Hello all
Does anyone know an alternative medication for Prednisolone. Been on it for 4 years. Now it is playing havoc with my life. 5 stone weight gain over 5 years, Type 2 diabetes which I can not regulate blood sugars because of steroids. I have also been on Cotriazmole anti fungal tablet for 2 years.
Thank you in advance for any help given.
Annie🌈🌈🌈
Why are you taking Prednisolone as you don't say why in your post. Four years seems to be a long time to be taking these steroids, as youve found there are many side effects to long term usage. They certainly help with inflammation in the short term or when one has a flare up with the many forms of arthritis and fibromyalgia.
Hello RoadRunner 44
Thank you for your reply. I have Pulmonary Fibrosis and Hypersensitivity Pneumonitis.
Right, i believe its a progressive lung disease linked to a form of arthritis you have. Perfenidone is a medication used to treat or rather manage PFH. Perhaps you are already on it. I dont know anything about Hypersensitivity pneumonitis I'm afraid. I wish I could be more help as it sounds like you have a lot to deal with. Best wishes and hopefully we will all have a better year in 2021.
Hello
I do not have arthritis or have ever been diagnosed with it.
Sadly, I have to agree with Judge69 that the steroid prednisolone can help and be a blessing with pain and inflammation but it has many drawbacks too. A friend of mine is having great difficulty trying to come off them after being treated for fibromyalgia over a year ago. However, if you are under the care of a consultant perhaps a telephone call to the secretary would be useful. By explaining your current concerns and difficulties he or she could possibly refer you to a pain management centre. I'm so sorry I couldn't be more help to you.
Thank you. Annie🌈🌈🌈
iowasds - No easy answer that I’m aware of. I lost a daughter at age 42, that suffered from a myriad of anti-immune diseases and took prednisone to alleviate pain. Every specialist and world class research center tried without lasting effect to wean her down to even 10-15mg/day. I personally am a lung cancer survivor with stage III COPD and on oxygen 24/7, and I always have prednisone ready to take at the start of any exacerbation. I am very careful however, and on average only have to do so one timeframe every one or two years. I apologize for this being bad news, but prednisone/prednisolone is are called ‘devils tic-tacs’ for a reason - they absolutely can help you when seemingly nothing else can , but they also can slowly kill you if you are unable to wean yourself off or at least significantly cut back. I am not a Doctor or medical professional of any kind, but I I have personally, and with my daughter, been to numerous specialists and clinics, including Mayo, Cleveland Clinic and Johns Hopkins, and though a layman myself I stand behind my comments, judg69
Thank you for your response. So sorry that you have gone through one traumatic loss of your daughter, now experienceing your own health issues.
I am from the UK and have never had an auto immune disease although that is why my husband and I feel that I have 2 lung diseases the Doctors tell me not. They gave no explanation why I have these. I have never smoked, I do know that even if you do it is not the reason why you may have disease. It started 4 years ago. Then 2' years ago intensive care, medical coma, re suss x2 complete 💓 failure. Managed to pull through when they turned off ventilator started to breath miracle I know. Then in May this year had heart tack.
We have spoken to Doctors to find out why as everything seams to point to Autoimmune Disease they say not. At the end of my thether just keep taking meds but I'm aware the danger they are doing to me.
Stay strong to all of us 🌈🌈🌈
Have you ever taken metratrexate , iv never smoked or had a chest infection before but got lung disease from the medication, terrible
Thank you for responding.
I do not have the lung disease because of taking the meds. Doc's do not know how I got the lung diseases just have them . I want to talk to my consultant about changing the Prednisolone as I never had diabetes but now have type 2 because of the steroids. Now more health problems are arrising because of the long term steriod use
This must be really hard for you when you do not get the answers you need. I think you need a long conversation with your specialist as to why you are on the steroids. You want to come off them and I totally understand as you state what they are doing to you. You need to have a list of all the problems with you when you speak to dr and if you are not happy with the answers or you dont understand, you must challenge. I have IPF which came out of nowhere but I was put on Nintedanib for it not steroids. As far as I know there are no alternatives for steroids, but what you need to know is that the only drug for your conditions. Please let us know how you get on.
Have a look at this scientific article which I came across a few days ago. I'm still wading through the scientific terminology but it's looking like a good alternative to me. respiratory-research.biomed...
I have been on prednisolone continuously for 42 years. I am still thin. 6 feet tall and weighing 11 stone. Years ago I was on large doses, but for many years I have been on a maintenance dose of just 5 mg. We all react differently. Are you eating the right foods and no alcohol?
Annie, I hear your frustration. That article from Marisboy is interesting. I know it is featuring COPD ,which is not your problem, but it does seem that investigation is going on to replace steroids. You have a lot of difficult issues which possibly make it hard to really feel heard by your doctors.
I have found it helpful to prepare my thoughts well in advance and have had best results by sending these by email via the consultant’s secretary.
Perhaps explaining all the changes you are finding and how they influence your quality of life is one part. Then another asking the questions that you have about the steroids and any other ones you have in another part. Then opening the door to an appointment to look at those issues.
I am always very appreciative of the work our professionals put in ,but I think sometimes our consultants are not always aware of our problems in dealing with the treatments prescribed for us. They can respond well when we reach out.
This is just a suggestion and I wish you well in your healing journey.
Grace
So true Walkwalk, I shall follow your suggestion when I next speak with the Dr.
I have an autoimmune disease and have been on prednisone on and off during that time. My weight had ballooned but I also managed to lose a great deal of weight while still on prednisone. I agree with others you need to speak to your consultant about the problems you are having and see if there are alternatives. Sometimes they just pile on more treatment without going back to the cause. In the meantime perhaps writing everything you eat down may make you think twice about eating it? Not sure how much you are able to exercise everyday but increasing that would help. I know how difficult it is when the munchies set in but I wasn’t even enjoying what I was eating I was just thinking of what I could eat next. Perhaps the diabetes clinic can help with this? I know there have been trials for an alternative to prednisone but think this is in connection to autoimmune diseases. Good luck I hope you get some solutions to help. Xx
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