Newly diagnosed with RA

[Pennylane-]

Hey,

I have been in and out of the doctors surgery over the past two years with various pain and swelling and was then knocked off my feet with a lung infection a couple of months ago, they discovered that one of my lungs is very badly scarred, after some blood tests I was diagnosed with Rheumatoid Arthritis,

I'm 45, I've been put on a waiting list to see a consultant, my appointment came through as at the end of November. I'm a chef and my job is very fast paced and active, I've been taking a high dose of codeine and inflammatory drugs to keep getting me into work, I'm also a scuba diver and live for my trips to the sea.

I was wondering if anyone else here has this disease, specifically whether it's attacking their lungs? How they deal with it, what I should expect and whether I will still be able to dive?

I have a month long diving holiday booked for April next year, I'm assuming they will start me on the meds in November but I'm worried that these will leave me open to catching infections, but if I don't take them will it be safe to dive?

Thank you in anticipation, I will appreciate any advice and/or information

 

[Ash600]

Hi @Pennylane- , so sorry to hear that you've been diagnosed with RA and that it has led to one of your lungs being compromised. How it will effect you regarding you diving, will probably depend on how much of the lung function has been reduced I suppose. But it will propably be best for your treating consultant to answer that question for you. Those and other questions would be best for you to write them down now, so that you can build up a list of of your concerns to discuss with your consultant come November when you have your appointment.
Depending on the type of treatmemt you recieve, you could be prone to infections, but then again, without treatment you could still be leaving yourself open to infections sadly.

There's some information here about lung damage and RA, which is known as interstitial lung disease

https://www.breathingmatters.co.uk/interstitial-lung-diseases/

https://www.arthritisresearchuk.org...ts/reports/hands-on/hands-on-spring-2009.aspx

This one is general info about living with arthritis and gives links towards the bottom for further detailed info on self management of this condition.

Hope some of this will be of some help.

 

[1964dodge]

i'm sorry to hear you have RA my mother had RA at 43. she slowly lost function went from cane to crutches to wheelchair to bedbound until death at 67 it's unfortunate because todays drugs would have made a huge difference in her quality of life. as bad as it is things are a lot better today the new drugs in most cases prevents RA from getting worse or at least slows down the disease a great deal. I hope your appointment goes well and don't forget it's not as bad as it was 20 or 30 years ago if you stress over it please talk to us we care but don't judge I hope you feel better and please tell us your progress

 

[may71]

Hi Pennylane

Sorry that you are going through this.

I'd recommend trying acupuncture to treat this. Arthritis is one of the conditions that acupuncture treats best. Acupuncture can be expensive though. I can give you some information about finding quality, low-cost care if you are interested (teaching clinics and community clinics).

The medical studies that I'm familiar with confirm acupuncture's effectiveness in treating arthritis. There's one study that found that 100% of participants benefited from acupuncture (I think the degree to which each person benefited varied).

Traditional Chinese herbal medicine might help too, as well as some dietary changes.

From the perspective of traditional Chinese medicine, there are different types of arthritis that require different types of treatment. It's also believed that diet and environmental factors can play a big role in arthritis.

 

[Pennylane-]

Thank you everyone, I've decided to go ahead with my trip, whatever the consultant says, I've read some blogs and it seems that I just need to be extra careful when ascending, and to be perfectly honest, I can think of worse ways to go. The only time I ever feel truly at peace, is in and under the sea and so I won't give it up.
I will enquire about acupuncture, thank you, and thank you for the links Ash and your memories of your Mum's experience Dodge.
I will let you know how quickly the disease progresses, the effects of the drugs and the problems I have diving as I think this issue may be of interest to other people with this diagnosis in the future.
Having a bad day today, a long weekend at work has left me hobbling around, tired and feeling sorry for myself, I'm going to take a couple of codeine and curl up with my dog.

 

[1964dodge]

the dog is better than any meds we can take I hope you have a great day take care of yourself I care about you

 

[may71]

I will enquire about acupuncture, thank you

You're welcome!

The only time I ever feel truly at peace, is in and under the sea and so I won't give it up

Do you wear a dive suit? From the perspective of traditional Chinese medicine, having your skin exposed to a lot of wet/dampness can make certain types of arthritis worse. So maybe if you wore a dive suit instead of skin diving, it would help.

I hope that things can get better soon!

 

[Pennylane-]

Hey May71,
Thank you for your suggestion, I wear a 5mm shortie usually, as I only dive on warm reefs but you're right, I should probably invest in a full length suit with gloves, I also read that it may be worth notifying the dive company of my issues and asking for extra help getting out of the water and my suit, between dives, thank you

 

[Pennylane-]

Just an update on the diseases progression: It seems to be varied depending on the hours I work and the time of the month.
I definitely already have permentant damage to my right foot, my left knee and my lungs.

On a good day I can get by with taking 3 x 30mg tablets of codeine over the day, if I don't take these I limp and rely on my good foot too much and this causes both knees, and/or ankles to swell and I can't get around at all.

On a bad day (a particularly long shift) such as yesterday I need to take 6 tablets. This morning after such a day, I have woken up and I can't put any pressure on my bad foot, my knees are swollen, my left shoulder is in a lot of pain (lifting pans of food) and both of my hands and fingers are stiff, my chest is tight and sore.

My doctor suggested I may need to change my work, not an easy thing to do at 45, I do have my level three, and so it would be possible if I did a teacher training course to teach, I am already qualified to teach level twos in work place settings but the money wouldn't be good enough to sustain my family.

I can't afford to take enough time off to do teacher training. Or retrain (I think that was unrealistic of the doctor, imagine someone telling him to retrain at his age!)

My appointment with the consultant is on the 21st of this month.

I get ridiculously tired but I combat it with huge amounts of caffeine on work days.

I think the consultant will want to start me on the meds/steroids etc but I've heard that they knock out 50% of your immune system and that scares me. To go from a ridiculously overactive immune system to a faulty one, yes it may stop all of the joint and lung pain but I almost never catch any other viruses/illnesses at the moment and ant cuts or burns I get heal at an amazing rate.
Better the devil you know? I guess it depends on how much permanent damage has already occured to my bones and how quickly the disease is progressing, I need to be able to stay on my feet and I'm buggered if my hands get much worse

As for the diving, I'm going no matter what, it's my brother's 50th and will his own health scares it may be the last chance we get to go somewhere that spectacular. So unless the consultant says I will definitely die, in which case although I'd still want to go, it would be too selfish to consciously do that to my kids, I will have to think again.
I'm 90% sure he won't say that, it depends on my lung x-rays. If they've gotten a lot worse, ascending without narcosis could be a serious danger.

 

[Pennylane-]

Just getting my thoughts in order, sorry for the ramble

 

[Walker]

Steroids will make you feel amazing for the time that you're on them. Just avoid long term dosing if you can. If you knock them down intermittently then you may have better luck. Like for your vacation / holiday dive trip, take the steroids and you'll likely feel freaking great during that time. Sometimes people end up on low dose every day steroid though and that really does kick your immune systems ass.

 

[Pennylane-]

Do you take them? Do they have any other side effects? Do they make you irritable? Any hair loss etc? I know the consultant will tell me all of this, but forewarned is forearmed, if I'm going to start them I don't really want him to say go away and think about it for another three months

 

[Pennylane-]

I can already be a dragon at work I'm not sure I want to inflict a dragon on steroids on to them all :/

 

[bobbob]

I can already be a dragon at work I'm not sure I want to inflict a dragon on steroids on to them all :/

Hi
Im being treated for a different autoimmune disease with second one suspected.
It might be worth looking at an anti-inflammatory diet. Clinical evidence shows that it can reduce damage and slow disease progression. Omega 3 is important and so Ive given up being a vegetarian and now have sardines a few times a week. Also look at anti-oxidant foods, like blueberries. There is also strong evidence that regular exercise reduces inflammation (just regular brisk walks should do it). But I know RA can make that difficult. I guess swimming/ scuba diving would be ideal.
hope this helps. R

 

[Pennylane-]

Thank you, yes I do keep trying to eat more healthily, and I have a dog who demands long walks

You know what they say about a cobbler having holes in their shoes? Because I'm always tasting everything at work, by the time I get home I tend to be satisfied with a pot noodle or a bag of Doritoes lol

I am determined to get back on track though and start eating healthily again. I am my own worst enemy most of the time, instead of buying a Red Bull on my way to work today I WILL get myself a punnet of blueberries and have a coffee

 

[Ash600]

There are potential side effects with steroids, but they can be managed quite sucessfully. What the responses are, will obviously depend on the individual response.
Yeah, there have been reports of "steroid rage" I knew someone who suffered from them, but like many effects, not necessarily guaranteed to experience them.
By reducing the over active immune system, it can help to reduce the levels of systemic inflammation being experienced. It is a common drug used extensively for both short and long term conditions.

Here's a link for further information in case you're interested.

https://www.nhs.uk/conditions/steroids/

 

[Pennylane-]

Thanks Ash

 

[Pennylane-]

I've woken up and my knee is the size of a football

I worked a long weekend and went to visit my brother last night, he'd drank a bottle and a half of whiskey over the weekend, he's been told not to touch a drop, I know he's very down

I have so much to do and no chance of doing it whilst I can't walk

Fed up

 

[may71]

That's awful, sorry to hear that

 

[Pennylane-]

Thanks May71,

Tomorrow is a new day, going to keep checking in on my bro