my next rheum appointment is 9th August so I'm keeping my posts to only when I have something useful to offer! I had physio Thursday and we discussed steroid pills versus injections. To recap I had requested injection into my shoulder (although all my arms joints hurt, the right was agony) but GP said to stick to pills.. I ended up being sent by GP to A & E as the pain became unbearable and the doctor there said an injection might have been a better idea too. However when I told this tale to the physio (I've been told to lay off all exercises because of the fluid and inflammation) she said that latest research shows that steroid injections can be really damaging to soft tissue especially muscle, even just one or two. So, in retrospect I'm glad I didn't have it.
My main concern had been that I take Topiramate for my head and GP warned me it may reduce the effect of steroids. What it's really done is just taken longer to take effect. Even now that I've tapered to 10mg of the Pred, it is giving me relief but it just took longer to get there than when I took the previous course before I started on Topiramate - but it was worth persevering.
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Brychni
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I hope your appointment on the 9th goes well and you get some answers.
I guess with most drugs concerned with inflammatory arthritis it's a balancing act , inflammation itself isn't good for the joints but steroid injections can come with risks too.I know from reading here that steroid injections directly into joints have been and absolute relief that people would say is worth the risk.
Everyone is different, I don't like the idea of taking steroids but I know at my worst I would. Glad we have a choice x
Well apparently it does permanent damage to the actual bones too. I was surprised to hear that they don't really recommend them for anyone and that taking them orally, contrary to what I've been told, is much safer. At 10mg I'm still feeling the benefits but can also feel it beginning to wear off. can't remember if I posted about the rheum nurse calling me back - I hadn't been sure if I was able to access the nurse service as I'm in the re referral process - but she said the timing was perfect for my appointment as I'll be free of drugs by then. It was what I had planned but I hadn't planned on the delay in my appointment which was supposed to have been 9th July so I've had to rough it without meds for quite a while longer than expected.I now feel a million times worse than I did while on DMARDS. Those 'new' symptoms that I interpreted as the drugs not working were just par for the course and I am disappointed that the consultant just went along with it. If I had stayed on the medication they would probably have passed.
Well, we'll see what happens.
Have you had any more contact with your consultant/nurse?
It's a really rough journey sometimes isn't it, sorry your previous consultant didn't give you better advice. Also changing your appointment is like having the rug pulled out from under you isn't it, dont k ow about you but I have such hopes for appointments so if delayed it can be so hard to keep patient.
I've written and sent a letter to my consultant yesterday, so I will wait now; Think alot are on holiday so I'm not expecting anything quickly .
I'm on benepaliFor me it's taken the pain down from what was say a 9 to about a 6.
For instance I can change a duvet cover now which I couldn't do before but there still is alot I cant do due to stiffness / pain or it will trigger a bad flare up.
I find its hard knowing whats the disease and what I am to expected to feel like, I mean is a 6 the best ? I hope not and from what people have said here its not.
I know I'm always going to have something hurt but not flaring all the time.
I know what you mean. What is the new normal? When I was first in the system the nurse told me that everything could be put down to inflammatory arthritis, and the GP told me not to put everything down to inflammatory arthritis. The nurse told me that despite medication, there would be some progression of symptoms and then they told me that the new symptoms were down to other things in addition to the inflammatory arthritis!
That’s interesting to read in your post about steroid injections causing damage to soft tissue, I always wondered about that. You say it is latest research . Thanks for sharing that info .Wishing you better soon. 😊
The physio made it sound as though it was a fairly new thing. I had a google just now and there were articles from 2019, so not that long ago. I think was the reason the GP had been so reluctant, I just wish he had explained why.
Steroid injections are well known to cause damage to tendons, which is the main reason most limit injections to a max of 3 in a joint, well spaced apart. I’ve nursed patients with ruptured Achilles after having injections which weakened the tendon.
Saying that I’ve had 2 in my shoulder with excellent relief lasted a year each time. I’ve also had 2 to my right knee with good results. I’m already on oral steroids for life as I have adrenal insufficiency
It would help if professionals all had the same opinion. I've had both shoulders injected last week as I cannot tolerate steroid tablets. So glad I did as it's made a massive difference pain and mobility wise. First time they've needed injecting in 6 years
Got same problems, taking pills. occasionally are given injections. My problem with this is that sometimes they have no effect at all, other times it's like a dream come true for several months.
Sometimes you have to make a judgement on what’s important once you know the risks at stake. 3 years ago I was in a wheelchair for a while when RA struck me for the first time …and it was a huge flare in virtually every joint including my jaw. I struggled to move. I was terrified and knew nothing about RA, no history of it in my family.
Whilst trying various treatments over the next 12-18 months I was glad to have steroid injections in my shoulders, knees and ankles to provide some relief and return my mobility. As of 9 months ago my consultant hit on a winning formula of drugs that has given me back my life. I am so lucky that I have full mobility back and although I get tired more easily and have to take stairs/steps slowly, no one would ever see me and guess that I have RA. I know it could all change again in a heartbeat but steroid injections were a huge step in my recovery. There are different paths for everyone, good luck with yours 🤞
Hi Brychni. I have just had a DEXA scan which shows steroid induced Ostopenia (damage to bones but not as severe as osteoporosis), for which I am now on a five year treatment plan to try and repair the damage. I have just has 120ml steroid injection which has taken my ESR/CRP down to almost nothing, however I am still in pain and had an injection in both knees about 6 weeks before that. From all the injection sites I get a skin reaction and intense itching, but the only time I had tablets they didn't seem to do anything, although it was a 7 day course of a very low dose. As you say its a balancing act. Good luck for the 9th!
Thanks - I am almost looking forward to the appointment as if it were a wedding or something! My husband accidentally booked the car in for a repair on the 9th and I totally lost it with him and told him to rearrange it! I've waited for so bloody long, and been in so much pain, it's like there's nothing else. 🙄
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