Last year was awful. Pneumonia 4 times and respiratory infections every 6 ish weeks.
My daily antibiotic was stopped,Doxycycline, because of ? Arthralgia. So much joint pain some days I just cried.
Had a routine call from the ILD nurses a fortnight ago. Come in for a repeat blood test they suggested. By the time I got there a chest xray had been added. Ankles and fingers a bit puffy I had mentioned.
So yesterday I got a letter regarding the xray. Essentially- further X-rays would be of no use as the ILD fibrosis was so pronounced that further changes would not be able to be defined. Plus Cardiomyopathy of 57% noted😞 Echocardiogram arranged for next week after I contacted my GP.
Next a phone call from ILD team , my blood results suggest I have rheumatoid arthritis as , I think she said anti CCP level, was raised at 73. Supposed to be under 12 I think that is what was said. By this point I was in bits. Apparently I need an urgent review by a rheumatologist. I wonder what is classed as urgent these days? I am taking panadol or co-codamol regularly and would love to have a full nights sleep again!
I had hoped 2025 would be better than 2024 but it does not appear to be panning out that way.
Anyone else walking down this road of ILD, RA and heart getting tired?
Moan over, thank goodness for this forum where you can ask questions and let off steam!
Written by
Blyth1
To view profiles and participate in discussions please or .
You're entitled to a moan with all that going on Blyth1 but you weren't and just saying how it is. I can only sincerely sympathise and hope the rheumatologist review happens very soon. Thinking of you ××
What a bad year you’ve had. Hopefully 2025 will be better!
I really feel for you. I’ve had RA since 2004, asthma and bronchiectstasis since 2012, then last year I was diagnosed with ILD, thought to be caused by the RA. So far my hearts ok. I feel as if I almost rattle with all my meds, as well as 4 inhalers!
I definitely feel as if I rattle now! Goodness knows what, if any, drugs will be added to my mix . Takes me all my time now to want food at breakfast time! Stay well Helenlw7
Hope you start to feel a little better as we move into spring. A good suggestion above, to contact the ALUK helpline - hope they can give you some useful tips
Letting off steam is what helps you the individual all of us to feel a little bitty better. and do you know what, That is exactly why this forum is the place to be.
It helps to know that we are not alone AND THAT IS THE MOST IMPORTANT FUNCTION OF TOGETHERNESS. If I moan at my wife although concerned, She shrugs it off and carry s on normally. and then she is back to telling me off.
I had 3 admissions to hospital chest infections/ pneumonia.
Finally I fell and broke my leg.
I then had a heart attack on the table.
2 month admission.
I was pretty fed up.
At a cardiac check up 9 months later,the cardiologist said he wasn’t convinced I’d had a heart attack.he said my body could have produced the relevant chemicals- I still get chest pain,use the GTN spray occasionally
Now 18 months later I feel more settled.still have ILD,RA,LUNG FIBROSIS,but everything crossed have stayed out of hospital- everything crossed.
I hope you don’t have to wait too long for your urgent appointment
what a load you have had to cope with, its ok to have a good moan! I hope the Rheumatologist can help and you dont have to wait to long. all the best Sally x
What a time you’re having, I mimic it slightly without the heart thankfully. It’s awful to add more to your already struggling body and it’s a lot to take in, I think I was in denial and shock for a while infact I still think it’s a dream. I never thought my health would get this bad. Be kind to yourself and try to relax and take each day as it comes.
what a lot to go through. Bronchiectasis often goes hand in hand with autoimmune diseases (which RA is). I suspect that your nurse said your CRP was raised. CRP is an inflammatory marker and gives an indication of inflammation in your body. Would normally be raised when you have an infection. I hope you get your rheumatology appointment soon and start to get on top of all this.
Such alot you have going on at the moment Blyth1 and I can sympathise with your problems. I am surprised your gp didn't arrange for you to have a steroid shot, this could help alot with the joint pain. I would contact them on Monday and ask about it as you could be waiting quite a few weeks for an appointment with rheumatology . I have rheumatoid and bronchiectasis/asthma and have been fine on Methotrexate . The results on your CRP being 73 shows you have a huge level of inflammation, when I have this it's a flare up and need a steroid shot in my butt which helps to calm it down and lasts for months. I do hope you get seen to quickly, the pain of a rheumatoid flare is terrible x
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
really anxious after NHS appointment 
Feel like a fraud
Am I insane?
Suspected lung cancer
