Remission indicated: Well hi guys.  Just had my latest... - NRAS

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Remission indicated

Mandalou profile image
11 Replies

Well hi guys. 

Just had my latest consultants letter post  my mid March appointment. 

It says that I have had an excellent response to Enbrel and to continue with my current dosage and meds. 

My DAS28 has come down from over 7 to 5.9 and now is 2.8 my CRP is 3 down from 13. My ALT has returned to normal after lots of raised results with all the drug experiments. ( very pleased about that)  So with these indications he says I could be in remission. 

The bally trouble is I don't FEEL like I am even close to remission. The weakness and pain in my wrists and fingers is ongoing and I'm itching all over so much especially my arms ( possibly the Hydroxychloroquine maybe?) so that I am popping Benadryl or Piriton every day. 

The antihistamines make me feel like I'm floating in fog. Plus You know when just everything hurts? 

I've had an emergency Rheumy appointment with the nurse because of the itch and she said that the consultant would like me to grin and bear it because of the excellence of my response to everything else. 

So grinning and bearing it I am. Seems with this horrid disease there is a lot of grinning and bearing it! 

My consultant in the letter to my GP recommended he prescribe me an anti inflammatory to help with my flare ups. So do you guys have any experiences to share with what suits you? I'm not an Ibruprofen fan and though I get on well with Diclofenac I'm not sure they prescribe it much these days due long term side effects.

Essentially good news however despite ongoing aches and pains and am sending out all positive thoughts for good news and progress for all. 

Mx

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Mandalou profile image
Mandalou
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11 Replies
Barrister profile image
Barrister

I have had all over itching for about 15 years now ( diagnosed with PsA in 2013) and find the Telfast ( Fexofenadine) 180mg daily does the trick most of the time. It's a prescription only antihistamine and at that dose is especially for itching. Every now and then the itching becomes unbearable and so I add in another type which helps to calm it down. I've never got to the bottom of why I itch. I've recently started on Enbrel after failing Humira after 14 months and suffering some horrible site reactions which I am hoping will settle as Enbrel seems to be working. Can't help you with the anti inflammatories I'm afraid. Clemmie

Mandalou profile image
Mandalou in reply toBarrister

Thank you Clemmie, most grateful for hearing your experiences with itching and antihistamines. 

A trip to my GP is very much in order.

Mx

nomoreheels profile image
nomoreheels

Essentially good news but... with reservations. Grin & bear it isn't really the idea. If antihistamines are needed there's a cause & that to me doesn't sound right. The 'floating in fog' could be the ephedrine in your antihistamine, not helpful if you're to carry on as normal. It's great you're responding well but needing to grin & bear other things isn't so great.

I've been prescribed an anti inflammatory (NSAID) from diagnosis in 2008 & tried 4 or 5. Etoricoxib (Arcoxia) is the one I've been on longest, 4 years, but recommendations may vary. It's all so personal & dependant on your medical history. For example, I have family history of cardio problems so I need full Cardiovascular checks annually whilst on Arcoxia, I think it's recommended for any of the COX NSAIDs. Your GP should also prescribe a ppi (omeprazole or similar) to take with an NSAID, unless you're already prescribed one, or he may consider it necessary to increase the dose if that's the case. Some NSAIDs are enteric coated which is preferable but slightly more expensive so do check, my Arcoxia are but sometimes generic aren't. 

This link from the British National Formulary list those available in the UK evidence.nhs.uk/formulary/b...

Mandalou profile image
Mandalou in reply tonomoreheels

Cheers No M H,

Your experience is just invaluable and so appreciated.

Mx

caron6056 profile image
caron6056

Hi, I used to have Diclofenac, and switched reluctantly to Naproxen because of the side effects of Diclofenac, luckily I have found it just as effective, good luck!

Mandalou profile image
Mandalou in reply tocaron6056

Hi Caron, thanks so much. I have kept reading about Naproxen on here and am pleased to hear it suits you as well as Diclofenac. 

I shall bend my GP's ear when I can manage to get a blinking appointment! 

Mx

Mandalou profile image
Mandalou

Very grateful for all your advice peeps. 

Mx

beeckey profile image
beeckey

Hi Mandalou I had a good Rheumy who was always wanted to know how i felt was just as important as the blood test and for a doctor to expect us to live with a constant itch do not understand what that feels like i have had this itch for along time as so thank you Barrister for the name of antihistamine that has helped you 

Mandalou profile image
Mandalou in reply tobeeckey

beekey  thank you for your reply. 

Are you on traditional DMARDS or any Biologics? 

I hope you get relief from this awful body itch. 

Best wishes to you.

Mx

beeckey profile image
beeckey in reply toMandalou

I am Biologics tocilizumab infusions to start now injections but it is not working as well as it did.

Barrister profile image
Barrister in reply tobeeckey

You're very welcome Beeckey, hope it works for you. Clemmie

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