Well friends just got back from seeing the doctor down the hospital. What palaver to go through just to see a doctor.
1, rang nhs direct, got to give a load of details fair enough.
2, then someone rang me back from nhs direct and had to go through it all again. Was told that i needed to see someone and a doctor would ring me.
3, Some one rang me to tell me the doctor would ring but that they were busy. I understood that.
4, doctor rang from the hospital and yes i had to go through it all again would you believe.
5,got appointment for 3.10pm. quite efficeint i might say.
6, saw doctor. Now i am to take 8 steroids for three days,yes thats right 8 a day for three days. I have to ring my practise tomorrow and find out if my chest xray has come back. She mention something about a lung disease associated with ra, anyone know anything about that,would be interested. She gave my chest a good sounding and she was thorough that i can say. We were in there at least 15mins. She was very nice, she asked did i smoke and my words to her were "i watched my father die with emphesema and i have asthma so no i don't smoke". So here i am back home and none the wiser as to whether the chest has cleared up or not. She did say my oxygen levels were ok.
So my friends at least i've been seen and if anything goes wrong i can say that i have tried to keep on top of it. I don't think anything will, but you never know do you.
Take care everyone. Sylvi.
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I met a lady when I was in hospital getting my ankle fused who had RA and was also having ankle fusion (we chatted pre op).
Before I talked to her I noticed she seemed to have a dreadful cough, and I mouthed to hubby 'she is definitely a smoker'. Turns out she has a condition called Bronchialitis, and it was her first symptom of RA, she never smoked. I had never heard of this before, she apparently had it over 10 years. She said it was much worse in morning after she used her 'whirly bird thing' some sort of inhaler? She said every so often she had a bronchial lavage (wash out of bronchial tubes) and that gave her great relief. As RA is a systemic disease you can get inflammation anywhere including a suppose the bronchial tubes.
Sylvie, I am sure this is not what you have, as it seems a quite rare result of RA, I had never heard of this before. On the good side, she looked great
and she was in late 50s, she is permanently on steroids for her condition and seemed to be having a good quality of life .
Hope this is of some help and is only based on a chat I had with that patient.
I don't smoke either. I'm not worrying until i get the results from the doctors. I have enough to worry about without that. I'm glad i went at least i'm in good hands.
I hope the increase in steroids will relieve your chest and make you feel better.
I think it's what they said pneumonia and your have to remember that mtx makes you immunosuppressed, so it make take a while for you to get over this infection.
Be postive and optimistic and yes I agree no point in worring and untill you have to!
Fingers are stiff today, so take care of yourself
Sci xx
Happy 2012 my eldest taught me that it means smiling
Hi sylvi you're in good hands now and the steroids should make a huge difference. I know that RA effects lungs as it does with everything else . I read somewhere that the only part of the body it doesn't effect is the breasts! Don't know if that is true. The weather here today is horrendous so wrap up warm and take care xxxx
Hi Sylvi,
Glad you went to see someone been worried about you.
Firstly don't worry about the steroid dose I've been taking 40mg (8 x 5mg tablets) since early December and will be doing until my rituximab treatment sometime in January, and basically for 2.5 years now I've been taking doses between 20mg being the lowest and 80mg being the highest, so 40mg for 3 days should be fine.
There is a chance off a lung disease both from taking methotrexate and one from complications off ra, however I wouldn't worry yourself about that because in most hospitals when something is seen on the xray they contact you or your doctor within a matter off days or less, so fingers crossed this is just a chest infection.(even though that's been more than enough to cope with.
Really hope you are feeling better soon.
I had repeat chest and lung infections when I was taking enbrel, I was told after an x-ray that it was pneumonia (even though I'd been immunized against it) but with the right treatment and rest it cleared not very quickly though I think that's due to our low immune system already
Treesha,Julie, Thanks for you prayers and good wishes. Wish it did something with the boobies like shrink them!! Lung disease is something i don't need,but as usual if it happens i will get very upset tears the works and then i shall have to get on with it. If it is it will be hard to start with, but like everything else when you know whats wrong you manage and get on with it.
I've never been on such a high dose of steroids before, just hoping they work. We are seeing the doctor this afternoon so we'll see what he says. When i rang drs got told xray is ok,so thats one less worry for me thank god. Someone must be smiling on me somewhere..
Hi Sylvi I have had 2 months of continuous chest infections /coughing ...led to Pneumonia ...saw my specialist 22nd Dec said it is because our immune system is so low ...................... I am back up to 30mg steroids for a month then to come down 1mg every 2 weeks ..he says once you get so low you need to get back on your feet ..... I have felt better this last few days ... I am so mad though because I got down to 4mg per day ....been on .methotrexate for 4 months now ......it's a long battle............. chin up hope every thing goes well
Hi both my husband and i have been to see the dr with a horrible cough we've had since before Christmas which seems to be getting worse and she said i have an upper resp infection and gave me antibiotics and also an inhaler as i am having trouble breathing when i have a coughing fit. Its really helped and i have also stopped my methotrexate for 2 weeks now as it doesnt help when you have an infection. I've already off the Humira as it started to give me horrible rashes firstly on my feet and ankles and then when restarted to check it was that i got it on my face! its left me with scars now which i hope will eventually fade away. I'm now on day 4 of the tablets and am starting to feel a lot better already. Sounds like you have been through the ringer dont worry about the steroids they only help and i was put on 12 to start with and the pharmacist kept asking us if we were sure it was correct when he gave them to me he asked us 4 times before he would hand them over!!! Good Luck x
Thank you very much for your kind thoughts. I do believe i'm over the worst now,but still feel exhausted. I'm sure steroids will help,i'm seeing the doctor tonight and we'll see what he has to say and where we go from here. Have been in contact with my rheumy nurse ,so she says see what doc says. I don't feel as woolly headed as i have done so that must be a good sign.
bronchiectesis, is where the bronchial tubes are both enlarged so a residue of mucus is often left within.
taking enbrel and or mtx8 causes infection in these tubes because you have a low immune system, this was found out from a breathing test and an xray because i kept on getting chest infections.
dont worry about the steroids i was on 40mg a day for a couple of years till i took mtx8.
i too had chest infection after chest infection at the begining of 2011 but by taking 50mg of enbrel split into 2 lots of 25mg per wk, touch wood i dont seem to have that problem at the moment, hope this helps abit, happy new year to you.
Hi Sylvie, I'm not ignoring you, just got online and looks like everyone has already said it all, so will send hugs and agreements with them. All the best with your appt tonight. Chat later luv, XXXOOOLoret
Yes allanah,i'm over the worst thank goodness. Went to town on my scooter this morning just to go to the cobblers with some shoes and he was shut. then i popped into the charity shop to get bob some books and came home,i felt like i hads run a marathon. I'm resting now and i won't be doing much for the rest of the day. I think it might have been a trip to much,but at least i know how far i can go. the xray was clear,so thats something to be thankful for. The pain i have now in my chest and back is because of the infection has roughed up my lungs a bit and will take time to settle down.
Hi Sylvi. Hopefully the steroids will give things a good blast. I have noticed that a few people on here have lung issues, so hopefully they will be able to advise. RA like Covid seems to affect everyone differently. I hope this is just a short term issue for you. Take care ❤️.
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