okay i give up, steroid it is :(

lizzieuk1

So many know my ra traumas over the past 2 years and started anti tnf 4 weeks ago. I was hoping there would be a good improvement by now but alas after an initial improvement I am at a stationary state.

This weekend is the last straw had to help a neighbour with a sheep who had lambs 'stuck' giving birth and she had no idea how to deal with things so I was called to help (having done lots of lambing), well my poor hands were so weak I needed someone to pull whilst I rearranged the lamb coming out was v frustrating but great result for the sheep with 2 strong live lambs & saved neighbour a very costly weekend vet callout, however my poor body is now totally wrecked, everything is screaming and I am at the end. Think she would have lost the lambs if i hadnt gone so am glad i did but ahhhhhhhh its knackered me.
I have been trying to avoid another depomedrone steroid as have had so many over 2 years, last one only 2 months ago and I do worry about the side effects having had so many but having needed naproxen and high dose cocodamols all weekend I fear I am going to have to get the steroid



Feel like I have no real choice left but heyho I suppose at least it may help for as bit.

DebbieT

Hi,

I don't know ure situation but I wonder if your pain management needs adjustments rather than just injecting more steroids? Co-cos aren't always the best at pain control believe it or not. Id ask either ure gp, rheumy team or pain clinic for some immediate help!!
I, personally, find tramadol slow release works best with an anti inflammatory & top up with paracetamol, we're all different tho :?

Hopefully someone with more knowledge will be along & post to you very soon.
I wish you all the best & congratulations on the deliveries x

stickywicket

lizzieuk1 wrote:

I have been trying to avoid another depomedrone steroid as have had so many over 2 years, last one only 2 months ago and I do worry about the side effects having had so many but having needed naproxen and high dose cocodamols all weekend I fear I am going to have to get the steroid



Feel like I have no real choice left but heyho I suppose at least it may help for as bit.

Realistically, I do think you have a choice. Please excuse my plain-speaking but, lizzieuk1, you have RA and to me you seem to be almost in denial. You are still flaring following the birth of your second child yet are delivering lambs, looking after two horses and stressing about your work. I don't understand how anyone with RA can hopeto do all that. Sometimes we just have to say no. If you can just ease up for a bit maybe the meds will have a chance but, if you push yourself to your limits and beyond routinely, your body doesn't stand a chance.

lizzieuk1

Thanks both,
Debbie I haven't tried tramadol but have been on naproxen and paracetamol, have just had to stop the naproxen as its destroying my gut lining and am now taking stomach protect ant but until it settles gp has said to hold off the naproxen as she's worried about an ulcer I will call and ask about tramadol though as I need some relief as am really struggling with my toddler.

Sticky I hear what ure saying honestly I have been doing very little- well for me anyhow perhaps I need to reassess!!
my horse is being ridden by a friend and lives out coming in when he wants so the most I do with him is drive about on the lawn mower pulling the trailer so hubby can poo pick the field twice a week.
Admittedly I did do a bit with the pony one day last week but have given that up as my hands were sore after so my mum and oh are now doing him too- he's no trouble and lives with my horse he's for my niece and son to share but there's no rush so he can just keep mine company til I'm well enough to do more. The lambing situation was a mistake for me i agree, but I just couldn't sit by and watch them die and the one that was half out would have died by the time the vet arrived.
I appreciate you're straight talking, thankyou, but after 3.5 months I'm pretty fed up ( not to mention the previous 2 years!) and am sooooo bored even with a 2 year old for company!! This past few days have really pushed me over the edge suppose I'd pinned too much hope on the anti tnf
I will, as you say, say no in future but I just wish there were some things I could do!

lizzieuk1

Should have added I would love to do nothing but with a toddler I just can't!

dreamdaisy

Oh dear, what a struggle you are facing and I wish I could empathise but it's difficult. You have RA and, despite the pain and big-gun meds you are still acting as though you don't. Is it any wonder that you are feeling so rough? This disease demands compromise from us because, if we don't, it compromises us. I learned a long time ago that my being compromised was a waste of my time.

A month is no time at all for an anti TNF to 'kick in' and repeated steroids are not a long-term answer. I doubt very much you will be allowed to have another so soon after the last (especially if you confess to the reason behind needing it) but I hope that you will be able to take things a little easier (despite the toddler) so that you at least give your poor body a chance to recover from the latest bout of over-activity. Anti TNFs may give you back your life but it will be a different life to the pre-arthritis one and they require us to be as sensible as possible to help them work to the best of their ability. Arthritis changes everything and it proves to us that we cannot (and will not) have it all. DD

lizzieuk1

To be fair dd im not needing the steroid due to this weekends activity I have been struggling a v long while now, I've avoided another steroid with the hope the enbrel would work quickly, as it can for some, but am now having to think of my ability to care for my toddler, I certainly don't intend to start doing everything I could before my son was born, in fact in over 2 years I have only ridden my horse 5 times due to this ongoing flare, and trust me if there was anything I would choose to do with the risk of upsetting my body it would be to ride but I know I can't its very upsetting as I have ridden since I was 3!
I'm not in denial, I'm just v v peeed off, I've had ra 9 years and managed to work and ride as well as start a family over that time all with compromise compared to my previous ra days so I don't expect to be able to do what I did 10 years ago - trust me it was about 10x what I've done since having ra I have compromised alot! I do however expect to be able to do something other than vegetate on the sofa, this is not living its existing, and frankly after 2.5 years struggling on I'm pretty fed up of it.
Please don't take offence I am very grateful for the support here but it sounds like you think I'm doing things knowing it will upset my ra, I'm certainly not and barely do anything most days, as a family we're struggling with all this and I need to get at least a bit better for us to cope.

Numptydumpty

Hi Lizzie, no matter what is causing this flare, you need something to help. I truly hope you get it soon.
We all know how difficult and frustrating it is to make these compromises, but we have no choice in the end. It's never easy.
As for the steroid injection, if it's too soon for another, do you/can you take steroid tablets. I know they're not the best answer, but, if they could see you through, at least until the Enbrel kicks in, it might be worth taking/increasing them.
(((())))
Numpty

lizzieuk1

Thanks numpty, have called the helpline and explained my plight, awaiting a call back for consultants advice. Have never had steroid tablets but it may be as possibility, honestly I will try pretty much anything at other moment for a bit of relief!

DebbieT

I definitely meant 'slow release' tramadol sometimes it's called moderate release. It's an awful lot kinder in that form & most people can tolerate it better & it means ure only taking it twice a day. I'm on a lot of meds (other health issues) so that is a big bonus

Ul think me quite mad but I'm jealous that uve still got this sheer will to fight on & expect life to be better!! I think I've given up a bit now. I became a Nan for the 1st time 3 years ago, I turned 40 yrs old 3 wks b4 his arrival & for the 1st 6months I wasn't too bad but then my health turned for the worse & now at 43 yrs old I walk very small distances & thats only possible with a rollator or on a good day crutches!! Our 2nd Grandchild is due in November & I feel such massive guilt, we're quite young grandparents but can do SO much less than most with 20+ yrs on us My OH is disabled too you see
We are very lucky that we had our children young tho, I had all 4 by 24 so they were in their teens wen their dad became ill.

I think I'm trying to say enjoy it while you can huni. Uve started the big guns med wise, I'm not there yet, & with time that'll hopefully give you some consistency!! As long as you respect the ra & ure limitations then I think the daily drudge will be less & ul gain some of ure lost life back. It seems that patience is the name of the game.

All the best.x

maria09

Hi
Just read your post
I'm on Tramadol SR 100mgs plus paracetamol, etoricoxib(NSAID), sulphasalazine, amitriptyline at min I have had to stop methotrexate due to surgery for my wound to heal then after 4 weeks will restart methotrexate in the meantime my Rheumy has offered me IM Depomedrone next week which I'm counting down the days as the pain,stiffness, inflammation is playing up
Strangely enough my operation site has no pain just slight irritation as my wound heals
My theory is if your body is struggling then the steroids will help even if you require them regularly I thought you could have them four times a year but could be wrong
I'd say go for it if it works for you
Maria

lizzieuk1

Thanks maria,
Hope you get back on mtx soon and don't have to suffer too long.

Have asked about a steroid, I have had 2 already this year and if I have another it will total 10 in 2.5 years so rather a lot, not quite sure which way to go with it as I am worried about side effects, my business has all but gone down the pan as I just cannot work in my current state but never mind I've built it once so guess I can again when I am more controlled.
Will wait for call from consultant and see what they suggest, suppose I have to accept I may be laid up for a few more months yet

maria09

Hi Lizzie
I really feel for you
It must be so difficult to see your work dwindling out
I was lucky I worked for NHS so was able to retire through ill health
I hope you see some improvement soon
Maria

Claire38

I completely understand your hesitation about the IM steroid (depomedrone) injections. At the moment I'm having to have one about every two months, as the pain is so bad. I've been doing this for a about a year, since coming off the mtx. I'm hoping the the sulfasalazine will kick in at some point (I'm only on week 5), and that I can reduce the amount of IM steroid injections I need.

I did speak to my rheumy about my concerns about having so many steroid injections, and she wasn't overly concerned at the moment. She said the IM injections were less harmful than taking high dose oral pred to regularly.

I hope you get some relief from the pain, either with or without the steroid injection.

Boomer13

Hi Lizzie;

I really empathize with your situation. I live in a farming area too and I find it very difficult to say "no" to things. I have to say I'm kind of reclusive now because I always find myself getting pulled into activities that are too much for me.

I use a set of wrist braces to protect myself if I have to do something with my hands around the farm. Not perfect but they do help. Unfortunately, I just have to avoid most things where I need to use my hands. Difficult when you have a horse and animals to take care of! My husband ends up doing it all. Mostly he's ok and understands but it has really stressed us over the last few years, though he's really good with horses now!

I really wanted to give my horse away. As difficult as that would have been, I just couldn't manage taking care of him. My husband insisted that we keep him and live rurally. I'm grateful, but there's always something going wrong around here in typical farm fashion. I've had to get used to not taking charge and just muscling through jobs no matter what the consequences. It is definitely not easy but I have to prioritize what I do and just say no to the rest.

I haven't found any drug that allows me to function well, so I really listen to my body now and try not to do anything that makes it "scream" at me. Here's hoping you find something that works for you.

I have had good luck with time-release tramadol. It's really a wonder drug for me but not perfect; I still have lots of pain most of the time. I've heard that it doesn't work for a lot of people. I can't do without it. I guess I'm lucky that it works somewhat :? Good luck. I hope your pain eases off soon.

Anna

lizzieuk1

Thanks guys,
Am hoping the rheumy will sort something out for my pain relief, just waiting on blood results so they can decide what's best!
Feel a little better today, seems that a Tues/wed are slightly better so think maybe the enbrel is working but takes as couple of days to reduce my inflammation then I get 2 slightly better days then get worse again, better than nothing though so am hopeful it will improve over the next few weeks.
On the plus we go away in 2 weeks for holiday think we're all well ready for that!