LUPUS UK

Good news for new year

Hello everyone

Hope you've all survived the Christmas festivities and had a lovely time!.

Just thought I'd share this piece of good news I've had from fracture clinic. My three month check XRay has shown my foot has fully healed and new bone has formed!. This is particularly good because I 've taken daily steroids for years with calcium and bone strengthening treatment and developed mild osteoporosis as well!.My foot healed within the usual six weeks and the doctor said I'd done very well which pleased me greatly!.

The point of my post is to say that I know steroids come with worrying side effects , bone loss being one , but with the right management and treatment we don't have to suffer unduly from something that's so necessary to keep our symptoms at bay!. Hope some reassurance for newly diagnosed forum members!.

Happy New Year everyone. I hope it's a healthier year for us all.

MistyX

30 Replies
oldestnewest

Great news Misty that your foot has healed so well despite the years of steroids.

It is most reassuring for us all when we so often are given the info that steroids are bad news no matter what the dose. As you said we really depend on them , until they find something else out of that box of tricks they keep.

Hope you have a good New Year and had a very Happy Christmas! XX

1 like
Reply

Lovely hearing from you Cuttysark!. That's exactly why I posted to share that it's not all doom and gloom on long term steroids!. Hope you got your injection yesterday and you get good relief. I do hope 2018 is the year you sort your treatment out!. X

Reply

That's great misty. I'll pencil you in as one of our back three when the LupusUK XV take on ThyroidUK in the annual New Year derby then x

4 likes
Reply

Yes definitely Whisperit , hope your improving. X

1 like
Reply

Excellent!

More good news: When you are on 10mg or less there isn't half as much to worry about as they have been telling us!

medpagetoday.com/rheumatolo...

2 likes
Reply

That's a great article PMpro, thanks for sharing it!. It is important to share that it's not inevitable we're going to get all the horrid side effects because we've had to take them for a long time but it is down to the right care and management!. You must be rslieved seeing that for yourself. I do wish the safer long term dose was still 7.5mg as I'm stuck on that and not very well. Tried to go lower and it went disastrously!. I've Never been on 5 mg in 31 years!. It's so difficult!. Happy new year to you. Looking forward to seeing more helpful posts from you. Your a great asset to this forum. X

1 like
Reply

Thank you! The study was done because Eric Matteson (one of the authors) is concerned that patients are being deprived help because of groundless fear about pred. And what is the point of 20 years of rubbish life so we can live another few years? In pain...

At 7.5mg we must be at below the physiological dose (the amount the body makes in the form of cortisol) - the bioavailabllity (the amount we absorb) ranges from 50% to 90%. i.e. no-one gets all the dose and a lot of us don't get an awful lot really. Even at 10mg you aren't getting more than 9mg - is a mg really doing to do that much damage?

4 likes
Reply

That's interesting info PMpro!. I thoroughly agree with you about quality of life!. So important!. Luckily for us this proves thru research and clinics that steroids aren't as bad as first thought!. Thinking can change!. X

Reply

Delighted for you! So much scaremongering about steroids yet before their invention people with lupus could only expect to live 5 years......id have been long gone 😳

2 likes
Reply

Thanks Bronagh for your great reply. I would have been the same!. Hope your as well as possible. X

2 likes
Reply

Very pleased for you Misty 😀 Its great to have good news p, positive start for 2018 xx

3 likes
Reply

Thank you weathervane, that's why I posted!. Do hope your white cell count improves!. Happy new Year. X

1 like
Reply

Happy new year to you do ! White cell count up 2 point , hope it keeps going that direction. Xxxx

3 likes
Reply

That's fab news weathervane, hope it continues!. Onwards and upwards!. X

1 like
Reply

Great News Misty.

Happy New Year to you too.😀

1 like
Reply

Thank you Mew, hope you had a lovely Christmas with your daughter and your well. Happy new year to you. X

Reply

Great stuff Misty - thanks for posting and happy days to you! Xx

3 likes
Reply

Thank you twitchy. Hope you had a lovely Christmas and 2018 is the year you get better treatment. X

1 like
Reply

😍 YAAAY MISTY 👏👏👏🌟🌟🌟🌟🌟🥂🍾🕊

4 likes
Reply

Such good news Misty, I'm so pleased for you. I agree with you about the emphasis laid on keeping steroids to the absolute minimum regardless of the quality of life. I'm lucky that I am allowed pretty much to choose how much and how often to take. My lung consultant favours aggressive and early steroid intervention for his patients and this overrides the Rheumatologist's more conservative approach..

Happy New Year! Xx

1 like
Reply

Thank you Clareb for a lovely reply. I agree with you about different consultants having different attitudes towards steroids!. It's right that your lung doctor favours larger amounts sooner because of sorting breathing which is more of an emergency. My Rheumy is the same about them and worries more about side effects than my Gastro does although breaking my foot has made Gastro act because he's suddenly concerned I've been on 7.5 mg a long time and can't reduce!. About to have a colonoscopy to see if IBD has changed!. I think the Rheumy's and Gp's are more concerned because they see more people with steroid side effect consequences!. Hope your improving. Happy new Year. X

1 like
Reply

Great news for you Misty! I'm so pleased. The reassurances about steroids is really valuable.

1 like
Reply

Hi lupiknits, too right which is why I shared it on forum!. So important!. Happy new year. X

1 like
Reply

Wonderful News!!!!

Reply

Thank you leslieleisalX

1 like
Reply

It's lovely to read about positive good news experiences! And, yes, very reassuring for people who are concerned regarding steroids.

Happy Healthier New Year Everyone!

1 like
Reply

Thanks webar for your reply. I totally agree which is why I posted. I hope there will be more positivity posted on forum from fellow users in 2018. Happy new year to you. Hope your as well as possible and 2018 a healthy year for you. X

1 like
Reply

Fantastic news! So pleased for you! What a positive note to start the new year. I hope 2018 is a good one for you. Xx

2 likes
Reply

Hi Wendy

Thanks for your lovely reply. I hope you will have more positivity to share in 2018 with your health and group going from strength to strength!. I've just learnt that our C&C group in north Devon might be relaunching and I've offered my support. Can't go back to running it but can help . Hope it can be resurrected!. Might be asking you for tips!. Ha!.

I'm also hopeful of better treatment this year after undergoing Gastro tests first. So more positive posts to come I'm sure.

Hope you all had a lovely Christmas and best wishes to you Wendy for a healthy 2018. It's great you've got your better Rheumy consultant in place now and best of luck for reducing your medication!. Slow and steady wins the race!. Look forward to your updates. X

1 like
Reply

Thanks Wendy, hope same for you. X

1 like
Reply

You may also like...