Hey everyone,
The relief I’ve felt over the last six weeks since I had a steroid injection is starting to wear off. I’ve had about a 50% reduction in symptoms. I kind of knew it would but I was just thinking wouldn’t it be great if it didn’t, lol.
On the plus side, I’m reading this fantastic book, It really is a must read for sufferers and their carers. Thank you. X
If it did that well - why not ask them to continue with them?
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/956...
healthunlocked.com/pmrgcauk...
They are suggested in the 2015 Recommendations for the management of PMR
rheumatology.org/Portals/0/...
Yes, I’ve read the articles but unfortunately my arrogant Rheumy hasn’t. He said I can only have three a year. Better than nothing but not really adequate.
Can you not get a different one?
I remember having an appointment where I became a 2 year old again and just kept asking 'why?' like they do when they want an ice-cream eg Him: You can only have injections every 6 months Me - Why? this paper by Dasgupta and the drug company say differently. In fact he nearly killed me by stretching out the injections too long as they wore off but my adrenals weren't working, result I was very ill
I’m sorry. It’s all very upsetting. X
Yeah but it also gives me courage to fight for better treatment for others and those who come after me, almost like being a sufragette 
No, not easily any I fear a bit of, “better the Devil you know”.
My Depo Medrone injection is wearing off after 5 weeks, so sad, I was enjoying a bit more walking, a bit more baking, even a bit of pruning in the gardening! But rheumy says (will write a post soon), no more steroid injections, no more pred!! And that’s that!’
Why??!
sorry, too tired tonight…will post tomorrow…S x
What??? Why??? You can't just stop. What is his/her logic there?
Thanks for caring…sorry, have been sick, will post later. S xx
Mine only lasted 3 or 4 weeks max and I had such a battle trying to get them more frequently. The PIL from the manufacturer suggests they only work for a couple of weeks but docotrs don't read that, they confuse it with other steroid injections they're more familiar with. I did extensive research showing the cumulative load from the injections was better than being on Pred. They worked fantastically well for me and without the side effects of oral Pred but I was still forced to reduce the dose and then everything went pear-shaped. I am still so angry about it all as I have now suffered over 2 years of needless hell. Eventually I changed rheumie and even though the injections were reinstated every 4 weeks by then I was in a major flare and they didn't work any more and I've ended up taking massive doses of steroids ever since. All I can suggest is try and get a referal to Dr Mackie at Leeds. Probably impossible and even if possible would involve a very long wait, but at least she has learned from complex cases like me. And she's the most wonderful rheumie around, always trying to help, no wonder she's so popular
Hi, firstly, I’m really sorry for what you’ve been through. I know exactly the frustration you are talking about. I’ve been under this particular rheumatologist for 3 1/2 years because I was diagnosed with Ankylosing Spondylitis about 9 years ago. However, about 3 years ago I developed what I thought was a frozen shoulder. This developed over time to what my GP eventually thought was PMR and prescribed 20mg of Pred. I took them and most pain and stiffness was gone within 12 hours. Fantastic, I thought! I took it for three weeks but I gave up with it at that point due to horrendous side effects that literally left me feeling like life was no longer with living. I really do think that if it’d carried on I would’ve ended up with full blown psychosis. So, just after stopping the Pred I saw my rheumatologist and said that I was sure I had PMR. He said, you absolutely do not because you are too young - 52 now, started at 49. If I’d still been taking the Pred, he would’ve stopped it. He gave me a steroid injection for my shoulder and of course, it helped the PMR. After about 3 years of my getting worse and worse, becoming almost bedbound, definitely housebound, he ordered a pet/Ct scan. Lo and behold, PMR was there very clearly, Rheumy told me my only option was Pred. I said I just couldn’t manage it. I said what about steroid injections. He looked at me like I’d grown a second head and said, but you just told me you can’t tolerate them! So I said that I didn’t get anywhere near the side effects with the injections that I got with the oral Pred. He said, nope. You can have one three times a year! So I’m back to square one. This guy has no empathy. It’s been the most frustrating journey. I’m at the point where I finally gave in and asked for help so I now have carers coming every day. I find this utterly exhausting but at least I get a bit of human interaction and a shower every other day. The Rheumy wants me to try Methotrexate and I’m not wanting to be pessimistic, however, I suspect I doing tolerate it and I know from what I’ve read here that the results are very mixed.
Do you know if I can ask to be referred to Dr Mackie? I live near Brighton. I wonder if she sees people privately. I can’t really afford it but maybe it would be worth doing. X
You could try Rod Hughes in Chertsey - almost as good as Sarah and also very empathetic. He does private work too so you can see him quickly and he will often put you on his NHS list if it is appropriate and he feels he has something to offer.
thanks
What a horrendous experience you've had. Dr Mackie doesn't do private and is based in Leeds, I have no idea nowadays what hte chances are of gettig a referal to another part of hte country but no harm in trying. We shouldn't have to suffer like this, it's bad enough having the illness without having to fight for the right treatment and with the ignorant doctors too. At one point I did all my research on D-M injections including reading the actual leaflet that comes with them and managed to get a kind of case-conference involved with my then rheumie, Dr M and one other rheumie who has since retired thank goodness. Maybe that's another option, suggest to your rheumie that they talk to Dr M about her experience of treating cases like ours?
He wouldn’t do it. He’s so filling arrogant. He says the injections are exactly the same as the oral Pred. Not in my experience they’re not!
Nor in my experience but hey what do we know we're not qualified doctors we only live day in day out year after year with this horrible disease whereas they once read a bit about 20 years ago. Maybe another approach is what we often used to say to numpties when I worked in IT support - tell him RTFM! (Read the effin manual)
I’m very perturbed by all the NHS literature etc which states PMR lasts 2 years. I reckon I’m 3 years and 3 months in to this!
yes but the manual isn’t always correct - especially with PMR…..🤔
Yep, there are a lot of us certified long-timers on here, 11 years for me so far, and I was too young to get PMR at 49. Dr Mackie is on to the 2-year myth but it's wrongly well embedded in doctors' heads
Fair point
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