Still waiting (2): Still no letter from the hospital... - NRAS

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Still waiting (2)

Still no letter from the hospital about my foot op.

Had my CT scan on Monday - quite fascinating - all the lights whizzing backwards and forwards and a voice telling me when to breathe in and out. Seen my consultant today and it is the MTX which has caused the lung inflammation so I am off that permanently now. He showed me the cross section of my lungs which was interesting and pointed out the area of inflammation. He is also referring me to the chest consultant at the main hospital in Norwich to confirm his findings and treatment and to ensure there is nothing else going wrong. I will be on steroids for up to 2 months to get rid of the inflammation.

So at least I know what it is. Apparently a reaction to MTX usually occurs within months of taking it - I have been on it for some years so unusual for a reaction to occur at such a late stage. But I always did things differently! That's actually also my old Uni motto "Do Different"!. Lovely hubby drove me over to the clinic and also for a bit of moral support.

Son coming up later to try and mend my recliner chair (he is an electrician) as it has stopped working. We have changed the fuse in the plug but still doesn't work so he is coming to have a good look at it. I do miss it.

So hope the steroids do the tricki and get rid of the inflammation and I will stop being breathless again.

LavendarLady x

9 Replies

Hi LL,

I had exactly the same thing about 4 months after starting MTX.I was told it was Pneumonitis caused by the MTX, and it was stopped immediately. He gave me a two month course of steroids and some anti biotics.(just in case)

It all cleared up pretty quickly and I felt better within a week.



Hi Lavendar Lady,

I had a similar problem 4 years ago when on Mtx - mine turned out to be inflamed rheumatoid nodules in the lungs and took 8 months of high dose steroid and some other meds to settle down. It's horrible being breathless so I hope that your problem resolves itself very quickly:-}

How is your young labrador doing with his gun-dog training now? Am I correct in thinking that it's Berry in your pic?

Cece x


Hi Chappy and Cece, thanks for that. Will start on the steroids tomorrow and he says I should begin to feel better very quickly. Must admit I feel better not being on the MTX which I always hated having to take although the injections were far better than the tablets most of which I threw back up again!

Have just had the post delivered and surprise, a letter from the local hospital sending me the pre op assessment appt for the 14th November for my foot. So the bad vibes I have been sending to the hospital, have clearly paid off. Must be something to do with Hallo'een.

Son has also just been up and fixed my chair as well so all systems go now! It looked as if something had come unplugged and got trapped underneath so he has sorted all that out now.

Cece - Berry is fine - that is him in the pic - gorgeous boy - he starts another course of training in the Spring of next year but we continue with his basic training through the winter months anyway. Still waiting to hear if the friend who would like to take Berry shooting wants to do so but haven't seen him for some weeks as we have been away a lot at weekends.

Take care everyone. LL x


Hi LL, I know it's good to know the answer, but , if you can't take MTX, what is the replacement? Or do you have to wait to see what happens for awhile? Certainly do hope you can speed right through the improvement with your lungs. That is scary! <3 Lxxx


LL,hello from me. I am glad you have had your letter from the hospital. It looks like it won't be long now for you op on your foot. Soon you will be runner round like a youngster. I am really pleased your back and posting as i have missed you very much. Love from


The new biological RoActemra (Tocilizumab) which has put me in remission in weeks is supposed to work with or without MTX. I'm currently trialling this monthly infusion drug in a study to monitor the effect of MTX withdrawal. I hope I'm in the MTX taper down group. Although 25 mg MTX has never bothered me yet I often wonder whether I'd have more energy without it. My DAS score is now < 1, my CRP is < 1 and my ESR is 2. All swelling, pain, and stiffness has disappeared. Never had figures like that even on steroids. Hope they make the sub cut injectable option available soon. Would this drug option be appropriate to your particular circumstances ?


Hi all, I don't know what is to happen yet. I think my Rheumy is concentrating in clearing up the inflammation in my lungs before he considers anything else. I am still on Enbrel each week and take a Nurofen and Paracetemol to back that up if in pain.

Harry I am pleased for you - the scores are great. Mine are much higher than that at present. Don't know whether he will put me onto anything else yet - he has mentioned Rixumitab in the past but we have not taken that any further yet.

Thanks Sylvia, hope you are feeling much better now. Love LL x


Hi LL all a bit scary for you at moment. Rheumy seems to be on the ball sounds like you will be sorted soon.

Here's hoping your op goes smoothly. xxx


Hi all, not been put on any substitute for the MTX yet. Think my Rheumy wants to get the lung inflammation cleared up first. Had the first lot of steroids today. Wrist and hand flared yesterday - still very painful today but have taken pain killers to help. At least I can open my hand now which I couldn't do earlier or hold anything at all.

I am very lucky with my Rheumy - he is brilliant and I am glad to be with him. If anything goes wrong, I only have to phone and he fits me into a clinic for treatment wherever he happens to be in the County or I can e mail and get advice back via e mail or a telephone call.

LavendarLady x


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