steroid injections

[Redcottage]

today had steroid injection and Tod advised to reduce 20mg to 15mg

has anyone else had steroid injections

[DorsetLady PMRGCAuk volunteer]

Looking previous post, l’m guessing you mean a local injection into your hand for the issues you have. Some are more successful than others as we did say in that post, and as they are local, they won’t do that much for PMR as a whole…but may well help your hand.

As we also said, a drop from 20mg to 15mg is quite a step down… so just be aware you might feel a bit ropey.. not sure what other symptoms you have - but they might not appreciate the drop.

[Redcottage in reply to DorsetLady]

Injection in bottom

[DorsetLady PMRGCAuk volunteer in reply to Redcottage]

Ah, so maybe not the usual one I was think of for local issues then..

No experience of them, so cannot help. Hang on -you will get comments.

[Redcottage in reply to DorsetLady]

Thank you

[Redcottage in reply to Redcottage]

Should have said reduce from 20mg to 15mg in 2 weeks

[PMRpro Ambassador]

If it was a deep intramuscular steroid injection, you should be able to reduce the oral dose relatively easily. However, is your doctor going to use intramuscular injections ongoing to manage your PMR or is it just to help you get the oral dose a bit lower sooner?

The injections can be used for PMR but are not used very much, probably, Prof Mackie said today, because of the difficulty of ensuring regular injections which need to be about every 3 weeks as the effect as the last one wears off.

[Redcottage in reply to PMRpro]

I do not know what the plan but I expect it depends on the way my body reacts

[tangocharlie]

Yes I took them for a few years, They worked well BUT the problem is they actually wear off quite quickly. My rheumie at the time said they lasted 6 months but the Patient Information Leaflet said 1-2 weeks. In the end they agreed to give me them every 3 months which was too long an interval. Mine lasted about 3 weeks. So U went from boom to bust, a few days after the injections I was on top of the world for a few weeks and able to do anything - I even went on a walking holiday - but as they wore off it was terrible as the inflammation all came back. When I was forced to reduce the dose I was so ill, the inflammation snowballed and I ended up on a huge dose of Pred again. I wish you luck but don't think they will enable you to reduce any quicker as they don't cure anything. Let us know how you get on

[Redcottage in reply to tangocharlie]

Would appreciate you telling me what reaction did you have after having the first injection. I am wondering if I should try and go pravately and get a second opinion

[tangocharlie in reply to Redcottage]

On the first day felt like I'd been kicked hard in my thigh where I had the injection. Then nothing happened for about2-3 days and then i had such a boost I was hoping skipping and jumping like a spring lamb until it wore off then back to PMR stiffness and I also got some adrenal problems as my body saw the sudden withdrawal of steroids. They worked fantastic but aren't sustainable in the long run. but every case is different, maybe they will enable you to reduce your steroids. There is one case study, quite old now, by Prof Dasgupta in which he claims it is a good solution. Yet it hasn't become established practice despite the optimism.

pubmed.ncbi.nlm.nih.gov/956...

[PMRpro Ambassador in reply to tangocharlie]

Sarah thinks it is probably linked to the difficulty in getting regular and timely appointments for the next injection. She did look a bit when I told her of one lady who managed GCA with injections - pre Actemra and she couldn't tolerate oral pred because of previous gastric bleeds. Her husband was taught to give the injections!

[tangocharlie in reply to PMRpro]

Yes that's one of the problems. But it all started to go wrong when I was forced to reduce the dose after a while, despite my wishes as everything was going so well. And I remember i was even losing weight and got rid of the moon face. As a result the pmr flared up again big time and got so out of control I ended up on a much higher dose of Pred. Maybe it would work for 'normal' PMR but not the refractory type I've got?

[PMRpro Ambassador in reply to tangocharlie]

The chump you had at first "managing" you also caused problems. Once PMR gets set in and isn't well managed something also happens with the immune system and it runs riot, learning the bad pattern it gets into and being ever more difficult to calm down. Although there is this particularly nasty longlasting type, lots of us were not diagnosed or badly managed so I think there must be something there.

[tangocharlie in reply to PMRpro]

There do seem to be 'patterns' in us long-termers. Similar age at onset, way below the average, took a long time to get dx during which time as you say the inflammation probably set in, not treated adequately, no help available until I found this forum, gaslighted many times when I said I still had PMR after the mythical 2 years. The one good thing that has come out of this as a result of my dreadful experience is that like you and so many other lovely people on here and volunteering with the charity now I try and help others from suffering the same fate through education and pushing for change. And now I question EVERYTHING doctors claim is a fact eg how to treat the 'diabetes' that results from steroids (it isn't inevitable and can be solved by diet), osteoporosis treatment (adcal is useless and DEXAs can give false reassurance), etc etc etc.

[Afibflipper]

I’ve had quite a few, they worked for various lengths of time but, I wasn’t on oral steroids as well.

[Pixix]

Yes. I had a triple strength depo medrone injection into my bottom in December. Because I have multiple issues& needed steroid injections into hands, wrists, feet for OA, & into hip for bursitis (& OA), tendon tear in shoulder, tendinopathy in ankle and so on, my Dr decided to do one large injection into my bottom, & see if it helped. It did help all the issues, some for longer than others. It’s nearly 3 months now, so wearing off. It’s not the first time I’ve had it done, &, hopefully, not the last!

[Redcottage in reply to Pixix]

Had injection yesterday. May also be triple. Told to reduce medication to 15mg a day for next two weeks and then reduce to 10mg for following two weeks.

Concerned this is too quik

Today feeling giddy and concerned may have a fall

[Pixix in reply to Redcottage]

When I started PMR my easiest reduction was from 15mg to 12mg, then to 11mg. But it’s your choice. You don’t have to accept what your doctor says. But you will be best to keep them happy, too,,.why not contact him/her and explain you are concerned. Talk to the medics if you don’t want to follow their guidance,especially at the beginning! Later on, you will find it easier & there’s so much info if you read this site. But we aren’t doctors, it’s your decision whether to do what the Dr has asked you to do!

[DorsetLady PMRGCAuk volunteer in reply to Redcottage]

Were you not told to rest and take things easy today? If not, then please do so…

As for reduction advice… you can but try and see what happens.

[Lovesport]

Hello! I’ve also tried steroid injection into my bum whist being on oral steroids as a way to boost me not having to go up to bigger doses. They didn’t seem to have much effect on me whatsoever nether good nor bad. But, again, we all seem to react somewhat differently which keeps us all guessing!

[Redcottage in reply to Lovesport]

I appreciate you giving me this information

[Countrykitten]

I have Depomedrone injections on Rheumatologist's instruction instead of oral pred as that causes horrific stomach problems for me. It took a while to get them sorted out at GP surgery as the receptionists couldn't seem to understand the difference between these and the occasional joint injections and kept telling me I had to go on the (long) waiting list with everyone else! I finally got it all sorted and have a designated nurse who books me in for my next four weekly appointment each time. (I had to have one at the same time as I was taking oral pred to get me off it quickly.) They really help me.

[moonieboy9358]

Yes i had a steroid injections into my bum. They call it a bridge. The injection is absorbed at a slower rate than the oral. So I was told that it would make it easier for me to taper the steroids

[Hugh_Marc]

I had them once into a shoulder that id injured.

As you say about 3 weeks & the effect had worn off.

Apparently I was only entitled to 3 injections on the NHS but my GP kindly gave me 2 more.

To be honest the bit of reflexology I got afterwards did more good than the injections

[Redcottage]

Ost