I have been suffering feelings of breathlessness for over a year now.
I was diagnosed with RA about 5 yrs ago and was given Methotrexate.
Had to increase the folic acid that was supposed to help with the nausea and recently , my rheumatologist has reduced my methotrexate down by half as-she was concerned with my blood test readings that I have taken monthly.. Apparently , just read that, although rare, one of the side effects with methotrexate is breathlessness. Should I be worried ?
Hello. I understand breathlessness can be caused by the RA itself or by methotrexate. In my case it was the latter and my consultant stopped it and switched me onto on a biologic. I suggest you contact your Rheumatologist or nurse and ask for advice. I hope you can get some relief soon.
Thanks for your reply. I will try to contact someone about this .It is a problem at the moment with this pandemic taking precedence. I am going to be reaching my 80th birthday in a few weeks time and I have the habit of blaming everything onto the aging process but I will try and hopefully get some results .
Please do try as it could be important, especially if the breathlessness has worsened recently.
I had some chest pain recently with breathlessness and, after various blood tests, an ECG and a CT scan it turned out that I had chronic pulmonary embolisms, which needed prompt treatment! So you just never know.
The NHS is supposedly "open for business" so please insist on getting proper and prompt advice. If you can't get hold of your Rheumy then contact your GP.
Hope you’re alright at the mo, Lola. x
Hi I agree with the others. Do see if you can find out why as it could be something like an inhaler that is needed. Better to see what they can give you or do for you to improve it. 💗x
Do push for some attention. It could be nothing. As you say a combination of age and perhaps losing some fitness because of the limitations of the disease. Or it could be something due to the disease or the drugs which needs to be dealt with.
I hope it is nothing, but just in case don’t leave it to get worse.
Good advice given already, just wanted to add that I hope that you get answers quickly and to say welcome to the forum.
Please let us know how you get on. 😊
Thank you!
I have long history of RA. Became breathless all and was eventually diagnosed with Pulmonary Fibrosis. I would talk to my doc about it..
Talking to my rheumatologist on June 10th .With this pandemic it quite a while to finally get through
Yes it can be. It could also be other things. I had to come off mxt several years ago while I had tests which turned out to be nothing to do with mxt. It just went away and not had any trouble since. Good luck.
Like you I get breathless I think it is RA as well as all the drugs I always blame it on lack of fitness ,keep safe
I am going though exactly the same thing. I have been breathless for over 2 years. I have been told many times that my sats (breathing rates) are too low. I was finally given a CT scan of my lungs which showed that my lungs seem too small & there is a lot of scarring. When I mentioned I have RA & am on Mtx they just don’t seem to take any notice. I am being sent for breathing tests in 2 weeks so will See if that shows anything up. I keep being told to loose weight. Please let us know how you get on & I wish you all the best. Xxx
I hope you can be referred to a respiratory physio for some breathing advice and hopefully make your lungs stronger. x
Thank you Neon. I am so tired of it I can’t even manage to walk up the garden path now. Xxx
I hope you can resolve this and build your strength. Often the muscles go too when we’ve not used them and this last year had taken its toll on mine. xx
I know what you mean. Back in 2011, I had swine flu and was really ill with it. I was in bed for a month and when I started to try to get back to normal it was so hard just to walk, but I did get back after a time. However I was ten years younger then so am concerned that it won't be as easy (not that it was easy that time) this time. xx
I couldn’t walk up the side of my house up my garden path as I was exhausted although it was my legs that had lost muscle, but lack of exercise affected my fitness and breathing. My leg muscles are weak now as my back keeps going 🤨 Not enough walking due to shielding. 😑 It takes a while to build back. I’m sorry you’ve had swine flu. 😢 I hope you can resolve this with your breathing tests. I’ve had spirometry/FEV/FCV and all really good and they can help determine asthma. Was your CT recent? xx
Yes, my CT scan was last month. I do have asthma but they say they are sure it isn't that as all the peak flow tests and my usual inhalers are not helping it as they always have done before. What are FEV and FCV tests please?
Sorry should have been FTV .. forced total volume and FEV1. The latter is the air you exhale in the first second and the total is the total exhaled! I am sure you’ve had these even if not told their names. They are part of the first standard asthma breathing tests they do I was told but I’m no expert but I’ve had them done 4 times, now each time I’ve seen the respiratory consultant then once again the GP nurse. xx
Thank you for your fast answer Neonkittie. I have my own peak flow meter for my asthma and have had it done many times at the doctors as well.
Yes I know exactly how you feel. I used to be reasonably active for my age but with this breathing problem I have now had to resort to getting out and about locally on a mobility scooter
I have a mobility scooter but just at the moment the pain in my back is so bad that I can't even use that. I sometimes feel like a prisoner in my own home. When I was being shielded, it was really no different to how it is all the time.
Thank you
HiI don't want to add to your worries but my Mum had RA all her life after the ages of 12. In her later years she was put on MTX for a good many years and she eventually had breathing problems and continual chest infections. Her specialist eventually told her that her lungs were really scarred and that this was likely because of the MTX. My mum said that the MTX had been such a game changer in managing her RA that if she had to put up with the breathlessness and infections it will have been worth it.
You might want to get your specialist to check this out in case there is something they can do.
Cheers
Steve
After being on this group I have finally decided to persist more strongly and I’ve now managed to get a telephone consultation with my rheumatologist for June 10 thank you everyone for listening and I hope I get the news that I want to hear
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