Tablets v's injections

[Singr]

Having a chat with a friend of mine who has rheumatoid arthritis and receives injections of 120 mg steroids every 3 months with none of the side effects I'm getting with being years on steroids. She asked the question, why can't we get injections like her? I've never thought about that before. Any pearls of wisdom why this is the case?

[PMRpro Ambassador]

It is possible to manage PMR and GCA using depot medrone injections and Prof Dasgupta did do a small study on it. It seems to work for some people but not others and in yet others it may work OK at first and then the efficacy wanes until there are problems. It is mentioned in the 2015 Recommendations.

There is a set of threads from Admiral06 who used injections and did a lot of calculation /investigation into the effects.

healthunlocked.com/user/Adm...

Possibly the biggest problem is persuading a doctor to use the approach properly. One lady came up across a doctor who wouldn't give them often enough and claimed they were limited as to how many can be given (that is steroid injections into a joint)and really got her into a mess, making getting thigs under control harder.

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

is the link to Dasgupta's study. However - you will note that the 120mg dose is every 3 WEEKS in PMR, not months.

[TheMoaningViolet]

I had an injection initially, it was miraculous the next morning and fine for a week. Then a sharp drop in effectiveness, levelling off for another week followed by a gradual decline. By the end of the week 5 (when I had my PET CT scan), I was as bad as ever. My rheumatologist suggested that if I wanted a reliable effectiveness, oral steroids are better. In retrospect, given the pandemic, I was glad not to rely on the injections which could not be administered at home. All of that said, if I had significan gastrointestinal problems, I would ask the question about switching to the injections.

[PMRpro Ambassador in reply to TheMoaningViolet]

One lady who used them for GCA because she could not take oral pred as a result of pre-existing stomach problems had her husband trained to give her her injections as they had to be done very frequently at first. She'd have done her own but couldn't reach!

[TheMoaningViolet in reply to PMRpro]

I guess my husband could have done it if necessary. I wasn't sure whether they would have given them to me to take home.

[Suet3942 in reply to TheMoaningViolet]

Me too Violet. I was started on injections but as you say they only lasted a week. I was very reluctant to take pred but had to give in.

[SheffieldJane]

What side effects are you talking about? I can’t help thinking that the worrying ones like steroid induced diabetes, weight gain, hypertension, cataracts would still occur. I am willing to stand corrected but it’s still in the body. I imagine it is better for the digestive system, though.

[Singr]

All seems plausible. If you are guessing when it’s going to run out of effectiveness that is no use. Also I can hardly get a chat or appointment with GP so I doubt they would effectively manage it. Just asking. Thanks all.

[PMRpro Ambassador in reply to Singr]

It isn't really a guessing game - they should be administered regularly, several weeks apart and it is shorter if you need a higher dose. But the amount the releases falls steadily from administrat - I think Admiral06 discusses that in one of his posts.

[Bennijax]

I started with injections of D-M when I was diagnosed in 09/19, but for the first 6 months I had 1 injection of 120mg which was too high a dose, I was spacey and agitated. The effects lasted 4 weeks and disappeared. Several months later I had one at 80mg which was far better for me. Finally early in the first wave of Covid my GP agreed to give me injections of 80mg every 5 weeks, and that lasted through last January 2021 when it was no longer effective.

As it was the second wave and severe lockdown in London, I was advised to start oral preds in March 2021. My GP couldn't do it every 5 weeks and I was acutely aware that the injections depended entirely on the capacity of the surgery and if I got a cold or Covid I couldn't go to the surgery to have the injection. I also worried about the waning effect so I began taking 7.5 prednisolone in early March and am now at 10, and not as happy as I was on the injections when they worked.

[PMRpro Ambassador in reply to Bennijax]

Interesting - that is 2 people I know now who found their response to the jabs went "off"

[Bennijax in reply to PMRpro]

as if the body got used to it and was demanding more -

[PMRpro Ambassador in reply to Bennijax]

I don't know - I suppose that could be one way of looking at it. But you ARE on a higher dose of oral pred than the depot injections are meant to provide.

[Bennijax in reply to PMRpro]

I know, I would have preferred to stick with the injections of D-M. I'm also finding it increasingly challenging to taper. Waiting until the flu shot and booster are over to attempt to taper again..... I really felt well on the injections, but their effectiveness just seemed to stop. That last shot in January 2021 was very disappointing.

[PMRpro Ambassador in reply to Bennijax]

Was it a different operator?

[Bennijax in reply to PMRpro]

Dear PMRpro, I don't understand the word 'operator' - can you rephrase the question?

[PMRpro Ambassador in reply to Bennijax]

The person who did the injection

[Bennijax in reply to PMRpro]

I can't be sure, it was the GP to start with, then one of his nurses. The last few times I am fairly sure it was the same nurse. She seemed to know exaclty what to do. I then heard from a few others that the effectiveness of the injections does start to wear off, but I don't understand why that should be. Has anything been noted by Dasgupta, do you know? But the real stumbling block is who gives the D_M injection as it is very difficult to inject it oneself by oneself into fatty tissue - ideal is the side of the bum.

[PMRpro Ambassador in reply to Bennijax]

Did they reduce the dose injected?

[Bennijax in reply to PMRpro]

the very first injectionwas for the standard 120mg. That dose was too strong for me as I'm 48 kilos and small. 80 mg was tried and worked perfectly so that was the dose used from March 2021- January 2021, given every 5 weeks.

[PMRpro Ambassador in reply to Bennijax]

Did that last one just not work at all?

[Bennijax in reply to PMRpro]

I don't think so, or possibly for a few days but I wrote in my PMR diary that I didn't notice the expected uplift.

[PMRpro Ambassador in reply to Bennijax]

How bizarre

[Bennijax in reply to PMRpro]

Really? I read somewhere that this happens. I spoke to my gp about it. I've been a little fearful that my body may want more and more preds and that is not the best direction to head towards!

[PMRpro Ambassador in reply to Bennijax]

I have to say - I would be suspicious that the injection was faulty in some way. You do need a smaller dose with the injections than orally because the bioavailability is 100% - it is anything from 50 to 90% from tablets. But it should work for a week or two even if you have flared.

[Bennijax in reply to PMRpro]

Thank you. I'm saving this conversation and next time I get to see my gp - and I think I actually will be seeing a new Rheumy in two weeks - I am going to ask if it is possible to resume the injections again, at what level of dose and frequency.

[Singr]

This is all very interesting folks.

[MissMinto]

I can’t take oral steroids and for a while had quarterly steroid shots in the bum in an effort to get my RA under control (not sure what the dose was). They worked really well for me and it was a relief to be free of all the usual side effects (weight gain, moon face and what my daughter calls ‘roid rage’) plus, none of the usual tapering hassle.

BUT I did suffer a compression fracture of T6 vertebra, have early cataracts and osteopenia despite taking calcium etc.

Should I have another flare of PMR I’ll have no choice but to ask for another shot, but they come at a price.