Over 2 years of steroids will it stop?

[Offcut]

Over 2 years ago I was diagnosed with Temporal Arteritis. Treatment was 75mg of Steroids a day! Now that was a very strange time on how my body reacted to it? It did reduce the pain but it also attacked my skin and all those little bio's that happily co-exist on my body were attacked by the steroids. it was like being a teenager with a spotty face but all over me this time! After a long-drawn-out reduction process my Temporal Arteritis had not completely gone away! So, a 5mg a day for the next 2 years was the plan.

Overall, it was not a bad option to take and I did not have a lot of side effects from them? In fact, it seemed to have done me some good? I have not had any bad chest infections and for some reason my heart conditions have not changed in the last 18 months which has confused my PH consultant in Sheffield. As he was convinced it would have got a lot worse! My PH is still very high so I should have done something to the stress on the heart? Also, while this has been going on my Diabetes Type 2 has dropped to normal levels? (But I am still classed as Diabetic?)

Now it was decided by my Rheumy that as I still have a sensitive skull that I reduce my 5mg to zero over the next 2 weeks then a little wait and a blood test to see if there are any inflammation showing which will mean another look at what plan of action to take? It could mean a lifelong steroid plan? Or maybe something else?

I have managed to type all this while waiting in their queue for an appointment with my GP for a Telephone appointment for my COPD/RLD Review! I am now number 2 in the queue!

Be Well

[sassy59]

Having to take steroids is generally thought of as really quite bad but it does seem as if they can do good although not long term perhaps. Pete started on 30mg of pred back in 1991 resulting in osteoporosis. He’s been on 10mg per day for years now and I don’t see that changing.

I hope that whatever plan you’re put on, it works well for you. Take care Offcut.

[Offcut in reply to sassy59]

Thanks. I have to take a tablet for the bones once a week and then wait for an age before I can take anything else because of threat of osteoporosis?

[sassy59 in reply to Offcut]

Yes Pete had to do that. He has a different tablet now because he has osteoporosis anyway. Nothing was done until too late. Sounds as if you’re being well cared for. Xxx

[helenlw7 in reply to Offcut]

I’m permanently on steroids, which has its negative points, but on the plus side I can breathe and move my hands! I also took Adcal to prevent osteoporosis. I’m on a holiday from it at the moment because it can make bones break randomly - a friend broke a leg walking downstairs.

[Offcut in reply to helenlw7]

WOW!

[helenlw7 in reply to Offcut]

An osteoporosis consultant advised me to come off it for 12 in January, then I’ll have another bone density scan in January 2023 and go from there.

[Cloudancer in reply to helenlw7]

So pleased to hear that you can breathe and move your hands.I am also on prednisolone permanently -whilst the side effects can be life changing I would not be here today without this medicine.So I count myself very very blessed .Wishing you well.

[helenlw7 in reply to Cloudancer]

I agree with the advantages of steroids. I was able to carry on working for an extra 10 years with the help of the steroids, and now I’ve found an orthopaedic surgeon to replace my knee without me stopping the steroids - I was turned down by one in 2018.

[Cloudancer in reply to helenlw7]

Good luck with the knee surgury do let us know how you get on

[Offcut in reply to Cloudancer]

Thank you

[watergazer]

hi offcut. Use of steroid med more often than not results in osteoporosis. I believe people on steroids should have regular bone scans. It sounds like you’re doing well. Steroids always bump up my blood sugar levels. Take care x

[Offcut in reply to watergazer]

It maybe I have changed some of my eating habits that has done it but overall, I seem to have had a positive effect. Plus, we have a dog (Recue) that does not like a lot of walking which suites me

[pegbl]

Hi Offcut, pleased to hear something is working for you 👍 I like many other ended up with osteoporosis so I’m very wary of taking steroid. Take care. XxPeg

[Offcut in reply to pegbl]

I will bring this up as that has not been mentioned or at least I do not remember?

[djbctla]

Hi Offcut

What a very interesting read. Hope your GP appointment went well for you.

Bernardine

[Offcut in reply to djbctla]

44mins to get an answer. But then they had no idea what I was talking about or aware of the form they sent me?

[Cloudancer]

Wishing you every success in your journey to reduce your steroid dose.

I have been on prednisolone for over17 years and have the usual side effects associated with it.

Good luck and let us know how you get on.

[Offcut in reply to Cloudancer]

Will do, I am hoping the head pain is psychosomatic?

[Ergendl]

Good to hear from you, Offcut. That must have been a long telephone queue. All the best with reducing your steroids.

[Offcut in reply to Ergendl]

I started with "You are 17th in the Queue"

[Mooka]

Are you on the GCA/PMR thread? You may get more help in steroid reducing on there. 5mg to zero in two weeks sounds a bit quick to me when you have been on such a high dose. Good luck whatever you decide.

[Offcut in reply to Mooka]

Do you have the link?

[Mooka]

Go to my hub at the top of the page and click on find a community. Put GCA/PMR in the search box and that should take you there. They are a very knowledgeable group on people.

[Offcut in reply to Mooka]

Found it will repost on their thanks! Did not know it was there?

[Mooka in reply to Offcut]

I'm sure you will find them helpful. Some are also on the Vasculitis UK thread.

[Wendywiffle80]

If you let me know what area you are in I could send you the link to the support group near you

[Offcut in reply to Wendywiffle80]

Bedworth/Coventry

[Wendywiffle80 in reply to Offcut]

Coventry contact is Ann Hollingsworth [e-mail]. she may be able to put you in contact with someone near you. Its worth a go as they have great info and others in the same boat.Good luck

[katieoxo60]

Nice to see you Offcut, glad to hear most of your treatment is working. Sometimes long term drugs have to be altered as we get older/or been taking for many years. Your health seems reasonable considering the steroids, many people get osteoperisis as they get older without taking steroids. Steroids are the only drug as I understand it for Arteritis, my late husband had them for the more common polyateritis but only for six months. So heres wishing you well with any new regime you have to try. Trust your other conditions are stable. Isn't this sunshine good today? life goes on so make the most of a poor situation. Trust your wife is well too,time passers so things can change. Enjoy the rest of your day and hope the long telephone wait was productive.

[Offcut in reply to katieoxo60]

Yes, my health in general has kept the same so cannot complain. Breathing not good but that will never get better unless I have some new lungs? The wife has got Osteopenia so is being checked regularly for that. Other than that, we are both good and hoping you are well too? We now have a 6-year-old Standard Poodle (Rescue) Who was not walked at all and just used for breeding 7 litters! So, he is not a long walker which suites me as we have a great nature walk by us that has plenty of seats for breaks. Which I think the dog loves as much as me?

Be Well

[katieoxo60 in reply to Offcut]

Enjoy them dog walks , even if slow . Glad to hear all is well with you both. My freind has injections for Osteopenia once every 6 months so far no broken bones or deterrioration just a little slower on her feet these days. I have had the virus which flared my other conditions but this late Autumn sun as regenerated a bit of my old self back so onwards and upwards to spring .

[Offcut in reply to katieoxo60]

Glad to hear that keep it up