opinions advice help
Posted , 9 users are following.
I recently attended my appointment and met a new rheumatologist my usual one had retired. Mentioned I was still very fatigued and he suggested a Steriod injection, said I would start to notice an improvement after 3 to 4 days lasting for maybe a month. His words were I would be running around. However, so far noticed no difference. Has anyone had this injection, opinions would be appreciated. My previous consultant always said it's part of the illness.
Am I expecting too much too soon.
0 likes, 23 replies
guinivere yvonne_79570
Posted
I've had a few Steriod injections,but I've never noticed a difference in my fatigue etc. I was told the same that I'd be up and running,so was disappointed with them.
yvonne_79570 guinivere
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EileenH yvonne_79570
Posted
I think if anyone was expecting too much it was your rheumy! Corticosteroids DO NOT CURE FATIGUE!!!! If only they did.
High dose steroids MAY be associated with a sort of Duracell Energiser Bunny effect and some patients develop a sort of mild mania. They can't sit still and get a lot of housework/gardening/whatever done. Only trouble is - they usually hit the brick wall of fatigue due to the illness after a few days and end up wiped out.
I'm on permanent steroids. If I have a flare of my autoimmune illness I have to go back to a higher dose from my usual lowish level. My GP also says I'll feel the boost - do I heck! I have also had a few steroid injections, one for a knee injury, a few times for hip bursitis - I have NEVER felt sufficiently better to be "running around". The pain it is for is improved, I feel better from that. But energy? In my dreams. I do feel more like doing things when I'm not in as much pain so there is that "energising" effect I suppose.
Your previous rheumy obviously knew more about autoimmune illness - I can't think of one that isn't accompanied by fatigue and the only way to manage it is by pacing. Anyone who found a remedy would make a fortune!
By the way - I take it you aren't anaemic or very low in vit D? Those are also common contributors to fatigue in autoimmune disorders that can be easily sorted out.
sukes yvonne_79570
Posted
Eileen made a good point when she said By the way - I take it you aren't anaemic or very low in vit D? Those are also common contributors to fatigue in autoimmune disorders that can be easily sorted out.
Also a problem with your Thyroid can also cause fatigue. I've had quite a few steroid injections - back, hips shoulders, knees, feet and hand and have to say they certainly do not help with the fatigue and quite honestly although some of them did give me a slight respite for a few days with the pain, nothing lasted I'm afraid. What a pity your other Rheumy has retired.
pami82 yvonne_79570
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sukes pami82
Posted
That's really good to hear Pami, as you sayu not everyone is the same, but it does give some home.
sukes pami82
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linda23834 yvonne_79570
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Hi Yvonne, I am on Benepali injections weekly. I was at the Hospital 2weeks ago. My Rheumatologist told me that the fatigue is part of R.A. He suggested a steroid injection to help with the joints. It did take a few days and then I noticed I could walk a little easier. It does help, but I can't walk very fast. I hope it will help you. Probably unfair for yours to suggest you will be running around, as it can be very disappointing if the improvement dosnt happen. Everyone is different and reacts differently to drugs. I hope you get some improvement.
ian62902 yvonne_79570
Posted
Hello Yvonne.
Read your post about fatigue and know just how you feel. I often experience severe fatigue, but always put it down as a symptom of RA. I'd ask your rheumy if he could inform your GP for bloods on vit D and iron levels. I now take vitD and noticed slight difference which does help and when i see my rheumy in fortnight time I'll ask if possible for repeat of iron tablets. Failing that I'll go docs for them seeing as i had original prescription off rheumy. As they say "every little helps". And they won't do you any harm, you might find it gives you that little nudge in helping you get going. Anyway, all the best and good luck for future. Ian.
carol303055 yvonne_79570
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Hi Yvonne, I've had IM steroid injections (Depomedrone) with very limited effect. Certainly no effect on fatigue. On the other hand I've had oral steroids and the ones into the joints with very good effect. We are all different I know, but I wouldn't choose to have another IM injection (I have had 2) Good luck. Hope they work for you. Carol
yvonne_79570
Posted
Thanks everyone for replying. Helen, I am always being sent for blood test -about every two weeks - sometimes I have a blood test and within the week I get a letter to go for another, this I discovered is because my white blood cells are so low. However the latest explanation is my ethnicity but nothing have been given to counter, I don't know if I have a vitamin deficiency. I have had test for my thyroid the doctor said it was borderline but no medication given. Told to wait and see and it will be checked again.
carol303055 yvonne_79570
Posted
Hi again, you probably know this but your white blood cells may be low due to other meds you're taking which are knocking your immune system??? I had to stop my methotrexate and Humira when my neutrophils dropped. A low haemoglobin is related to anaemia but it is complicated and our ethnicity complicates it further.
jan01779 yvonne_79570
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I have had several steroid injections over the course of my RA and whilst it gave joint relieve when waers off still grumble. I too dont think it makes me any less tired.
patyrod yvonne_79570
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I will be getting my first steroid injection into a knee soon. I hope that it will give me energy. I took prednisone orally for a couple of months and that really had me buzzing around. But, after starting methotrexate, I noticed a lack of motivation to do anything. It is not really a fatigue, though, just a blahness when it comes to housework or paperwork.
So, crooked fingers crossed that the injection helps! Sorry that yours didn't.
yvonne_79570
Posted
Hi Carol303055
The consultant said I don't need to come off the meds as he does not think the two are connected but he will keep an eye. In the past whenever I mention fatigue I was always referred back to my doctor. Thanks again
carol303055 yvonne_79570
Posted
It's difficult isn't it? Pain is draining especially when you struggle to do 'normal' everyday things like using the stairs and getting dressed. I feel absolutely weary when I'm in pain. So when my pain is relieved, say when I have oral steroids, I can feel great and yes, my energy levels increase. The mind and physical symptoms so intrinsically linked. It has taken me time to 'get my head round' my diagnosis and what it means and I've found that can be no less debilitating. Carol
linda23834 carol303055
Posted
Hi Carol, I completely agree with you. Pain does drag you down physically and mentally. In 2 years, I went from a fun Gran, who would join in with everything I could with my Grandchildren. Doing 2 1/2 hour walks a day around where I live to walking with a walking stick and never ending pain. The more I did, the worse it became. It took me a long time to get my head around it. I realised by pacing myself and the kids realising I couldn't go on a trampoline and run on the beach. But, we now do sit down games and crafts, I realised it was my time they loved. Have to say I'm drained when they go home, but love every minute of it.
I was told if you don't use it, you lose it, which is easier said than done and to be kind to myself. Just do gentle exercise. I've realised being in this Forum does help and you know that everything you are feeling or experiencing, there are thousands of us out there feeling exactly the same.
ian62902 carol303055
Posted
hello carol
Sorry to butt in on your conversation but couldn't help noticing something in your post and other people posts about steroids. You said you sometimes feel better when you take your oral steroids and someone said they are on permanent steroids. I've had RA 20+ years and believe it or not I've never heard of either of them. I've had steroid injections. About half dozen in those years. But what are oral steroids? Would be great if you could share info with me. Many thanks. Ian.
carol303055 ian62902
Posted
Hi Ian, first please don't apologise for butting in, that's what it's all about. I've taken oral Prednisolone intermittantly for 3 or 4 years now. I've recently had my methotrexate stopped because of lung complications and also my Benepali (Etanercept) stopped due to recurrent chest infections as it lowers your immune system. This left me with nothing for my (psoriatic) arthritis so I'm currently taking oral prednisolone until I can hopefullly restart my Benepali when they're satisfied I'm infection free. The prednisolone isn't controlling my symptoms completely on their own but I'm managing. Some days (much) worse than others. Steroids are not risk free either so not a good idea long term but they do reduce inflammation and swelling and consequently pain. Again, they lower the immune system and they can 'mask' symptoms, they can affect the bones (I'm taking some bone protection at the minute) and can thin the skin amongst others. But they can be very helpful certainly in the short term. I hate to think what I would be like without them at the moment. Have a chat with your doctor. You may find them helpful when you have flare ups but there are important things to be aware of as well. Hope this helps. Carol
carol303055 linda23834
Posted
Hi Linda, I know what you mean about the grandchildren. I look after my just 2 year old every Monday and she doesn't understand when I can't pick her up or get down on the floor with her. But my husband helps and when I am ''less good'' I'll make sure the play doh, crayons etc are on the table. I was so looking forward to looking after them (I have another 2 little ones!) but I can't do what I wanted to. I'm shattered at the end of the day but I also love every minute and they lift my spirits even though I'm shattered. I agree, it's lovely to 'talk' to others who know what you're talking about. Carol
ian62902 carol303055
Posted
Hello again carol.
Thanks for taking time answer. I've been on gold injections for i dunno bout 4-5 years now. It's been pretty good for me so far, then this year struck and bang! Don't know somedays wether I'm coming or going with pain. Takes me back 20 years or so. Not good! Got go for decades scan next week and hopefully results in in 3 weeks time. I now thanks to you know roughly what I'm talking about when get results and shall ask about these oral steroids.cant see what more harm they can do to at least they might give me small respite to try and get my head round the pain. Thank you so so much and I'll report back to you when i see the men in white coats. Thanks again. Ian.x
carol303055 ian62902
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You're very welcome. Gold injections have been around a long time. There are other treatments also available. Sounds like you need reviewing and a discussion about all your options. Good luck. I look forward to hearing how you get on. Carol.
linda23834 carol303055
Posted
Gosh Carol, 2 year old, that is hard. Luckily our 5 Grandchildren range from 7-14. So no lifting thank goodness. All with different interests and needs. I bet your Grandchild cheers you up. I used to do a lot of babysitting, but the family understands that I can't do as much as I did. Enjoy the visits though, they certainly cheer me up and make me laugh. Take care. Linda.