My GP says I'm an enigma!

I have been experiencing periods of breathlessness for the last 6 months and my rhuematologist suspected pulmonary fibrosis. After having chest x rays, a high resolution C.T scan, overnight pulse oximetry, a cardiac stress test, ECG,and an echo cardiogram the chest and cardiac consultants have told me that all those tests are fine.

Just one problem of course I'm not fine, I have a constant dry cough, shortness of breath, dizzy spells and I am even more tired than usual.

Now have to wait 4 months for a cardiac perfusion test (that's on the urgent waiting list)

I actually thought that early intervention was critical!!!

23 Replies

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  • Hi John

    What RA meds are you on? I had similar reaction to Methotrexate and had to come off it in November - most scariest experience ever for me!

    Trish x

  • That was my first thought too..Seems to be becoming a more frequent complaint with MTX!

  • Are you a smoker John? There are some diseases that fit into that picture but usually the clients are smokers or live with smokers?

    Axx

  • Hello Allanah

    I'm not a smoker but my wife is, the funny thing is that the chest physicians say my chest is clear although I'm still breathless??

  • Thats good to hear , theres some lung problems that can be caused by high smoking that give u a cough and breathlessness, doesnt usually affect non smokers though.

    So I think from what you have said the chest doctors would have done xrays and a spirometry test to check ur lung volumes?If not maybe you could suggest they might be helpful.

    i had Remicade and methotrrexate which unfortunately didn't work for the RA but I didn't have breathlessness.

    What i DID GET WAS "atrial fibrillation" just after i got RA, its a pulse disorder and I had the cardiac test where as I couldn't do a stress (exercise) test they gave me drugs to speed up my heart and then put me though a scanner to see if any areas of my heart were damaged, luckily there was no heart damage but an unusual pulse, they gave me drugs and its fixed now!! So it was a disconcerting test but its over quite quickly though i had to wait an hour between part 1 and 2 of the test.

    If your symptoms persist though, you should persist!!!

    Good luck hope they sort in soon for you!

    Axx

  • Thanks for the response Allanah so glad to hear that they sorted you out sounds like you had a tough time. I will stick with it until they find out what the problem is, watch this space.

  • Hello Trish

    Likewise I was on a combination of Methotrexate and Rituximab infusions, the first thing the rhuematology registrar did was to take me off the stuff! and I wont be going back on.

  • I had a chest infection since xmas, i've had 4 courses of antibiotics and i'm off mtx until i go for my next appointment. The reason being i'm having breathing problems. I don't know whats going to happen next. I am back on 10mg of steroids until i go back as well. I don't smoke or drink,so i know thats not the problem.

    John i hope you get sorted soon.

    Sylvi.x

  • Thanks Sylvi

    I was beginning to think it was all in my mind, I was really worried particularly when pulmonary fibrosis was mentioned.

  • I have had similar problems and blamed it on MTX. I know breathlessness can be made worse by anaemia, which Sulfasalazine can cause. And also allergies can be a problem.

    Have you heard of Buteyko? It is a set of breathing exercises that asthmatics use and it might help you to manage while you are waiting.

    I do hope you don't have to wait too long.

  • Thanks Phoebe, I haven't heard of Buteyko but I will certainly research it. At the moment I will try anything I'm very gradually deteriorating and quite apprehensive about the future. 6 years ago I ran the London Marathon and now I struggle to finish a sentence without stopping to take a breath. Thanks again for your response it is really appreciated.

  • Hi John, I've been going through similar problems, chest pain, breathlessness and extremely fatigued after simple tasks. As you say 6 yr ago I was working full time and leading quite an active life despite a lifetime of pain, I loved my work, although I did have to get up at 5 so I was able to get myself ready to start at 9.

    My doctor gave me Nitro spray and referred me to a cardiologist. The ECG showed Tachycardia and Left ventricle enlargement so I was referred for a Myocardial Profusion Scan which is what your waiting for. This showed no blockages which is pretty good as I was a smoker for 35 year, however, it did show reduced heart function (heart failure). I'm now waiting (5week wait) for an Echocardiogram to see which part of my heart isn't working properly and options for treatment.

    The stress of having wait what seems like a very long time has been awful, so I really do wish you well.

    Beth x

  • Hello Beth

    Very interesting similarities there, my main frustration is the lack of a diagnosis despite all the tests. However some good news I have received an appointment in the post this morning for the perfusion test and its only going to be 3 weeks away. Thanks for your response and kind words hopefully I will be on the mend before my holidays.

    John

  • Sorry this is quick, my sister (doesn't have RA) went through something similiar and like you had all tests done; since then she got rid of her feather pillows and she's all clear again! could it possibly be an allergy? she stayed in a hotel last weekend and never noticed a feather pillow, she's still suffering even a week later...

  • Hello Wiliby, thanks for your post it is something that I have been asked to consider. Its a long process of elimination though, thanks again for being kind enough to help by responding.

    John

  • This may sound obvious but have you every suffered from asthma? or worked in a very dusty environment eg old buildings, flour or animal feed mills? x

  • Hello Summer, have only ever worked in that sort of environment for very short periods and that was some years ago. What is it that you had in mind ?

    John

  • Hi John

    have you had your iron checked? Apart from the dry cough all the other symptoms are typical of anemia, when mine is too low (very common with RA) I feel exhausted, am really breathless & have also felt dizzy too.

    Steph.

  • Hello Steph, that's something that hasn't been considered yet and I will get it checked out. Its interesting that because I have never been told that anaemia is common in RA despite having had it for over 4 years now. Thanks so much for the suggestion and fingers crossed that it could be someting as simple as that. Thanks so much for your kind response and I will post the result.

    John

  • Hi John

    I think Summer is thinking similar to me, there are some illnesses that give shortness of breath, dry persistant cough if you smoke or work in polluted or fine particles areas, such as flour, asbestosis, coal mine etc

    . If your cardiac tests are ok maybe you could suggest lung function tests such as peak flow or spirometry testing to count out lung problems such as Asthma COPD which maybe wont show in the mild form in Xray but would make you feel breathless.

    And when your partner or friends smoke ask them to do it outside away from you so your shortness of breath doesn't get worse? It does help people who are susceptible to cigarette smoke.

    Good luck

    Axx

  • Hello Allanah

    Thanks for the suggestions, I have already had lung function tests and they all come back as normal. However pulse oximeter and arterial blood gases indicate persistent hypoxia??

  • Well John I have thought long and hard about this, so your cardiac tests pending, bloods ok, xray ok lung function ok.....well unless you live in the Andes (accounting for the hypoxIa, or anaemia) i agree with your GP you are indeed an enigma!!!!!!!

    Good luck with the cardiac tests and let us know what happens, otherwise I'll be poring through all my books loL

    Axx

  • Hello Allanah

    I feel so special now being so enigmatic! I even questioned whether or not I was Münchhausen's syndrome lol. I will definitely let everyone know through the blog when the mystery has been solved.

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