RA , Lungs, eye

[ks1966]

I developed Brochiecatasis, copd and eye pain as a result of RA. My clinical tests were ok, so the doctor decided not to put me on medication for the time being. I feel RA is destroying my organs and i am not doing anything about it just because my clinical tests were ok. Any thoughts would be highly appreciated.

[Hidden]

Hello

They have not started you on medications yet, that is a good thing. Later when you begin taking medications they will start taking bloods

Not to worry, I have been on medications now for thirty years and I am on a good tranche of tablets and injection. You may, have that to look forward to. My bloods are taken every two weeks at the moment. and I have a slight problem showing up in a kidney, that is not important, they know and watch. I cannot complain I am 63 years old, so your innards are safe I suppose, a creaking gate outlives them all

Good Luck

BOB

[ks1966 in reply to Hidden]

calming and good to know

[Hidden]

Hi - can you explain how long ago you were diagnosed with RA and whether you have tried any DMARDs yet? My doctors always say that they base their decisions primarily on signs and symptoms not on blood tests. But if you have a diagnosis of RA then they will usually assess you on joint pain and swelling first and foremost. Are you able to get a second opinion if you aren't happy with what they are saying? If you feel your organs are being attacked then you might have a more systemic autoimmune condition such as SLE or Scleroderma? I know RA can affect the organs but I believe it goes for the joints and tendons first. Tilda

[ks1966 in reply to Hidden]

Hi rarebird, I have had symptoms for 3 years now , i also have severe knee pain (both) for a few months each year. so much so that I can't bend my legs fully. this happens during winter time.I haven't taken any medications

[Hidden in reply to ks1966]

Thanks for explaining ks1966. So you haven't been diagnosed with RA yet by a rheumatologist and they don't accept that you have RA? Are they saying you have OA in your knees? This would make sense of the fact that it only occurs in winter perhaps? Do you have pain in your hands and feet too? If so can you seek a second opinion? Also some of the medications we are given for RA can impact on the lungs and eyes but that would be for a rheumatologist to work out accordingly - not a reason to neglect you. I have read that mild RA is sometimes left untreated and just monitored but usually they treat it aggressively early on. Has an opthalmologist seen your eyes and diagnosed what is happening? My optician said that RA of the eyes shows up differently to other eye problems. And as I've said their are other autoimmune conditions that can affect eyes, lungs and also give arthritis symptoms - but usually they would also be treated with immunesupressants too. I'm still mystified - sorry. Tilda x

[huggybear]

Having read other replies I can assure you that R A does attack internal organs I had a large DVT owing to R A also lung clots PE and that was RA so I to have not had treatment except warfarin told that PTA will not fund RA factor test I have been diagnosed since 80's I did have anti inflammatory treatment but I'm asthmatic well my dear hope you get treatment and just keep fighting the doctors good luck

[Hidden in reply to huggybear]

Sorry but just to clarify that I was not saying that RA can't cause damage to organs - but just that there are other equally serious autoimmune/ connective tissue diseases which do have arthritis as a main symptom but almost invariably affect the organs early on. But I have been told that whatever form of inflammatory disease a person has, it still needs treating as early as possible.

[cathie]

I'd want to know why you aren't being offered any treatment if you have symptoms. What does your GP think? Are you confident about the rheumy ? Hope you can get some answers, but just being atypical doesn't mean you shouldn't get treatment. Good luck and let us know how you're doing

[Hidden]

I also have Bronchiectasis as a result of having RA. But I didn't know that COPD was also caused by RA.

[clearasred]

Hi I can start and tell you my journey so far after being diagnosed with it last march I currently take methotrexate weekly and Hydroxychloquine and steroids daily .At the time of diagnosis I was put onto steroids to help initially with pain management .Twice now ra has tried to get me off them but both times has resulted with me in the eye infirmary with loosing my sight very scary and painful .The eye infirmary have said I now have posteir scalitis which is ra related .So this is another hospital appointment I have to attend regularly

Last week o was sent by the doctor to have a chest x ray due to some new problem developing. On Monday I attended the neurologist for the last five months my hands are constantly alive like pins and needles but 24/7 also several times a day my hands just lock up like a claw very painful I then have to use my other hand to prise it open. Well the results won't be ready until next week. But the neurologist indicated to me it could be nerve muscle damage by ra .So my friend you are no alone this thing comes from many angles .Good luck.

[ks1966]

Thank you all for your feedback I will go see my rheumy soon. I hope to get some firm answers from him

[helixhelix]

I'd suggest that you write down a list of questions for your rheumy as it doesn't sound as if you've been given very clear advice from him, or even a clear diagnosis. If the RA has affected your lungs then it's very odd that your clinical tests are normal. So if you were me I'd be wanting to ask if he's sure what has caused your lung and eye problems, and get a really clear answer about whether this is RA related or not. And then ask about what treatment can be given to help you, and what you should be doing to help yourself as well, as RA is progressive so you want to know how he intends to control it.

[nevadawoods]

There is small percentage of RA patients who don't have the factor show up in their blood work, but who have the classic symptoms. I am one of them. I do not have the factor show up in my blood, but my fingers are distorted and the middle joints destroyed due to RA.My rheumatologist gave me a handout about all the organs that can be affected by RA (just about all). That is the reason we are all put on drugs to halt the progression. My vet told me his mother died from complications due to RA, so I am assuming she had some kind of organ failure. Please find out why your doctor is not putting you on meds.