I finally got some relieve after many months from a course of prednisone. How many courses can you have in a row? It has done what months of Mtx could not do. It was sort of a rescue med because I could barely walk . Will it last for awhile? Any personal experiences will help me .
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Predi is the most dangerous of all the drugs available to us. It works by shutting down the adrenal system. Its sorta like controlling an asthma attack by putting a plastic bag over your head until you pass out. - it works. As others have said only when severe VERY SEVERE. They will often run a course after starting a new drug in order to knock down the inflammation an let the drug take over. If you DON"T get longer relief after then they will change primary drugs.
A more droll doc will tell you IF you only want to live 5 years or less, they will keep you on high doses of predi. BUT the side effects make PsA seem like a walk in the park. yes it is a rescue med. It will help you get the MTX (or other working) but YOU also have some responsibility to get the most out of it. you have flexibility and movement you haven't had in a while (likley) NOW you need to keep moving before things rust again. Treasure the fact you can now havwe hurt from overdoing...... its a gift.
Most of us who finally have some control over the disease (sometimes taking years) have had a predi "cure" and wished it could last......
Very short lived!
Forgot to tell this. My rhumey is allowing me to stay on the 5 mg a day I have been taking since April till I get approved for the newer drugs.
I am really not doing well. My wrist are so swollen and I aqm unable to raise my right arm because of the inflammation. I am hoping the new drugs help because I would like to be able to use my hands again. All of my joints are affected by this conditions. The little predisone is qjust barely touching the problem but at least it gives my miminial support. The rheumy is wanting me to go off the little dose and save the big stuff for the flares. Nothing comes easy with this condition and I am grieving for my old body and trying to accept the new one.
If you get to specific joints getting shot up doesn't have the nasty effects of the oral.....
Tried that in shoulder and knee no relief. The hand dr wants to wait and see what the new medicine does
I hear ya! I'm on the last week taper of a month long course of Pred. It was Glorious! I did stuff I'd not been able to for months. It was nice while it lasted. I'm down to 1 a day then nothing for the next week and the "old feelings" are a comin' back. I knew they would though. I went on it reluctantly as a bridge between ceasing mtx and starting Enbrel. Now it will be Enbrel's turn alone soon.
In a long term course of high dose prednisone - The mood swings, anxiety, body changes, and more are crazy-making. Wasn’t worth the pain relief to me.
Listen to Lamb. Steroids can produce a "high" that will make you a believer, but it is quite dangerous. I owe my diabetes to Steroids (Methylprednisolone and Prednisolone). I had a doc that kept me in it with up to 32mg for 4 years. It can also be habit-forming. I had "seizures" trying to get them out of my system. Careful!
After having a allergic reation to Humira I had been on a midlevel dose of prednisone since December last year. I am now on 5mg with enbrel as I can't tolerate mtx. However, my plantar fascia tendon in the right foot, which has always been affected by psa, has now torn and there is debate as to whether the prednisone has been the trigger. Nothing like a new pain to take your attention off the the old ones!
D: how is Enbrel doing for you. Any suggestions, I am about to start it.
DMaraJade said:
I hear ya! I’m on the last week taper of a month long course of Pred. It was Glorious! I did stuff I’d not been able to for months. It was nice while it lasted. I’m down to 1 a day then nothing for the next week and the “old feelings” are a comin’ back. I knew they would though. I went on it reluctantly as a bridge between ceasing mtx and starting Enbrel. Now it will be Enbrel’s turn alone soon.
@ Rebel mom
It may be too early to tell if Enbrel is working. I'm on weekly injections of a pre-filled syringe. I opted for this instead of a pen device since I give insulin shots to my son and prefer the control of doing it myself. I've only had 3 doses. I felt pretty good, but much of that was due to the prednisone I believe. I get really tired the next day, but the mtx did that too. I'm going to give it some time and post something once I know more. The other thing is I get a big red spot at the injection site. The injection site does hurt sometimes, but it isn't anything that would distract me too much. I hear so many good things about the Enbrel. It can be a real miracle for some. I hope it is for you and I both!
me too, please keep me posted!
5mg's not a high dose. Many docs keep that low dose because it appears not to be too dangerous. But yes, steroids can affect your bones.
Oops! Affects your bone density.
I have a tear in my left foot which they treated with therapy and a boot. I had that long before the dose of steroids so the prednisone was not the trigger for me. The tendon was stretched and inflamed and short of not walking on it is very hard to heal. Good luck with it.
Allan said:
After having a allergic reation to Humira I had been on a midlevel dose of prednisone since December last year. I am now on 5mg with enbrel as I can't tolerate mtx. However, my plantar fascia tendon in the right foot, which has always been affected by psa, has now torn and there is debate as to whether the prednisone has been the trigger. Nothing like a new pain to take your attention off the the old ones!
Lucia- great topic. Prednisone can be enormously helpfulI to improve quality of life but there are long term and short term consequences as the overall dose and length of treatment increases including cardiovascular, osteoporous, etc. As a PSA patient myself and RPH, I have been on long term Pred for about 3 years now. I started with typical 20mg (it was great) and then tapered to 0mg over 3-4 weeks during flares but I was concerned as a RPh (as with my Rheumy) that this was not a very good option for the longterm.. and I found that each time I came off, it seemed even worse (did you see this too?). Biologics were out since I'm only 40 and are controversial so we both agreed that there maybe something else that coud be done since Pred worked so well for me (I could walk). Anyway, I kept a log (Blood pressure, pulse, weather, how I feel and number of steps from a pocket pedometer) for over a year and figured out while on very low dose Pred (2.5mg) how to predict when a flare is coming and do a minitaper... we are using 7.5 mg as an upper limit under my doctors care when I get a sign predicting something is getting worse. I'm not including all the details but your doctor can suggest a standard taper... **By the way ** I do NOT suggest anyone dose themselves without guidance from your doctor.. ever !
Anyway there maybe this "sign" that a flare is coming that you might find with the help from your doctor and you might be able to head it off with a much lower dose and keep it better controlled. In my case, I know if it is getting really cold such as snowstorm or if I find my pedometer is reading above 5000 units when I get home from work (steps?) in a day that I need to take it easy and it might be coming.
Long term steroids may not be for everyone & of course sparingly, but remember that asthma patients actually are using much higher and longer doses than what are typically used for "us" so again it depends a lot on the experiences of your Rheumy and what he/she thinks based on your health profile what would fit you best. At a minimum, you should monitor your Blood pressure and pulse and have blood work routinely if you go with longterm steroid therapy... a daily log is a nice thing to share with your dr - it helps for piece of mind as well and you can chart your progress.. Good luck!
Thank you so much for all the info. I have an appointment with my Rheumy coming up so I am going to ask her about the use of steroids. I don't know if a low dose will help because I have it in multiple joints. I am just so happy to feel like myself for the first time in at least a year. I was walking and moving as a normal person again. I do have a refill for another course of steroids but I want to save it for when I need rescuing again.
BigFoot said:
Lucia- great topic. Prednisone can be enormously helpfulI to improve quality of life but there are long term and short term consequences as the overall dose and length of treatment increases including cardiovascular, osteoporous, etc. As a PSA patient myself and RPH, I have been on long term Pred for about 3 years now. I started with typical 20mg (it was great) and then tapered to 0mg over 3-4 weeks during flares but I was concerned as a RPh (as with my Rheumy) that this was not a very good option for the longterm.. and I found that each time I came off, it seemed even worse (did you see this too?). Biologics were out since I'm only 40 and are controversial so we both agreed that there maybe something else that coud be done since Pred worked so well for me (I could walk). Anyway, I kept a log (Blood pressure, pulse, weather, how I feel and number of steps from a pocket pedometer) for over a year and figured out while on very low dose Pred (2.5mg) how to predict when a flare is coming and do a minitaper... we are using 7.5 mg as an upper limit under my doctors care when I get a sign predicting something is getting worse. I'm not including all the details but your doctor can suggest a standard taper... **By the way ** I do NOT suggest anyone dose themselves without guidance from your doctor.. ever !
Anyway there maybe this "sign" that a flare is coming that you might find with the help from your doctor and you might be able to head it off with a much lower dose and keep it better controlled. In my case, I know if it is getting really cold such as snowstorm or if I find my pedometer is reading above 5000 units when I get home from work (steps?) in a day that I need to take it easy and it might be coming.
Long term steroids may not be for everyone & of course sparingly, but remember that asthma patients actually are using much higher and longer doses than what are typically used for "us" so again it depends a lot on the experiences of your Rheumy and what he/she thinks based on your health profile what would fit you best. At a minimum, you should monitor your Blood pressure and pulse and have blood work routinely if you go with longterm steroid therapy... a daily log is a nice thing to share with your dr - it helps for piece of mind as well and you can chart your progress.. Good luck!