Been on Embrel since Jan 08. Have lung problems,scabb... - NRAS

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Been on Embrel since Jan 08. Have lung problems,scabby spots,no sense of taste,no tears, dry mouth. anyone else had had these side effects?

fossil321 profile image
6 Replies

My consultant says these have nothing to do with Embrel but I am not sure

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fossil321 profile image
fossil321
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6 Replies
jo100 profile image
jo100

Could you have sjogrens?

fossil321 profile image
fossil321 in reply to jo100

I have to admit I had already thought of that but my nurse dismissed it !! I find that having had RA for 25 years I know my body and disease better than they do. I have an appointment with my nurse next thursday so I will mention everything yet again!!

I was off Enbrel for 3 months because of surgery and the majority of my symptoms improved which is why I thought they may be side effects.

magglen profile image
magglen

I have been on Enbrel for several years and have not suffered any of those side effects.

I do hope you are being tested and examined for other causes. Keep at them!

Tillytop profile image
Tillytop

Hello Fossil

My question was going to be exactly the same as Jo's re Sjogrens - certainly concerning the lack of tears and dry mouth. I have Sjogrens secondary to RA and struggle hugely with my mouth and eyes. I also have a hoarse voice, and some kind of intermittent breathing difficulties which may be RA or Sjogrens related. Whether or not you have Sjogrens, there are some things you can do to help the dry eyes and dry mouth symptoms. So here are my "top tips": Because I find swallowing very difficult due to the dry mouth, and water is of limited benefit, I carry a bottle of Boots, Expert Dry Mouth Spray everywhere with me. It can be used as often as need be - in my case, often between every mouthful of food - and provides instant (short term) relief. If you do buy some of this, I have found that it is the same stuff as the Boots Dry Mouth mouthwash so if you buy the mouthwash and decant it into the spray bottles it is much cheaper. I also use Biotene Moisturing Mouthwash and Toothpaste which do make a difference for me. They are available to buy over the counter (although you do often have to ask for them in the Pharmacy) but they are expensive and I am lucky enough, these days, to be able to get them on prescription. Re the eyes - you really do need to ask for referral to an eye consultant for advice because long term dry eyes can cause scratching and scarring of the eye surfact and potentially infection too. In the interim, you may find that over the counter eye drops give you some relief and I use Lacriblube eye cream before I go to bed to try to stop my eyes drying out too much in the night. If you do see an eye specialist, they will be able to advise on the best eye drops for you and, if necessary, they can plug/cauterise the tear ducts.

I don't know if any of your symptoms are listed on the Enbrel patient info leaflet as possible side effects but, if they are, and if you think they may be related to the Enbrel, you may need to "push" your consultant to take your concerns seriously. I had appalling problems over a long time with Humira, all of which were known side effects of the drug, but the consultants refused, point blank to consider that Humira was causing me to be so ill. Eventually, after many months, it was reluctantly agreed that I should try stopping the Humira - and guess what? within a few weeks nearly all the symptoms had disappeared!

Really hope things improve for yu soon.

Tillyx

allanah profile image
allanah

Hi

I was on Enbrel and the side effects I know of are the usual increase risk of lymphoma which is quite rare. Headaches, nausea and respiratory infections and increase chance of TB. So maybe you want to press your Doctor about your lung problems if they are related to the Enbrel.

As everyone above has said Sjogrens Disease that gives you dry eyes, mouth etc is very common with RA and the treatments Tilly mentioned are really helpful. But it is important to be tested by the Doctor though as you will need to get a firm diagnosis as it affects all "wet" cavities even vaginal. So it would be a good idea i think to see the GP and tell him about those symptoms too!!! But that seems to be more due to just having RA than any listed side effect of Enbrel I have read.

I was stopped Enbrel ,not because of side effects, but it just didnt work for me and am now on Humira and Arava and am going to go to the Docs and get see the eye docs again as I am starting to get dry mouth eyes etc, so maybe will be visiting Boots as well, oh well at least I will get some more points on my card for Christmas shopping lol!!

Hope you get sorted soon and they get your pain and problems to feel better, and let us know what they say :) Axx

earthwitch profile image
earthwitch

There is an autoimmune type of pulmonary fibrosis. If you have ongoing lung problems it would be well worth asking your docs if they would do a lung xray, as well as lung function tests, just to make sure it isn't that. Also, are you on other DMARDS? They can also cause pneumonitis and pulmonary fibrosis sometimes.

The rest of your stuff does sound like Sjogrens - you can get eye drops, mouth sprays and other stuff to treat the symptoms of it if its a problem. You can also get little plugs put into the tear ducts in your eyes to stop tears draining away too quickly too (they are called punctal plugs) if dry eyes is an ongoing problem.

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