Hiya all hope you are doing ok, so after my HUGE flare I had a 120mg of steroid injection and I will be honest it’s hardly done anything. When having my ultra sound it showed serve inflammation in wrists and hands (as I knew) and also extensive thickening throughout.
The swelling has been horrendous and every joint felt like it was falling apart, however even though the swelling has gone down slightly in my hands they are still mega stiff, hot and tender to touch!
The Rheumy put my meds up to 3000mg daily, I still feel it’s not enough.... does anyone have any advice ? Plus has a steroid not worked for anyone else?
I was hoping to feel so much better I am so disappointed over a week on and feeling rubbish still Xxx
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EmmaDR
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Really sorry you are still in pain. When did you have shot? To be honest, intramuscular steroid shots only helped marginally for me too. I don't think they work well for everyone.
Like you,vthe steroid took some of the inflammation down, but I was still in agony. When I had the shots they usually took over a week to kick in and make some difference.
I had it just over a week ago, I had only ever had steroid into the joint before this was the first intramuscular steroid I have had xx plus I have never had hands and wrists like I had this time xx I thought that it was going to smash the inflammation and I would feel great xxx I just feel down about it thank you ❤️❤️
Tough call isn't it. How do you get on with the carbamazapine? I hated it. Turned me into a dribbling, shaking wreck! Lamotragine I got a rash. I'm not epileptic. Was taking them for another disorder. I do rather badly on all antiepileptic drugs. Shame really, as some work well for nerve pain.
I never really felt any benefit from steroid injections either. So my rheumy gave up giving them to me when each set of new meds didn’t work. I just have to bide my time until the right combo is finally found. Still don’t think we are there.
I have problems with the drug side too as I am also epileptic and I take lamotrigine and Carbamazepine, Carbamazepine is a drug which you can hardly put any other drug with it, it’s a bloody nightmare. I wonder whether that’s the issue, I also have been diagnosed with Fibromyalgia as well but as soon as something doesn’t work as well as they think it should RA wise they instantly go to that, “oh it’s your Fibromyalgia “ instead of persisting trying to sort my RA. I don’t even think I have Fibromyalgia anyway xx
I am on Pregabalin, 250mg, 3 times daily for my FM and have found it works very well, I am not pain free but it has made it manageable and Naproxen for my inflammatory issues along with Paracetamol and Codeine for general pain. I also have a bi-annual epidural for my disk. When this first started with me the specialists were diagnosing symptoms without invetsigating the cause, I did that research and they accepted my findings and conclusions about Enthesitis which has helped in the prescribing for all the various symptoms, it can't be cured and is degenerative, but I am still well under the maximum painkillers limits giving me the option to increase them in the future when it gets worse. In the end you will probably have to follow my path and work with different medication regimes until you find one that works for you, it took a few years for me which was not helped by the delayed diagnosis of the cause.
Yes it happened to me with an horrendous flare last October. I have now refused any form of steroid. Am now on biologic drug and MTX and seems to be under a bit of control but early days.
I struggle with the weight gain any way like I said from carbamazepine when I went on that my weight increased by two stone in two months and I was 16 then and did loads of sport I was a size 6-8 and now I am a size 12 to 14 and I cant add anything else ie oral steroids it will be a nightmare. xx
I used to think that when I had a steroid injection that it was wonderful as it helped me so much. However, I had one last May by guided ultrasound which didn't help in the least. Then I had another one (not by ultrasound) in late September which it was really good and kept me going to several months. However, I had an intramuscular one in January which didn't do any good, so I was given a steroid injection into my knee nearly two weeks ago and that hasn't helped either so I am very downhearted about it.
At present I could almost scream with the pain every time I try to move. It is the worst in my lower back and just doing anything at all is a nightmare. I had two falls recently and have pulled tendons in my shoulders and arms and have a rotator cuff injury which is very painful and I can't lift my arm up properly. I was given exercises to do at the physio dept on Friday and since then my pain in my arms and back has got even worse. I sometimes wonder how to go on in such pain.
Its a nightmare isn't it, I so far have had 6 operations to try and sort my wrists but it just seems a never ending issue. However since my rheumy diagnosed me with fibro all he puts everything down to pain wise is that! it drives me mad. I took in a load of images of my swellings and he couldn't ignore me this time and by the size of my hands.
I went for my ultra sound and the damage inside my wrists and hand/fingers are terrible I am only 35, which has made me really cross because if they would listen to me more the damage might not be as bad inside and this flare might not have happened or at least could have been sorted before now.
I get annoyed that they are easy to cop out and put it down to something they don't have to solve
I really feel for you the pain is horrendous isn't it I am so far not impressed with this intramuscular Steroid xx
You poor thing with epilepsy as well. I had a steroid injection 2 weeks ago and the next 4 days I was in more pain than I had been before it. I'm feeling much better now 2 weeks on but I think I may be going into remission . What helps me is eating Lots of fruit,veg,fish and free range chicken and a wonderful herbal iron tonic calked FLORADIX. Whenever i feel exhausted or am anaemic i buy it from Boots. Its about £10. I hope you start to feel better soon.
was that a intramuscular or into the joint? as the ones in the joint always hurts because its putting fluid into a joint that is already full of fluid / inflammation . However once those few days are up when I had it I felt like a new person xx
I’ve had intramuscular steroids injections quite a few times now and they have never really done much with regards to reducing my joint pains, stiffness etc. I even went as far as telling my Rheumatology nurse that it was rubbish and I was only taking the one she was offering me as I was desperate and would try anything to stop the pain. Well guess what? It worked. I’ve had 4 weeks of being able to get down the staircase like normal folks and last week I stood up from bed and I didn’t yelp in pain as my feet touched the floor. But it’s a quick fix and already wearing out. I’m actually counting down the days, so I can have another injection.
I’m afraid this is my only choice of treatment until I get treated for latent TB, so I can start biologics. Sometimes we are in so much pain and wrapped up in our condition that we don’t recognise the small improvements that we are getting from treatments. I for one am guilty of this.
Thank you Nicole, its weird because it feels that my pain is worse now the swelling has actually gone down a bit which seems bizarre. its almost like the swelling was protecting it.
But I will be honest I really don't see the benefit from this latest steroid, and my hands are still as stiff.
Steroid injection don’t work the same for everyone.
They usually hurt more at first from the actual injection, then settle down within 7 days.
I had an injection in my shoulder and it worked fabulous.
Then next one it did nothing, seemed to aggravate it more.
Tablets will work systemic wide and give you relief, however if you take them long term your weight will creep up.
Can you try the tablets high dose to cancel your pain then taper to lowest dose possible to keep yourself pain free? Tell your doctor your concerns and hopefully they can help you find a plan that works for you.
Yep when I had it in my knee it felt terrible and then I felt like a new person however we are now well over a week and the intramuscular one hasn't worked at all apart from reducing the swelling in my hands a tiny bit. I wish I had a permanent ultrasound and sonographer with me to check my insides LOL x
So sorry that you are feeling so low. It's so difficult. I too have terrible wrists. So much so the consultant hand surgeon told me that he doesn't feel that I would be a suitable candidate for replacement wrists despite the fact that two years previous he told me I was. He has since referred me to a couple of his colleagues to see if they can think of anything. I'd go elsewhere, but he's one of the best hand surgeons in the country. So feel that others won't go against him. However, I had horrendous swelling and pain. Several other joints in my body also. As everyone else has said. The steroid takes a while to kick in. If you are able to, I find that nortriptyline helps with the fibromyalgia when trying to go to sleep. However, not sure if this would clash with your anti seizure medication. Worth asking though. I've had 45 years of living with RA. I'm 48 now. The only people that truly understand are my family. I've adopted the attitude that I no longer explain to people about how I feel as I no longer care. I am comfortable recognising my limitations and am happy to say no to things if I have to. Enjoy the days when pain is less, and look after yourself and accept the days you're low and in pain and stuff what people say and think. It's your body and your battle. Sending positive thoughts to you. Hope the steroid eventually kicks in. ☺
I think I find this part of me the worst the hands and wrists for pain, because you do everything with your hands and wrists . I only got diagnosed by accident in 2015 because my surgeon after my wrist op failed on both wrist after having reconstructive surgery so I was sent to Rheumy about hypermobility syndrome, they looked at me through scans and I was full of inflammation it really surprised the professor with what he saw, however I think i had it since a kid I have continuously had joint problems and pain in my joints, I have osgood slatters really badly on my knee which is caused my inflammation and was always told its just "growing pains".
I get fed up of not being listened to and them putting problems down to a condition I don't even think I have. It seems like they have just given me a diagnosis of Fibro because its an easy cop out then to have to take me seriously x
Just to explain I cant be treated for fibro at all because of my epilepsy tablets, there is no meds that can go with my other tablets! So its an easy cop out because they don't have to do anything or even treat me, Its not like I even kick up very much either, so I am not a pain in the arse patient who is demanding. However this time from the swelling he had no choice he could see it from the outside.
Bless you. I know. That's exactly what I had said to the consultants. We need to use our hands every day which then increases pain etc. It's hard, but if you can, you need to tell your consultant exactly how you feel and also what you would like as a patient. It's difficult I know. I feel like I'm going into battle every time I visit the hospital. I think that they become complacent because they see so many of us. We just get put into the conveyer belt and herded through. But it is your right to be listened to. It's difficult to get your point across sometimes. Write things down so you make best use of your time in your appointment. Make clear what you want and what your expectations are. Don't be coaxed into taking meds without asking questions such as success rates and side effects. We all a routing for you. Stay strong.
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