cortico steroid injections

[Bramble2000]

Hi,

I’m just wondering why steroid injections aren’t used in PMR? Is it because a high enough dose can’t be achieved? I have way less side effects with a steroid injection than Prednisilone., which I can’t take. Thanks

[DorsetLady PMRGCAuk volunteer]

I had a total of 3 injections over a 12 month period prior to my GCA diagnosis, because GP thought it was frozen shoulder.

The effects varied from reasonable result from first one for a few weeks, but as the inflammation built up, and pain relief was minimal , only lasted a couple of weeks and obviously did zilch for protecting my sight.

You really need a daily dose of steroids to control the cytokines shed every morning around 4am.

But it’s always worth considering the options …

[PMRpro Ambassador]

They can be - intramuscular depot injections can be used as monthly doses and they are said to be associated with fewer adverse effects. However, they aren't used a lot although they are mentioned in the 2015 Recommendations for the management of PMR. Doctors aren't familiar with the study and even rheumatologists are confused at their use, refusing to administer more than 3 per year - apparently unaware that this applies to intraarticular injections not i.m. ones. An injection every 4 months simply isn't enough.

If you can find a doctor who'll help there is no reason not to try them but it won;t be a single steroid jab - one will be needed ever month or so.

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/108...

There was a member of the forum who was on them and who did a personal study:

healthunlocked.com/pmrgcauk...

and tangocharlie used them for some time - having had the unaware doctor problem I mentioned and later they worked less well - she has told her story I think.

[Bramble2000 in reply to PMRpro]

I think this would be a great solution for me. I cannot take the oral Pred.

[PMRpro Ambassador in reply to Bramble2000]

You have the documentation - now find a compliant doctor. But it does have to be done right for it to work and you need to be able to guarantee the appointments if the GP does them. One lady who used them for GCA was allowed to have her husband administer them as they were about to leave on honeymoon - self-administration is not really on.

[Bramble2000 in reply to PMRpro]

why? I inject insulin every day and have injected many biologics too. Back in the day, insulin had to be “drawn up”. In Italy, most injections are self administered.

[PMRpro Ambassador in reply to Bramble2000]

No they aren't - I live in Italy! It depends on what injection it is and on the patient. I self-administer my biologic but that is sub, cut, in my stomach. I have also self-administered heparin. But others are done by the GP or the rheumy.

However - the problem is getting in a position to administer a deep i.m. injection into your buttock. Try it and see.

[Bennijax in reply to PMRpro]

i was diagnosed September 2019. The private rheumatologist gave me an injection of 120mg depo-medrone and that took al the PMR symptoms away for over a month. But he charged £250 per injection, so I tried to get along without it. Bad choice. Suffering a lot, I paid for another injection in January 2020 but at 80mg and that worked well.

Finally my GP agreed to continue 80mg injections every five weeks from May 2020, and considering it was the first lock down of the pandemic, very generous of him. The injections worked incredibly well, but in January 2021 I had the first Covid vaccine. The injection after that didn't work - incredible! By then the surgery load was becoming strained and I couldn't see that the support for my 5 weekly injections could continue. The GP agreed and I started prednisolone in March 2021 at 7.5mg. The second booster that April caused a flare and I only succeeded to drop to 7mg in the month after. I never go lower. Unfortunately the use of prednisolone isn't that good for me, also I've had one flare after another - I'm now taking 10mg daily and still aching. I wish I could go back to the injections, but with Covid interfering in their effectiveness (at least that was my experience), and no training to give my self these injections, its the oral tablets.

[PMRpro Ambassador in reply to Bennijax]

Judging by the few cases I have seen using the injections, they work well when used properly and reliably spaced but when something gets in the way it can be harder to get things under control again and that can really mess things up. There has never been a proper trial with them, just a couple of small studies. And given Prof Dasgupta did the first one back in the early 1990s, you'd have thought he might have done something in that direction.

[Bennijax in reply to PMRpro]

I agree. I wish he had…..if only to explain why they are not - in his opinion - the way to manage PMR

[PMRpro Ambassador in reply to Bennijax]

I think he signed his name to the 2015 Recommendations where i.m. injections are suggested as an alternative

[piglette]

Steroid injections are used for PMR for those who cannot take oral steroids. It is just a lot easier and cheaper to prescribe tablets than to have to have a trained individual administering injections. Cortico steroid injections can only be given by healthcare professionals.

[Bramble2000 in reply to piglette]

I know, I’ve had many but Rheumy never mentioned injections as a treatment despite my telling him I can’t take oral Pred.

[piglette in reply to Bramble2000]

What did they suggest if you could not take oral steroids? If you have had many injections what were they for?

[Bramble2000 in reply to piglette]

I have had steroid injections for bursitis, frozen shoulder and Ankylosing Spondylitis. My Rheumy said my only option is oral Pred which I cannot and will not, take.

[piglette in reply to Bramble2000]

Steroids were my saviour when I was diagnosed with PMR. Without them I could hardly get out of bed. There is no way i could have continued my life without it. I have had about fourteen side effects from them, but I was able to take things to improve that, plus a couple of hip replacements.

[Bramble2000 in reply to piglette]

I’m used to be housebound. It’s all about where we’re at as individuals and what we can cope with. Given my heart condition, insulin dependent diabetes, weight problems, depression and anxiety, it’s just too dangerous for me to take them even though it means I’m bedbound.

[piglette in reply to Bramble2000]

Did a doctor say you should not take oral pred and it was dangerous? I know several people on this board have similar problems to you and take steroids. I don’t understand the difference between you having oral and injected, particularly if you were to take the enteric coated ones.

[Bramble2000 in reply to piglette]

I have had many intra muscular steps injections with zero side effects pretty much. Oral Pred side effects are horrendous, for me. Why on earth would I need a Doctor to tell me what’s dangerous for me?!

[piglette in reply to Bramble2000]

Bramble2000, you really worry me. You say you are bed bound, is that due to the PMR or something else? You say that oral pred gives you side effects, but not injected pred, what sort of side effects? You are relatively young, what is the prognosis of your illness?

[Bramble2000 in reply to piglette]

my prognosis is the same as everyone else’s with PMR. I’ve had many many steroid injections spanning decades and have had no significant side effects. The side effects from the Pred are horrendous. My PMR was diagnosed via my symptoms, high ESR and CRP and clearly seen on pet/Ct scan. I’ve been bedbound for months due to severe pain and stiffness but the steroids are even worse for me. I’ll just have to ride it out.

[piglette in reply to Bramble2000]

So you are saying you are bed bound because of the PMR? What are the horrendous side effects? Is your doctor happy for you to stay in bed?

[Bramble2000 in reply to piglette]

yes he’s happy. Pred is the only treatment, apparently

[piglette in reply to Bramble2000]

He is right, steroids are the only treatment for PMR. I am not sure that staying in bed all the time with no help for the PMR is very good for your health. You are also laying yourself open to GCA too, which could affect your sight.

[Bramble2000 in reply to piglette]

then they need to give me the injections then. Taking steroids for years on end is horrendous for health. Personal choice

[piglette in reply to Bramble2000]

I cannot believe that they are letting you lie in bed for the sake of giving you a drug. There must be more to it than that. What does your husband say?

[Bramble2000 in reply to piglette]

what husband? There isn’t more to it. I’ve been told by the consultant the treatment is Pred. He knows I cannot take it. I’m in the UK. We get very little in the way of choice.

[piglette in reply to Bramble2000]

You have been diagnosed with PMR, so you should be prescribed steroids. What are your rheumatologist and GP suggesting? They know that lying in bed and no steroids is not a good idea, what are they suggesting?

[Bramble2000 in reply to piglette]

Pred

[Bramble2000 in reply to piglette]

I’m really sorry but I can’t carry on this conversation with you. Good luck.

[piglette in reply to Bramble2000]

😢😢😢

[Pixix]

I have steroid injections in my shoulders, as well as daily pred intake. But I have 7 other medical ‘complaints’ and my shoulders were bad before I was diagnosed with PMR! I also had 3 car crashes which involved head/neck/shoulders. Have you had your pet scan now, & results, please? From your bio it says your rheumy says you don’t have PMR, but perhaps you have an update? I know mine does, as it’s two years old now! Or perhaps as your GP says you have PMR, that is enough to get treatment for it? I’m interested as, after 3 years, my GP feels I either have more going on as well as the diagnosed 7 items, or maybe I don’t have PMR & have RA. A years wait after urgent referral to rheumy atm, so looking around to see what other folks are doing. You’re probably one of very few here on this forum who aren’t taking pred, I think.

[Bramble2000 in reply to Pixix]

from what I can tell, about 20% choose not to take Pred for whatever reason. PMR has indeed been confirmed via the pet/Ct scan. I too have numerous diagnoses including frozen shoulder, fibromyalgia and Ankylosing Spondylitis. The AS has been ruled out as the cause of this and I can tell the difference in the pain. Rheumy says the only way to “get better” Is the Pred. I’ve tried twice and I simply cannot take them. I want the steroid injections but I bet he’s going to refuse. I’ve had many over the years but of course they need to be monthly to be effective. Happy New Year to you.

[artfingers in reply to Bramble2000]

I would push, then, for the injections as you need some relief. Hope he will do it!

[Bramble2000 in reply to artfingers]

yes, so do I ! X

[Pixix in reply to Bramble2000]

PMR Pro…can you help me, please? How does PMR ‘manifest itself’ on a pet/Ct scan? How is it ‘seen’ and what type of scan? Interested as medics are querying whether I have had PMR for 3 years or it was something else (or PMR plus something else!) I could push for a pet/Ct scan for diagnosis (see Bramble2000 reply to me above, please). I’m sorry, but I’ve committed the cardinal sin…asked this before looking at FAQs! I’m struggling atm, apologies! Thanks, S x

[Bramble2000 in reply to Pixix]

here you go. It’s easily seen and definitive

Pet/Ct showing PMR

[Pixix in reply to Bramble2000]

Thanks, this could help me…I’ve asked PMR Pro below. I can’t imagine not taking the drug that allowed me to walk again, & it confuses me that you can’t take the drug orally, but can have it pumped into your body! If your body can’t take pred it’s sad, but having it orally or by injection will have the same bad (I assume) effect on your body, surely. Most people would prefer a monthly injection, it will be interesting to see what happens! I think I listed my ailments in another post we both commented on…fyi I have fibromyalgia, polymyalgia, essential tremor, acute sciatica, a spinal tumour, hypermobility, residual injuries from 3 car crashes, osteoarthritis and the muscles attached to my hip are growing bone on them. Now there’s possibility it may be spondylosis and/or RA, too. Or/and other stuff. Time will tell! Well, if I ever see a rheumy…a years wait here! Happy New Year to you, too!

[Bramble2000 in reply to Pixix]

it’s well documented that oral meds, steroids, have much more side effects than injected steroids. That’s all there is to it.

[Bramble2000 in reply to Pixix]

nhs.uk/conditions/steroid-i...

[Bramble2000 in reply to Pixix]

nhs.uk/medicines/prednisolo...

[Bramble2000 in reply to Pixix]

you can see below the difference between injected steroids and oral regarding side effects. Also, they are completely different drugs. I get a few, mild, side effects which are short lived from the depo. The Pred side effects, for me, are dramatic, devastating, long lasting (as in side effects are there throughout treatment), and dangerous.

Also, I’m used to being housebound. I have been for many years. Having been through significant trauma, and suffering from PTSD, I simply cannot take a drug that makes me feel even worse, even if it gets rid of the PMR symptoms. I’m truly glad that the Pred works for you, but it’s not for me.

[Pixix in reply to Bramble2000]

Actually, it doesn’t work in my favour at all. The side effects are dreadful, steroids intake nearly ended my 40+ year happy marriage this year, & I can’t wait to be shot of them. Oh, no, that wasn’t my worst side effect, either! Plus, I was overweight from taking them through years of lung trouble (for which I am now in lockdown each winter for at least three months), and now need to lose four stone in weight. I get no side effects from steroid injections, but as you say they are completely different drugs…so I don’t see how it can work for PMR…but I can see how it helps my arthritis and some of my other issues.

[Bramble2000 in reply to Pixix]

fine

[cranberryt]

I would think the sheer number of injections would be prohibitive. I have pain in my neck, both shoulders, both hip flexors and sometimes it works it’s way to my knees. That is a lot of joints for injections. and most people have more than one achy joint with PMR.

[Bramble2000 in reply to cranberryt]

it’s one intra muscular a month. I already inject myself 30 times a month.

[Bramble2000 in reply to cranberryt]

it’s not a joint injection