Appointment with chest/respiritory consultant on Monday. - NRAS

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Appointment with chest/respiritory consultant on Monday.

holly-willow profile image
holly-willow

Hi to all, I have been getting progressively breathless for over two years now. In November last year, I was taken into hospital with cellulitis and an infected leg ulcer and to begin with they thought it might be sepsis. The ulcer on my leg has only just healed after 6 months and I was having a nurse come in twice a week to dress my leg. I will now have to wear elastic stockings for the rest of my life and they are horrible.

Anyway, I had been thinking that the breathing problem was because of my asthma but it was getting worse even with my usual treatment. I was sent for a chest X-ray and then a CT scan and my GP rang to say that it had shown up scarring, shadowing, thickening and a lacy pattern and I should see a chest consultant asap. An appointment has come through quickly for me to see one on the coming Monday. It is good that it has come through fast but on the other hand it makes alarm bells ring because they are seeing me to quickly.

I was told to leave off the Methathexate and Leflulmide back in February and I am now feeling pain in my fingers, knees and feet much more. I am just wondering if any of you have had breathlessness caused by Mtx or Lef and if so what was done about it. I know you are not doctors but it would be interesting to know of others experiences.

Two days ago, I tried walking up our garden (it's not a big one) and I bent down to pull up a dandilion and couldn't catch my breath after doing that. I managed to make it back into the house but struggled to do that.

I am getting worried now but will just have to wait until Monday and I don't suppose I will get any answers then anyway.

I hope you all enjoy your weekend and that the weather is better wherever you are. It is very bad here with torrential rain and it is dark and cold and just like winter.

39 Replies

Hi H-W, I hope your appointment goes well and your respiratory consultant can help your symptoms and they fully explain the CT to you. You have asthma which alone could be the reason you were breathless when bending down. The GP isn’t an expert radiologist with all due respect, but like any xray or scan that shows anything different from the norm, the GP has to inform you. I feel the GP has been looking at the xray as they won’t be able to interpret a CT. specialist knowledge is needed absolutely by radiologist and respiratory consultant.

I understand how you are feeling 💗 as had the same early 2018 with cloudy foggy xray. It was double pneumonia. I am sending gentle hugs and will be thinking of you on Monday. Yes, like November here too! Glad I didn’t sow seeds outside when it was sunny and 20 degrees two weeks ago. xx

Thank you so much for your kind words Neonkittie. I thought it was asthma for a long time but the asthma medications that have always worked before were not helping and that is why I was sent for an X-ray in the first place. I don't think it would be anything like pneumonia because I don't feel as ill as I would if I had that.

It's still raining here and has been for ages now. This time last year we were able to sit outside in the garden on most days. xx

I hope it can be rectified with medication and a maybe a change of medication for your RA? It may be once you change the med the lungs heal. (Someone on here has just had that recently.) As you might have seen I have been trying to solve chronic bronchial episodes as a result of my RA med and needing to pursue those again so I know how unsettling it is. Here or on PM whenever you want to chat there or here anytime. I do recall May 2020 as being very warm and sitting out. Good luck dear Holly-Willow. xx

Best wishes for your appointment on Monday.

holly-willow profile image
holly-willow in reply to Mmrr

Thank you very much Mmrr. xx

I hope all goes well on Monday.Take pen and paper,so you can make. Notes.

holly-willow profile image
holly-willow in reply to Oshgosh

I will do that Oshgosh. It's a good idea. xx

Good luck on Monday .. personally I like an answer ASAP . The waiting is the worst. Get a list of questions and symptoms . I do . I use to kick myself after an appointment as I would get outside and not get all the answers xx

holly-willow profile image
holly-willow in reply to J1707

Thank you J1707, I don't really know what questions to ask but I will sit and write a list of anything I can think of later today. xxx

Hi h-w. I'm glad you're being seen so quickly and I hope it all goes really well, I would have said try not to worry but that's easier said than done. Good luck and let us know how you get on. 🙏 xx

Thank you springcross, I will let you know what happens. xx

Hope all goes well on Monday🤗😘

Thank you so much opalfree. xx

There seems to have been a change in the management of asthma too. The surgery where I go have suddenly taken a very active interest in what to me has been worsening asthma for a year, saying that I shouldn't be needing to use the reliever so frequently. The asthma nurse saw me F2F, took me out into the garden at the surgery and did all the breathing tests and has rung me twice since to find out how I am doing with the new inhalers.They had been investigating my heart function, as I have hypertension also, but I couldn't understand why as I have no chest pain and no breathlessness when I'm not doing anything or lying down. I've now had an all clear for the heart investigations.

I hope that the respiratory physician can sort out a course of action for your breathing and, perhaps most importantly, liaise with the rheumatology team about medication as you will probably need to change onto something else.

Have a look at the treatments pages on the NRAS website so that you can discuss alternatives with them too.

Keep us posted and best hopes for a good communicator!

Thank you oldtimer, It is always difficult to know just what to say and what to ask at an appointment. I just hope he is one that will listen to me as there are some who just fob you off or don't even answer a question.

I saw a RA doctor once and I had a list of questions, which only numbered four and when I got it out and said I had a few questions, she said that she didn't have time to look at that as she was busy. I reported her to PALS and they got back to me saying that she was retiring in two months and that she had asked to stay on in a part time basis but had been refused as there were too many complaints about her attitude. I mentioned it to my doctor and he read out the letter she had sent to him (I hadn't received one for some reason) and in it she put that "The patient bought along a list of questions which I refused to answer as I was too busy." My doctor said he couldn't believe the opinionated attitude of her and advised me to change to a different rheumy which I did. Even though I am not totally happy with the new one, she is never as rude as that. xx

Dear H-W,

I an very sorry to know that your have this problem. I hope you do get some answers after your appointment.

My rheumy did mention RA besides attacking our joints, it also may attack our organs. She said the organ that RA usually like to attack is the lung. I am not sure if this is the case in you.

I am on methotrexate since Jul 2014, leflunomide came a year later and just stopped recently because my RA is very stable, I am lucky that I don’t have this lung issue so far.

Have a look at the link below for more information before seeing your doctor. Personally I like to know the answer immediately.

mayoclinic.org/diseases-con...

holly-willow profile image
holly-willow in reply to Amy_Lee

Thank you Amy_Lee, I will have a look at it. xxx

Hello H-W, I was on MTX for 6 months and took myself completely off it in February, owing to breathlessness, preferring to opt for just Pred. I'm also having a chest X-ray next week. I have an implant relating to an aortic dissection 9 years ago and that is under the annual care of King's in London. Good luck with your appointment. I'm sending this as you have been on MTX. Best wishes.

Thank you for replying to me Katiecatweazel. I wish you all the best. xx

Omg you could be describing me with your post. I also have asthma and scarring from MTX. That is now off the cards now, It did clear by the time i had the next ct scan. I have seen the respiratory drs and nurses. I even had a nurse come out to give me exercises to improve my breathing. i have been told i have COPD as well. We can't win whatever we do darling. Hugs from me. xxx

holly-willow profile image
holly-willow in reply to sylvi

You are right about us not being able to win whatever we do. I have been told so many times that I am a complex lady and to be honest, I often think that they just don't know what to do with me except for palming me off onto another doctor or dept. xx

sylvi profile image
sylvi in reply to holly-willow

The last three years have been absolutely dreadful. All because a new consultant wanted me on a biological. Then the problems started and they are not over yet. I have failed now on three biologicals i think thats enough don't you xxxx

holly-willow profile image
holly-willow in reply to sylvi

I have failed on three medications that are not biologics and have often thought that biologics would be the answer, but when I have asked about them, the rheumy just says that they are not right for me because most of my problems are OA, but I do have some RA and surely if they just helped that, it would be better than nothing. xx

holly-willow profile image
holly-willow in reply to sylvi

Hi again sylvi, what exercises were you given to do? I am concerned that I wouldn't be able to do anything like that as I have spinal issues and need both my knees replacing as well. xx

sylvi profile image
sylvi in reply to holly-willow

It is just ways of breathing darling you can do tham sitting down. xxxx

holly-willow profile image
holly-willow in reply to sylvi

Thank you Sylvi, that is not too bad then. xx

Ask if you can be referred to a respiratory physiotherapist, H-W. It has helped me immensely and improved my lung capacity/deeper breathing. x

The trouble is that I have become very wary of phsyiotherapists now Neonkittie. I was seeing one about the fact that I had ruptured tendons in both shoulder, and was told that he was very good and so on. Every week, he kept on about how I had ruptured tendons in my right arm but not in my left and I had to put him right week after week. He would then look it up and agree I was right. It started off with the right arm being the worst but then changed to being the left arm and the pain never left me day or night. Then one week he got hold of my elbow in one hand and my wrist in the other and pulled and twisted it and I shouted out at the pain it caused.

After that, I didn't want to go there anymore so I rang them up to say I was going to stop the sessions for the time being. The next thing was that he rang me up and basically told me I was doing the wrong thing and that things weren't as bad as I thought they were. In the end I told him that the reason I was not going to have anymore sessions was because he had hurt me so much at the last session and he replied that he was sorry I felt that way, but that if I stopped going, then I would just end up being sent back there sooner rather than later. In actual fact I ended up having to have a shoulder replacement done and was told it should have been done earlier than that.

The spinal consultant has told me that physio will not help me much and I could do damage to my back by doing them.

At other times, I seem to have done well with physio and then just as I am getting somewhere they stop seeing me, so you can understand why I am wary of physios.

Hi H-W, The respiratory physio didn’t even touch me. Just demo-ed and indicated what she wanted me to do, for all breathing and huffing exercises and tests. She was/is recommended by my BUPA respiratory consultant. So many of us breathe to a lesser capacity than we should so it was very helpful to see her for a couple of sessions. x

I had ruptured knee tendons from a very aggressive orthotist in 2015 insisting he was right to do something, so understand you.

sylvi profile image
sylvi in reply to holly-willow

Here it is. THE ACTIVE CYCLE

1, REST- until your breathing is quiet and slow.

Relax your shoulders and upper chest.

2, 3-5 deep breaths,

With a quiet breath out.

3, Rest.

4, 1-2 huffs

. Half a breath in with a forced breath out with open mouth

. Use the noise you hear as guide to the presence of sputum.

. Only attempt to cler sputum by coughing if you doso with the minium of effort.

5, Rest- until you regsin control of your bresthing.

6, One large huff or cough.

Repeat the cycle as needed.

holly-willow profile image
holly-willow in reply to sylvi

Thank you Sylvi. xx

sylvi profile image
sylvi in reply to holly-willow

Your welcome darling. xxxx

Hi sorry to hear you’re struggling with breathlessness. I too have Asthma but only mild but on screening for new Biologics a few years ago I had a phone call from Rheumatologist to say they had found a small growth on my x Ray & would do a CT prior to referring me to Respiratory. I had been more breathless for past few years at this point & Asthma nurse had diagnosed COPD but then a year later a different Asthma nurse said it wasn’t. Anyway it was a long 6 weeks waiting but it turned out to be a nodule which are quite common with RA. I was well monitored but kept getting more plus ground glass effect which is inflammation. I swapped to Abatacept which was one of the meds that is better with lung problems. I had been on Methotrexate for 15 years but no one said that it was the cause. I think it was all down to repeated infections. The monitoring is mainly to check for growth but otherwise they leave the nodules alone. My monitoring has now stopped & although I can’t go back on Methotrexate I’m so far managing ok. RA is know to have the potential to cause lung issues but hopefully yours will be something that they just need to check on. I know it’s scary but at the same time it’s good you are being seen. It’s difficult to know what quest to ask when you don’t know what it is at this point. I’m sure they will do lung function tests & scans first. I wish you all the best with your appointment. Please let us know how you get on. X

holly-willow profile image
holly-willow in reply to Otto11

I will let you know how I get on Otto11, you sound like you have been through it and I hope you at least don't get any worse. I always thought that COPD was caused through smoking. When I told my rheumy about my breathlessness and about my cellulitis and leg ulcer, she seemed concerned about me coming off Mtx and Leflulamide because of the cellulitis and infected ulcer on my leg. She didn't seem concerned about the breathlessness at all and I was told that I could go back on the medications once the ulcer had healed. Although it has healed now, I have not gone back on the two meds because I didn't feel it was safe to do so. I must mention this to the respiritory surgeon tomorrow and see what he says about it.

Otto11 profile image
Otto11 in reply to holly-willow

The nurse made a mistake & I didn’t/don’t have COPD thank goodness. What I was trying to say was that a lot of RA sufferers get nodules caused I believe by inflammation as is the ground glass effect & scarring can be from that or infections. The nodules come & go ( well at least mine seem to) & as far as I’m aware unless the grow bigger than 10cm they told me are harmless. I’m hoping that yours will be something similar & nothing serious which is what I was trying to say. 🤞for you tomorrow. X

RA is known to affect other organs for some people. I was taken off methotrexate because of several chest infections and persistent cough. After stopping the Methotrexate and having antibiotics both cleared up. However this left me with asthmatic symptoms and I have been on inhalers ever since. After trying several dmards and several biological treatments, I am now on sulphasalazine and abatacept. I think the specific question to ask the respiratory doctor is will the scarring reduce after stopping methotrexate. There are differences of opinion on whether methotrexate can cause respiratory issues. I was told that it did in my case and so couldn't tolerate it. Other rheumatologists I have seen disagree and say it's the RA that caused it. Hard to get a definitive answer. Let us know how you go on. Good luck.

Thank you Biofreak. I have wondered that myself. It seems to be a case of "Is it the chicken or the egg?". xx

Sorry to hear you are having these issues- sounds awful. Hope your appt goes well today x 🤞

Thank you Kags, I have just written up all about what happened today. xx

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