Depo injection

Toots

When I saw my doc at the end of July, he told me that my bloods had given no medical evidence that would quantify a steroid injection.

Back from docs today however and after looking at my latest blood results, he said we were good to go, so I have a sore bum now too!

What I learned today - July's bloods showed ESR at 16 which doc says is at the high end of normal, but results from 2 weeks ago had my ESR at 32. I know these are all just numbers, but in a silly way I was sort of glad to see 'proof' of inflammation in my blood results. Bonus that he was therefore happy to give me the depo.

Also seems I'm tolerating the sulfasalazine well so that's good news.

He suggested I take it easy for a couple of days and that I may be tired but wired. Ha, nothing new there then! I'm just hoping it works although he warned me it could take anything from 3 to 12 days to kick in. Keep taking the naproxen in the meantime but cut it out if I feel the steroid is working.

Anyone have happy depo stories to tell me? Will I be dancing on the tables in a couple of weeks after having successfully got a pair of shoes on without pain??

villier

Sorry OA I have toots, I just want to wish you well and hope that it works for you...........tc..............Marie xx

dreamdaisy

No happy depo stories from me but I can understand the 'I can do what I want' feeling very well because that is what the oral steroids did for me. You may feel like that but try not to do anything too energetic - your body will be lying to you because that is what the steroids do, they kid you that things are better when in fact they're just masked. If it does work, and you do feel some relief, then enjoy it and I hope it happens for you soon. DD

stickywicket

I love steroid jabs. I can't remember ever dancing on any tables (Probably too much wine ) but , on the few occasions I've had them, they've always done a job. I hope yours does too

Toots

Thanks DD, Marie and Sticky x

I'm grateful to you DD for your comments - a good reminder that even if the swelling goes down, I need to consider not pushing myself too hard, I didn't really consider it that way. I guess what I heard was 'be cured for a few months' and ignored the reality of that wish ;-)

I'm hoping that wearing shoes will at least be comfortable so that I can get back to work, the bursitis is driving me mad and stopping me sleeping to boot. x

maria09

Hi toots
I have had many many Depo injections over the last 4 years
Never in my btm always in my thigh I've also had them injected into my wrist and toe joints these work the best
I now have no benefits from them when given systemically any more my last one end of August didn't work
I hope they work for you
Maria

dibdab

Hi Toots,

Depo injections have always given me some relief, not immediately, but gradually over a couple of weeks I've realised that things are less sore and I can tackle stuff head on. Never danced on the tables sadly-but then I don't like hights and have remarkably short legs :? , so couldn't manage it even before RA! On the minus side- they keep me awake and give me fairly horrendous hotflushes for several days too.

Hope you get some relief really quickly.

Deb x

Toots

Thank you Maria and Deb for sharing your experiences, I do appreciate it.

Remains to be seen how things will work out, but am hopeful x

stickywicket

Me too, Toots. My understanding (right or wrong) is that, the fewer you have, the better they work. I'm sure it's not a universal law but it's certainly worked for me.

Toots

That's good to know Sticky, thank you. I had one into my knee joint in June and frankly, it was way worse before getting slightly better. So I'm really hopeful this does work! x

barbara12

Hello Toots I do hope this injection brings you some relief you deserve a break..fingers crossed for you xx

mazbaz

Hi there,

I was given 6 steroid injections earlier this year by Rheumy no. 1. I had one a month roughly from Dec 2012 to June 2013.
At first they allowed me to literally skip around the room!! I wore my heels and rode my horse all with great enthusiasm.
Beware though! .........................
After I'd had about 3 the effect started getting less and less and they would only last for 2 weeks or so. You do get imune to them.
Also, its not a good idea to have so many, the risk of tissue damage to your thigh muscle is fairly high. I was not aware of the risks at first but now I am better informed , if they offer me a steroid jab now I say No.

Toots

Thank you Barbara x

Maz, I have all sorts of visions of you on your horse now!! Thanks for the information though, very useful to know x

dreamdaisy

Steroids can be miracle workers but they mask, not cure. They work by thinning all body tissues (not just the inflamed ones) and this is why they should be rationed. It is a bind, I always felt so much better in myself when I was on pred (the injections did very little) but I now don't take them. I hope they won't be needed in the future, I will do my best to resist should the need arise.

I hope you are beginning to feel some benefit, they are lovely when they work! DD

Toots

Thanks for sharing DD. I know certainly it's not a fix but I'd be grateful for a little relief! Not feeling any benefit yet, but I guess it's early days, fingers crossed x

Boomer13

I hope it works for you soon Toots. It is nice to have some relief, even if it is short-lived. It only works for awhile for me, then problems come back. I had better luck with individual joint injections.

Best wishes,
xxAnna

Toots

Thanks Anna!

I think I'm still adjusting to the principle that not everything the doctor gives me will work like I want it to. Not sure if that's progress or not, but beginning to understand the possible realities!

dreamdaisy

Ah Toots, that is one of the biggest adjustments we have to make, methinks. I learned rather too late not to expect too much of the drugs I was given - the lows of the disappointment far exceeded the highs of expectation and I was a slow learner. Now I expect nothing and am usually pleasantly surprised that that is what happens.

I do not feel any tangible benefit from the triple therapy but I know it is controlling the PsA so I have to be satisfied with that whilst it lasts. You are getting the meds far sooner than I did and I hope that that fact will make a better difference for you. DD

Boomer13

Yes Toots, it is too bad that we all don't respond consistently to the drugs available. It's too much like a large experiment for me.

I'm in the middle of what DD described; the let down of high expectations that I can be "fixed". I'm trying now to focus on dealing with side-effects and keeping my expectations realistic. For me, like DD, I think the treatments are arriving too late, but you I hope, stand a better chance with your GP not waiting and getting you treatment/Rheum consult soon.

Is your appointment coming up soon? Apologies if I have missed it, my own stuff has the better of me at the moment.

xxAnna
ps, you will appreciate this: I'm typing this with gnarly fingers, in bed, a cat under one arm who keeps putting a paw on my hand (she wants it still for a pillow) and deleting sentences using the trackpad. I've typed some of it three times! Oh, the adversity!

Toots

dreamdaisy wrote:

Ah Toots, that is one of the biggest adjustments we have to make, methinks. I learned rather too late not to expect too much of the drugs I was given - the lows of the disappointment far exceeded the highs of expectation and I was a slow learner. Now I expect nothing and am usually pleasantly surprised that that is what happens.

I do not feel any tangible benefit from the triple therapy but I know it is controlling the PsA so I have to be satisfied with that whilst it lasts. You are getting the meds far sooner than I did and I hope that that fact will make a better difference for you. DD

Thanks Daisy x Having been pretty healthy most of my life, like most people I put my faith in the doctors and it's difficult adjusting to the prospect that there's no quick fix, if any. But I know you're right, my GP is ahead of the game and for that I should be grateful. I'm glad your PsA is under control, but wish it made you feel better!

Boomer13 wrote:

It's too much like a large experiment for me.

Yes, I'm beginning to understand this now. In fact I was explaining it to my Mum just the other day, as she keeps messaging me daily - how are you today, any better today? I know as my mother she just wants me to be well, but everything I've learned here meant I could explain a bit better that it's likely going to take time and experimentation. Maybe it's not a rat gnawing on my toes, it's a guinea pig!

Boomer13 wrote:

I'm in the middle of what DD described; the let down of high expectations that I can be "fixed". I'm trying now to focus on dealing with side-effects and keeping my expectations realistic.

How long has it been since you were diagnosed Anna? I'm sorry I can't recall. I'm just wondering how one gets to that point of being realistic. I can type here that I understand the process and that I know for a fact it's trial and error. But actually accepting that is proving difficult! I suppose it's something we all work through in good time.

I haven't had my rheumy date yet, although it should be in the next 4-5 weeks or so - referred at the end of July and the hospital indicated 12 weeks. GP did warn me they tend to put you on meds and say right off you go, come back in 6 months and we'll see how you're doing. :roll: So I'm prepared to hear that lol.

Oh bless your kitty, yes I totally get that! To the point where my touchpad has been disabled completely to avoid that exact scenario! I have one of my girls sitting on my lap at the moment, seems that trying to type around her is irritating her though, what was I thinking? :roll:

Boomer13

My "diagnosis" was a long drawn out affair. I had one wrist affected initially after a work injury. I saw various doctors no one was particularly concerned about it after multiple x-rays revealed nothing. That was four years. Then, I started having multiple joints affected and my GP thought it was reactive arthritis. He didn't refer me because he didn't feel I was inflammatory and, as I was battling for work-disability benefits I thought it best to stay with one GP (plus, I liked him). That was two more years believing it would get better with good self-care. When I did get referred, I went on a waiting list for a year because I wanted to see a rheum in a large city and affiliated with a university (I live rurally on an island). The rheum thought I was seronegative inflammatory, but I was delayed starting DMARDS another 6 months because of a gallbladder/liver problem. With my GP now trying to convince me I had fibromyalgia, and that I should not continue seeing a rheum, I ran to find a new GP, had a skin lesion biopsied and was diagnosed PsA just a few months ago, seven years after this started!! My rheum started DMARDS 8 months ago, so I'm really not much farther on than you, except the disease has had all this time to "work" on my joints and the damage is showing up now.

While my diagnosis took ages, I have a friend diagnosed with RA in three months after her symptoms began and started on DMARDS. Having an "on-the-ball" and cautious GP seems to be key, and happily you seem to have one of those. She was returned to full health for 20 years on methotrexate and sulfasalazine! She's 60 now and only recently had to stop mtx and start anti-TNF's.

I should have been more sceptical of my GP but I had put loads of faith in him and really thought he knew his stuff. He fed all my desires: that I would get better without DMARDS and that I didn't have anything too serious. I was terrified and really wanted him to be correct.

I'm working on not blaming my old GP; I should have been more inquisitive and sought 2nd, 3rd opinions and generally been more demanding. I'm responsible ultimately, as I made the decision to stick with him.

I read a lot about rheumatic disease but still, 7 years on I had never really heard of psoriatic arthritis.....

Really hoping things are more straight forward for you.

xxAnna

dreamdaisy

Anna? Don't waste your precious energies regretting what wasn't done and why - I reckon that hindsight is always a negative thing, we can only make our decisions based on what we know at the time. I lost a few years thanks to trusting a GP, my experience up until then was that GPs knew their stuff and had always helped me - now I know better and I will find things out for myself (but not tell them how to do their job )

Toots? I reckon you're doing OK with getting your head all around this malarkey. DD

Boomer13

DD, I reckon you are right on there. I'm going to print this off and tack it in my bedroom to remind myself....

dreamdaisy wrote:

Anna? Don't waste your precious energies regretting what wasn't done and why - I reckon that hindsight is always a negative thing, we can only make our decisions based on what we know at the time. I lost a few years thanks to trusting a GP, my experience up until then was that GPs knew their stuff and had always helped me - now I know better and I will find things out for myself (but not tell them how to do their job )

I'm working on it but haven't finished trying to kick my own a#@* yet. If my hips weren't so bad, I might be able to reach....

Toots

Yeesh Anna, your experience does indeed make me grateful for my GP. But as I said before, if you're usually healthy, you do tend to expect GP's to have all the solutions and I don't think you can kick yourself too hard for sticking it out as long as you did. I probably would have too. Besides, there's so much more information readily available now on t'internet etc, and having this forum has opened my eyes to the processes and helped to steady my expectations. something that may not have been available to many of you at the beginning. Whilst everyone is different, hearing from you all is proving invaluable to me and I thank you again for sharing x

Thank you DD, for your faith in me ;-) You've helped enormously, I love your no-nonsense say it like it is answers, thank you x

Hugs all round, I hope today is a decent day for you all x