Jealous of Biologics: So I saw my Rheumy yesterday and... - NRAS

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Jealous of Biologics

phil76 profile image
phil76
β€’17 Replies

So I saw my Rheumy yesterday and I was hoping that I might get put onto a biologic but no 😞 I have heard such good stories about them.

I also suffer with MS and there is a risk it could cause complications so sticking with the with the huge number of tablets I take every day.

I know that there are people out there who are far worse off than I am but couldn't there be a simple pill that I could take that would make it all better, including my diabetes.

That's just a dream and I do alright so I'll stop moaning and go back to not letting it rule my life!

Thanks for listening guys X

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phil76 profile image
phil76
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17 Replies
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Jackie1947 profile image
Jackie1947

Sorry if your hopes were dashed as reading your story you must be disappointed that you didn't get biological treatment. I only passed the NICE test because I had tried many different pills in the past and my DAS levels were high I'm limited to choice of biologicals because I have latent TB and Rituximab is safe for me. You are allowed to feel bad about your lot and I wish too that there was a pill to cure all ills for you. Take care.

helixhelix profile image
helixhelix

I went through a jealous phase, convinced that biologics would miraculously change my life and cursing the cost-saving NHS for restricting them. But I did get over it.

Two things helped. One was reading people's stories that showed that one drug can be great for one person and rubbish for another - so there's no guarantee that they'd be any better for me than what I'm on now. And the other was a recent research study that analysed hundreds of other studies and came to the conclusion that combination therapy of traditional DMARDs can work as well as, if not better, than biologics. So if you're doing ok then try not to look too hard at the grass on the other side of the fence, and make the most of your your own patch.

But yes it would be lovely if there was a single pill that would sort everything out. maybe next century?

Matilda7 profile image
Matilda7

I injected myself with Humira this morning and have had a complete non day, my head felt so odd and I was totally lacking in energy. So when I started to feel a bit better I looked at the side effects listed on the document included with the pen. Seriously scary, looks as if I'm doing well only to feel jet lagged and headachy! I tend not to look at them until I need to.

If you can manage without biologics I'd say be pleased.....I wish I hadn't needed to have them. And I have the injection site reaction to look forward to over the next few days. And they seem to be interacting with the methotrexate and making me nauseous on the day I take it....so a very mixed blessing, as all these drugs are. On the plus side I have much less swelling and pain! But not being able to think straight is very debilitating. Hopefully it will wear off soon.

phil76 profile image
phil76 in reply to Matilda7

Thank you for your response Matilda7, I don't think I have heard any down side experiences before, I'm sorry that you are experiencing such nasty side effects and I didn't realise you could mix them with other dugs, such as methotrexate.

I hope your brain fog eases and you feel the benefits soon.

Phil

helixhelix profile image
helixhelix in reply to phil76

There are as many negatives as positives with biologics, just like the traditional drugs. The risk of serious infections is much higher, your immune system is more compromised that with the traditional ones so you have to take more care with unpasteurised food and so on, and there are some nasty complications that can occur - although rarely. Much more fuss when travelling as the drugs have to be kept cool.

And for most of them you have to take methotrexate as well to get them to work effectively.

So really try not to yearn for them...

Caspiana profile image
Caspiana in reply to Matilda7

Hello Matilda. I used to inject Enbrel everyday. I eventually switched to Remicade. It was a relief not to inject everyday because it really is literally a pain and the injection site horrible. I really sympathise. I hope you are feeling better today.

Sending happy thoughts.

Cas xx 🌸

Matilda7 profile image
Matilda7 in reply to Caspiana

I hope it was a slip of the finger and you meant every week? Thanks for kind wishes. Yes, my head feels much better today!

Caspiana profile image
Caspiana in reply to Matilda7

Every week. πŸ˜“ Not everyday. 😊

Preacherman profile image
Preacherman

The reason you weren't approved for bilogics is because there is a better medicine just for you coming along very soon!!! Keep Looking Up!!! And Keep Working On It. :)

phil76 profile image
phil76 in reply to Preacherman

Thank you preacherman for those words, a very positive outlook, something I could do with more of!

Phil

Preacherman profile image
Preacherman in reply to phil76

Your Very Very Welcome, We all could use a little more positive outlook. But believe it too, it does work :). It works for me, by "faith". For those of us how live in the states that are on SSD, check out the "LIS" program in your book. It's a great help for help paying for some of the expensive medications we take. Blessings.

hatshepsut profile image
hatshepsut

It's understandable to be fed up, when nothing seems to work.

. Problem is that there is no magiic pill that suits us all, we're all different, and even biologics don't always work......I'm on my fourth. It is a wretched disease, but take heart, you will find the right treatment eventually. Best wishes, M xx

sylvi profile image
sylvi

Phil your quite right there are others out there who are worse off than you,but it doesn't help your situation does it darling. I know as i have been feeling pretty lousy myself so i can sympathise with you. Giving in is not an option for us is it so we keep plodding along fighting.xxxxx

Caspiana profile image
Caspiana

Hello phil76 . I know what a pain it is to take loads of pills, so I don't blame you one tiny bit for moaning. You need to vent sometimes like all of us. It really helps.

You have all my sympathy. Whinge whenever you need to. Everyone here gets it. 😊

Have a great weekend.

Cas xx

Fra22-57 profile image
Fra22-57

Well I have had three biologics and none oh of them even started.Now I have got APS so they won't offer me another.

It is so cruel to have to suffer.It sure does age you.I go stir crazy.

Likeyou I feel so disappointed that more can't be done.Wish you well

Cathy777 profile image
Cathy777

I am sorry you have so many things to cope with. I have just been accepted for biologic but its been a long haul getting here and having exhausted many drugs which gave up working. I also have a few different illnesses and take so many pills each day. It would be great if we could have one pill for everything! It might come one day. But meantime its OK to feel fed up and moany. I do too. Just got letter from my freeholders solicitors threatening legal action against me and I really don't feel I can cope with it all. Sorry I am out whinging you!

Jora profile image
Jora

Oh you poor thing. That's a very unhelpful hat trick. I do wish there was one magic bullet for you. I'm afraid life isn't fair.

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