if there was anyone else suffering with this rare disease and if we could swap coping strategies.
Thank you
Written by
Lynnelovessunshine
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Hello and welcome. We do have others with this condition and hopefully they will be along soon but meanwhile you can read other posts which are related. If you look top right under Related Posts you can select a few to read.
Hi I was dx with psoriatic arthritis two years ago it is also a autoimmune disorder like rheumatoid arthritis so I can under stand what you are going through. I already have osteoarthritis are you seeing a rheumytolagist consultant. As my GP wanted to see if my OA was just that and not RA. But found out it was PsA too. I was given DMARD medication to slow down the progression and cocodamol for the pain. I also have COPD I have inhalers to help with my breathing. I have not been diagnosed with any of the rare conditions that come with the arthritis. But that dosnt mean I will not get them. But I will deal with that if it happens. The things I do to help me cope is exercise and walking a lot. I also have different things to help with dressing opening things. And try to stay positive.. If you don't see a rheumy consultant I would ask to be referred to one so you can be put on the right medication. Take care
Hi Lynnelovessunshine , nice to meet you. I think we are about the same age - I'm 49 and have had lupus/uctd for my entire adult life. It has recently started to affect my chest - bronchiolitis (rather than obstructive bronchiolitis as far as I know) which is tending to resist treatment . I know of several people on here with OB and they'll be in touch, I'm sure but I just wanted to offer my support and understanding - this is a great place to post. Everyone is so kind and supportive.
Yes I also Have OB, there are a couple of us here and I don't doubt the others will be along soon!
Like yourself I've had the steroid infusions, so many tablets that the pain clinic won't touch me and at the moment about to have my fourth cycle of chemo, only another 2 to go.
I know that it won't cure or stop the OB, but hopefully will slow it down some as its been very aggressive, apparently because of UCTD.
Who is treating you? Because of the oddimosity of this condition, its hard to find info isn't it? Would love to hear more so please pm me if you're happy to tell me more?
The breathlessness stuff, there is some good advice from the British Thoracic Society, they are the governing body for the respiratory nurses, but I can never get the link to work!
Meanwhile, you are in good company here, although I'm sorry you have been landed with this diagnoses.
Hello Lynne. Welcome to the Zebra club (rare diseases). There are a few here with OB. RA can trigger it, as you know, as can Lupus. In my case it seemed to be caused by damage to the small airways from extensive, unresolved blood clots in the small blood vessels. I do hope you are getting good help from your medical team. It is a difficult one because treatment options are limited. Pulmonary Rehabilitation is recommended. As with all these chronic lung diseases, exercise is very helpful, physically, emotionally and psychologically. It is also helpful if your consultants (presumably a Rheumatologist and a Respiratory?) can communicate well.
Look after yourself and keep in touch. This is a brilliant forum. Funny, positive, well-informed and very supportive.
P.S. Like Ccupcakes I should like to know how you were diagnosed. It can be tricky. Difficult to see on CT, and even biopsies can be inconclusive. So we are curious.
I've had a couple of CT scans but not a biopsy as the lung Consultant didn't want to upset my damaged lungs anymore than they are. I had a second opinion from a professor at the Royal Brompton. He agreed the diagnosis was accurate. He also discussed a lung transplant in the future, which is very scary. I'm praying things never come to that 🙏
In the meantime I try to have the attitude that as long as I can still put one foot in front of the other!!! I can cope 😃
I am now back at work full time, a Primary School teacher. The only duties I now don't do are playground duty and PE which is an irony because as a child I was Sport Billy and as an adult I've continued to be passionate about sport and have inspired many children over the years to have a positive outlook towards Sport!!! I now get breathless walking from the car😂 Life!!!!
I began a reply and my iPad went on strike. So here goes again. My consultants, like yours, were not keen on biopsies, for the same reason. My scans should be going to a Professor at the RBH. Possibly the same one?
You are doing really well to still work. Well done. It will be a huge boost to your confidence to do that. And your sporty history will be of benefit.
Keep going, but please do allow yourself a little leeway. Be gentle with yourself, it is a nasty disease, and you will have to pace yourself.
I hope you have family and friends to support you.
Hello and welcome. I too have OB, diagnosed about 6 months ago. I also have bronchiectasis which was dxd about five years ago. My OB was probably caused by the drugs I was taking for atrial fibrillation. I have congenital heart disease and developed af ten years ago. I have had lots of treatment for it, ten electric cardioversions when they shock the heart back into rhythm, and one ablation where the kill off some of the electrical activity in the heart. Unfortunately that failed two years ago and I was prescribed a drug which only rarely caused lung problems. Unfortunately I am one of the few who developed OB, at the moment my respiratory consultant wants me to stop it and the the cardiologist doesn't. I am in af at the moment. I feel sorry that you have developed OB so young and you are brave to go on teaching, which I know from personal experience is a very tiring job, I am sure the children will support you really well though. When I went back to teaching after having a mild stroke the children were wonderful, and they were teenagers! I am long retired now. Good luck and many blessings. xx
I was diagnosed in 2013 with RA. I went on methotrexate and 7 months later I had nodules in both lungs. Everytime I took RA meds I was in a mess. In 2014 I took more meds and 7 months later I had 3 different types of skin cancer. One being melanoma. In Aug 2016 I was put on a medication It was for RA and a cancer. 7 months later I was diagnosed with metastasized melanoma in my lower left lung. I also was diagnosed with ILD in 2014. I really understand where you are coming from. I just had the cancer removed 2 weeks ago. Just read up on side effects and see if you can handle them is my best suggestion.
11 yrs ago almost overnight my mounts became inflamed and it was so painful I had to literally pick my legs up one at a time to get in my car. The go referred mecto a rheumatologist who prescribed methotrexate. Within 4-6 weeks I was struggling to breath walking up to my horse pasture. The dr. Told me to immediately stop the methotrexate and referred me to a pulmonologist. An X-ray was taken and it showed lung damage beginning from the bottom up. It was a sign of alpha one antitrypsin deficiency as lungs are affected from bottom up not top down as in most emphysema cases. My blood sample was sent in and it was confirmed I’m alpha one ZZ My Fev1 was I think 58 in the beginning. I’d thought it was 42 but was told I was reading it wrong. 15 mths ago it was 28%. I’m due for a new pft this August so I’ll see if it’s gone down. I feel it has worsened some. It’s been med trial and error to find the right cocktail to manage my psoriatic arthritis without further damaging my lungs. I’m on an arsenal of meds. I still work but it’s getting to be a real struggle. I’m too young to retire and I need the insurance.
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