I have been on Benepali for 17 weeks now. I was advised by my consultant to taper off the steroids. I was on 20mg per day anyway the last three weeks I have had no steroids at all, but omg the pain I have pain where I've never had it before knees, elbows, ankles, shoulders. Has the steroids been masking the severity of my RA. My hands and wrists were really all that bothered me. I had an appointment with the rheumatologist nurse on 11th June the Benepali is working as my inflammation markers were 24 down to 10 so all is good on that level. The nurse said to go back taking steroids for a couple of weeks to see if the pain settles. What is the point of tapering it's like a viscous circle. I know we are not allowed to discuss taking medication but can I just take steroids for 2 weeks then stop again without the tapering process. I had an xray on my knees on the 18th June to see if it is RA as my knees look out of joint. Any thoughts regarding the steroids would be appreciated. I find most people on here more qualified to give advice than my own GP
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Kazwilks
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Coming off higher doses of steroids gives me painful muscles and pain in joints where I don't usually have it. Unless I have only been on a higher dose for a short time, I taper down slowly. It's often difficult to tell the difference between the side effects of reducing the dose and a recurrence of the original symptoms, but I find that the muscle and joint pains of withdrawal from higher doses of steroids gradually subsides, whereas the original ones just get worse.
I'm not sure that helps you much though! The main thing I find is not to taper too quickly, but that's just for my experience and you do need to take professional advice taking into account what is happening with your general state and your blood tests.
Thx for the reply old timer I am very frustrated with this situation. I have been on steroids for 4yrs without a break this was all down to NHS staff shortages and not been able to have any RA treatment. Thought it was a good thing to be off them but dont think suffering in pain is worth it take car and thx
What was the time span that you were reducing? Pred needs to be reduced very very slowly and can take a long time. I don’t think you can just stop taking pred however long you have been taking it but the length of time does affect how you taper. I think you need to talk to your rheumy nurse and get clarification from someone qualified to answer but you made need to go backwards a bit before going forwards again, that’s what happened to me. Don’t despair though, benepali allowed me to get off pred after 25+ years on it 😊
Thx for your reply Kitty. I've been on pred for 4 years. Started tapering straight after my first Benepali injection which I was advised to do. Week 1 down to 15mg week 2 10mg and so on he even gave me a prescription for 2.5mg, so for 3 weeks I was on 2.5mg then the last 3 weeks none at all. Coping with cocodamol at the moment but it seems taking the steroids has definitely masked the damage to my joints. Take care and thx
That’s quite big drops in pred and a short time to do it, I wasn’t advised that and the last 5 mg I dropped 1/2mg a month. I suppose all rheumy shave different ways of doing things. I hope you feel a bit better soon.
Hi Kazwilks, My Rheumy wanted me to taper off Prednizone from 7mg per day and reduce by 0.5mg every two weeks and down to zero. Think this was 4 months ago. At present I am hovering between 2mg and 1.5 mg. Each step seems to take a while because when I drop symptoms come back. I am taking it very slowly and heading slowly in right direction. It is cold at present for Sydney which is making drop down process slower. In hot weather my symptoms almost disappear making drop down easy. I would not stop completely unless told by Rheumatologist to do so.
I have no idea if this is correct, but was reading somewhere that prednizone tends to partially do certain things in our body and when coming off it the body needs to somehow take over where the steroids have been working. Hence the tapering off process.
I found Oldtimer's experiences very informative. She is such a wise owl.
We are all different and in different circumstances. I would not do anything unless told to by Rheumatologists - it is all so complicated .
Thx for your reply. Yes that was the plan by the rheumatologist to stop taking steroids altogether. I had a bone density scan done in December 2018 the scan showed my bones very thin for my age. I know it is complicated but right now I'm in a lot of pain so I will probably go back on the steroids just to get some ease. Take care and thx
Hi - I was tapering down from 20mg of Pred. Stopped taking some 8 days or so. As soon as I stop, the inflammation and pain creeps back. It seems as you say Pred masks, I am convinced. My Rheumy uses it as a temporary stop gap. Been on/off Pred for a month at a time. 3 times since 2017-2019.
I guess I am unclear if the damage is the uncontrolled inflammation - or the Pred destroying the joints ligaments. I seem to be going backwards in terms of inflammation, pain and joint destruction with Pred/Biologics since diagnosis Nov.16.
Thx for your reply Hessie. I will ring my GP on Monday and ask her advice. I cant cope with the pain in my knees I can barely get out of bed in the mornings. Like I said I've never had pain in my knees until I stopped taking the steroids. Take care and thx
Thx for your reply. I am just not sure if I could only take the steroids for 2 weeks and then just stop. I will ring my GP on Monday and ask her advice. Take care and thx
Interesting reading everyones experiences. This is my 4th day on 1mg of prednizone - down from 7mg over 4 months. So far so good. Been on prednizone from the start 18 months ago. I have noticed that even if there are a few pains, these sometimes go away by themselves without 'upping' dose. I wonder if this is my bodies natural healing self taking over? I had painful wrists which everybody said was carpal tunnel but pains have gone. Now I am working through Plantar fascia which seems to be receeding with time and specific remedial exercises. I am so happy that I am heading in right direction - wish it was the same for all of you.
So happy to hear you are heading in the right direction with your pain management virtually under control. It helps making life easier without the constant burning throb and unwanted hurt in all of your joints. Hopefully when the benepali kicks in fully I might have a bit respite and get back to feeling a bit more normal. Take and thx
I know how are you feeling, I had the same problem like you till I didn’t started to use SRAM. It is based on steroids and helps me with my muscular illness and with weight losing. I was at a lot of doctors asking them to help me with my problem, and two of them told me about SRAM ( here I found first information about it trickortreatment.com/best-s... ), I was wondering what is that, and it is a food supplement that helps you with muscular problems. After 4 weeks of use, I can surely say that I am feeling better and my body is feeling different from the point it was at the beginning. I don’t insist to suggest it to you, it is up to you, I can surely say that you are gonna feel the difference after using it. I didn’t told you all the benefits and non benefits. Better look on internet to make a decision. Good luck and wish you the best.
Thanks Dspooky been on Prednisolone for 18 months. Got to 0 mg for one day then pains come back so back to 1,5 mg. Nurse said it can take a year or even longer sometimes to get down to 0, Thanks for information, Forgot to check the notifications button hence slow reply
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