A little good news ...............at last.: Afternoon... - NRAS

NRAS

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A little good news ...............at last.

Crusee profile image
16 Replies

Afternoon everyone.

I hope you are all ok.

A few months ago I posted a piece "am I Being premature in my excitement over biologic?"

I was aware that the process took,a little time and others on here confirmed that.About 3-4,wks ago I went to my rheumy nurse and had the DAS28 test ,various blood tests and a chest X-ray done.

The results are now all back.25 out of 28 of my joints are inflamed or sore ,chest X-ray was clear and most of my blood results were OK.I have a separate issue with CKD so a couple of the other blood results were what they expected but not a major problem.

Rheumatologist has confirmed they have applied for the funding and providing there are no issues I should hear just after Xmas if I can start using Enbrel and hopefully this will be "the one" for me.

Thank you to those who responded to my original post a few months back and explained the process to me.

Have a good weekend all.

Crusee

XX

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Crusee
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16 Replies
popsmith1874 profile image
popsmith1874

That's great news crusher hopefully the biologic does the business and helps you, I've been on Benepali since July and it's made a big difference to my pain

Crusee profile image
Crusee in reply to popsmith1874

Thanks popsmith1874 I am hoping .

Take care.

Crusee

XXX

Gigi71 profile image
Gigi71

Wonderful news, so pleased for you. Haven't liked to ask how things were going, just in case there was a problem. Wishing you and your family a very happy Christmas and a much better New Year. Hugs X

Crusee profile image
Crusee in reply to Gigi71

Thank you Gigi71

I was beginning to wonder what was happening myself and had to chase these results twice to get them.So when I am told I will get confirmation of funding after Xmas I will just be a little more patient.

Very merry Xmas and happy new year to you and your family too.

Take care.

Crusee

Xzx

Phoo2 profile image
Phoo2

Enbrel worked really well for me for years......hope it does u too...

Crusee profile image
Crusee in reply to Phoo2

Thank you Phoo2 .

I am hoping it will help me too.

But I have been told because I have so many other conditions as well then this may not be as effective for me as some others.

But I am willing to give anything a try.

Take care,

Crusee

XX

Nickijk73 profile image
Nickijk73

Good luck - I started Enbrel at the beginning of January this year after almost 2 yrs of being in absolute agony and having just about every side effect of any drug/drug combination they could throw at me - within just a month I (and my family/medical support) could see a marked difference already. I know everyone reacts differently,but for me,this has been the one that has finally given me a glimpse of life again - I'm actually arranging to see family and friends that I hadn't for almost 18 months because of the pain and discomfort I'd previously been in. Let's hope you have a positive experience too,as we shouldn't have to give up on life because of being diagnosed with a horrid disease/illness - it's 2016, not 1816!!

Good luck,and here's to keeping everything crossed for you

Nicki x

Crusee profile image
Crusee in reply to Nickijk73

Thank you Nickijk73

I am hoping this drug will make a huge difference to me after being thru loads of other drugs and the vile side effects that travel,with them.

I am also trying not to get too expected either ascI know how disappointed I will be if things don't go to plan.

My life has been on standstill for approx 18 months I just want to,have a normal life again even if it's just for 1 day.

Thank you for your response,I've got fingers crossed too,and will let you know how things progress.

Take care.

Crusee

XX

Nickijk73 profile image
Nickijk73 in reply to Crusee

Hi Crusee

Just rereading a few posts after noticing on your last one you said about giving up your job in banking because of it being stressfull - I completely understand,as I've been involved in the open outcry financial markets from '89 until 'end of '99,then in the back/middle office roles of just about every financial/commodity or energy market since,and it was here, that at the age of just 41 I had to take redundancy(along with rest of team) but it basically left me retired almost 20yrs earlier than planned,and as you say,the industry is crazy when it comes to the hours,so there's just no way I could commit to a job back there anymore,which left me feeling very down. Not sure if you were in the same 'line' of banking that I was,but I certainly understand why you couldn't commit to them again anytime soon.

As for Enbrel,how are you finding that? Has it been the one where all others have failed? I couldn't believe the difference I saw in such a short space of time..... I wasn't doing cartwheels or anything,but just being able to move my own arms and legs by the end of the first month is something to scream from the rooftops,and things have just gotten better for me where that's concerned. I still haven't had a proper 'remission',as two weeks after it all seemed to click into place,someone very kindly rear ended my car,which set me back about a year😩,but even now when I'm flaring,I look back at pics of how my joints used to be,and I still can't believe it was me,because I honestly looked like a different person,I still get swollen joints,but at least I don't look like the marshmallow man anymore😊

Nicki x

Crusee profile image
Crusee in reply to Nickijk73

Will send PM.

Crusee

X

Crusee profile image
Crusee in reply to Nickijk73

Having trouble with PM been trying since tea time to send one to,you but its just not going.

I seem to be on the open forum ok but not PM will send you second part asap.

Sorry havent been ignoring you Nickijk73

Crusee

XX

Nickijk73 profile image
Nickijk73 in reply to Crusee

No worries,I've been busy either being unconscious or tidying up after a messy pup.

Enjoy your evening and no doubt we'll catch up soon..... we've both worked with systems for long enough to know exactly how fickle they can be as and when they see fit😝

Night x

That is fab news and a positive note to end the year on. Being on biological changed my life and I feel immensely grateful for them. They've halted most of my joint damage. I am much less swollen and fatigue is not as bad. I am prone to colds and other bugs but it's a small price to pay. I wish the same for you (minus the bugs, of course!) 🙂

Crusee profile image
Crusee in reply to

Thank you Hidden

I am hoping for an upturn in this condition too.- time I had a break!

Thanks again.

Take care,

Crusee

XX

Nickijk73 profile image
Nickijk73 in reply to

Hi Hidden

It sounds as though we've had the exact same response on Enbrel,as I too have the same issues with coughs and colds,but would tolerate those over the other side effects i'd previously suffered time and time again.

Also Crusee ,even though I had a marked difference within the first month,it took pretty much up to the beginning of September for me to finally have all of my drug combination fall into place enough for me to think about planning my life again - albeit with different goals,but this is still something I couldn't,and would never have dreamed of doing just 2 months previous,it was almost like a switch had been flicked overnight in my case. I'd basically been an enforced recluse for the previous 18 months due to how ill and low I'd become from going through the awful routine of constant drugs that never worked,and side effects that made me worse than I was before!! It was such a shame 3 weeks into having the best time ever since being first hit with my symptoms at the beginning of 2014,that somebody decided to rear end my new car and put me back into a cycle of physio on a weekly basis,and more pills again!! Luckily no-one was seriously hurt,and it was just the shunt that caused my inflammation and previous back injuries to re occur,but I am now the proud 'mummy' to an adorable 8wk old Maltese puppy - I'd been thinking about an incentive for getting me out of the house and walking on a regular basis for ages,as I've really missed the gym and having any level of fitness present. It took me a very long time to come to the decision about getting a dog,as I've always grown up with large dogs(GS Dogs and Doberman crosses etc)so it seemed odd to go for a dog that will only ever be half the size of my cats,but at least this way,when/if I do have a bad flare,I'll still be able to manage her needs without putting too much on myself. I've become a member of the wildlife trust in my area,so now have free access to all of their parks and visitor centres,and now that I'm finally mobile again,when my partner is in bed sleeping during the day(he works nights) I can take myself and Minnie off to a different park,and we can both enjoy the wonderful world around us that I've missed for so long. All going well,it won't be too long before you can start planning for things yourself x

Phoo2 profile image
Phoo2

Take high dose vit c say 1000mg and u won't get colds anymore / it's like magic!! Hope that helps - -and good luck cruse - 18 months of suffering is appalling and I hope this helps to sort things out for u ...

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