[Elaine]

Hello I use a wearable “check me “ wellvue device I bought on Amazon and it’s amazing – it keeps everything charted on an app which I find very helpful sharing with my pulmonologist- I also use it whilst flying to keep an eye on my oxygen levels as I use a POC in flight. I do have the Apple Watch also but I find the wearable one is much more accurate.

[Elaine]

Welcome Marissa-

 

its very hard to get our heads around all of these –

 

I have sjogrens, ILD and Antisynthitase syndrome also-

 

I was on the prednisone and Cellcept for three years- I gained 65lbs – it was awful-

 

finally my Dr at The Mayo Clinic worked together with my rheumatologist and pulmonologist to create an action plan- I now have had almost two years of having Rituxinab infusions and they have worked very well to the point I am off the Cellcept and the prednisone- the infusions you do one and then two weeks later another one – then you wait 6 months and do the same again- one then wait two weeks.

 

This has been life changing – my body has finally leveled off and not attacking – of course damage cannot be repaired but at least I am not declining as fast as the first two years.

 

I would highly suggest to look into the Rituxinab. It’s very expensive but if your insurance covers it give it a try.

 

I am in year five of my diagnosis.

Take care with the weight gain – I have since lost the 65lbs – because my pulmonologist at Mayo explained I wouldn’t qualify for a lung transplant being so overweight.

 

I am 47 years old and positive that medical miracles can happen.

 

sending hugs

Elaine

[Elaine]

Hello!

 

I am on Cellcept 3000mg per day and I just had my 5th Rituxinab infusion and going for my 6th one next week- honestly it’s been the best thing for me as it’s kind of helped stopped the progression (touch wood)  and my cough is at bay. I can definitely feel when the 6 months is starting to wear off as my inflammation starts up again.

The downside for me is I am allergic to the infusion so I need to take high doses of Benadryl or i feel very itchy and burning – but we have learned that the higher doses of Benadryl  make it so much easier and that only lasted 24 hours so worth it to have progression slow down.

 

I am very happy I did it and thankful my insurance pays for it as it runs $15-20k per infusion and you need 4 per year.

 

Good luck

Elaine

[Elaine]

I also use the wellvue wrist band – it’s very effective and helps me show my doctors truly what is going on- it’s also been helpful to recognize the signs when I am taking a deep decline in oxygen.

I highly recommend-

[Elaine]

Hello all- I am

not on OFEV yet but on a very high dose

of Cellcept – and recently I am having alot

of throwing up if I haven’t eaten well

before taking my meds- I have lost 44lbs which I needed too as gained 55 whilst on heavy steroid use- but food just doesn’t appeal.

 

I know I need to eat and try hard to eat – if I don’t take two Prilosec a day it’s even worse with acid reflux.

 

interested to see if anyone has any advice also.

stay strong everyone.

[Elaine]

Hello – I got an adjustable tempurpedic bed and it was the best thing we ever did- once I go into a flare where the coughing becomes extreme – sleeping upright is an absolute must.

I also found not eating late at night helped so much-

 

i also just lost 33lbs and that has also helped a lot.

good luck

The coughing is the absolute worst thing ever 🙁

[Elaine]

I have  an adjustable bed- it’s a life saver- highly recommend if you have difficulty sleeping flat – my cough as exasperated by being flat – best thing we ever did.

I also found not eating late at night helped the reflux that was set off the coughing.

 

 

[Elaine]

Hello! Lystra I am on 3000 mg of Cellcept a day and the two Prilosec help tremendously- if I forget to take it – it’s unbearable – I find not eating late at night helps a lot.

I also have an adjustable bed so I can sleep slightly raised also helps so much.

my doctors at Mayo don’t want to add OFEV just yet as they are worried about the side effects.

 

I am sorry you are in the same boat –

 

hugs

Elaine