Hi karyn, thanks for your honest replies. I have to admit that had motrin (or the Australian equivalent) made a significant dent in my pain I probably wouldn’t have gone down the prednisone road, so I understand how you feel. I still think it’s worth looking at longer term DMARDS that have serious side effects much less frequently though, good luck.
karynailes1984 said:
Lol. Probably more scared. I guess I feel like if the question has to be asked then… its scary. Haha. I know that’s silly. The past few days…like twice I have kind of just wanted to cry/whine- “why does it have to be like this”. Because I do hurt. But I guess in my mind for me I just can’t justify it. And don’t get me wrong. If I were giving out advice to someone else. I would prob say well why not try it and see. But like I said I’m just not at that point yet.
Hi Gardener, you’re really welcome - yours have really helped me too, it’s not simple is it ?
Gardener said:
Thanks for asking the original question, Jen. The responses have been very helpful to me and so have the comments you just made about prednisone and MTX.
JenAus said:
Hi everyone, Thanks so much for all your comments, others experiences make a huge difference. It is particularly useful to be able to understand what’s attributable to the prednisone and what to the PsA. I definitely had a short fuse while taking 15mg, though it was pretty short with the PsA pain anyway. Headaches - withdrawal - I’d suspected that one, so thanks for the confirmation. I’ve already started MTX, so I think the prednisone was mostly designed as a bridge to the MTX. I’ve also seen some research that suggests that early in the disease it can be quite an effective as well. Unfortunately 5mg of prednisone doesn’t do much for me, and I’m not seeing anything yet with my 3rd 10mg MTX dose, so my bridge has a pretty unpleasant hole in the middle. Added another 5mg of prednisone at 2 yesterday so I could get out of bed again (I got up early and went to a child’s party in the morning but sat like a lump on the couch the whole time and then went back to bed), and still had to have a codeine to sleep last night. Seeing Rheumy tomorrow, and no MTX side effects so far, so maybe I’ll suggest we double the MTX. For those of you who put on weight, how long does it take before it shows up? I’ve been careful and only on low doses, so no dramas so far, but I’m a bit worried it will be one of those delayed things that sneaks up on you a couple of months after you start taking the prednisone.
Jen, I can share about the bridge aspect. With my other disease, I was on prednisone to control the flare. Once the flare was under control, I was put on 150 mg. Imuran (Azithioprine). Once on it, I was SLOWLY weaned off prednisone to make sure no more flares. I spent 18 mos. on Imuran and it achieved remission for me. DMARDS typically are better because their side effects are less than prednisone and if you go off the DMARD any side effect it had, leaves as well. Prednisone has lasting side effects, i.e., high blood pressure, diabetes, and other damage. The idea is to turn off the immune system and eventually slowly turn it back on in the hope that the reboot will help it return to normal. It sounds like for now, you just need to be on a higher dose to maintain the synptom-free lifestyle and once achieved, then add the MTX. Since you are already on MTX, you may want to ask your doctor about increasing prednisone to control the flare.
Prednisone, by the way is like testosterone. When I was on 60 mg. I was really aggressive. My kids called it PMS with an attitude, LOL! There is a really good book out called, "Coping with Prednisone" by Eugenia Zukerman.
By the way, I'm new, so if I am saying things that everyone already knows, I apologize. I tend to just jump in.
Gardener said:
Thanks for asking the original question, Jen. The responses have been very helpful to me and so have the comments you just made about prednisone and MTX.
JenAus said:
Hi everyone, Thanks so much for all your comments, others experiences make a huge difference. It is particularly useful to be able to understand what's attributable to the prednisone and what to the PsA. I definitely had a short fuse while taking 15mg, though it was pretty short with the PsA pain anyway. Headaches - withdrawal - I'd suspected that one, so thanks for the confirmation. I've already started MTX, so I think the prednisone was mostly designed as a bridge to the MTX. I've also seen some research that suggests that early in the disease it can be quite an effective as well. Unfortunately 5mg of prednisone doesn't do much for me, and I'm not seeing anything yet with my 3rd 10mg MTX dose, so my bridge has a pretty unpleasant hole in the middle. Added another 5mg of prednisone at 2 yesterday so I could get out of bed again (I got up early and went to a child's party in the morning but sat like a lump on the couch the whole time and then went back to bed), and still had to have a codeine to sleep last night. Seeing Rheumy tomorrow, and no MTX side effects so far, so maybe I'll suggest we double the MTX. For those of you who put on weight, how long does it take before it shows up? I've been careful and only on low doses, so no dramas so far, but I'm a bit worried it will be one of those delayed things that sneaks up on you a couple of months after you start taking the prednisone.
Hi Reid, thanks so much, I see your point. Sometimes I’m so busy tring to keep my job and look after my 2 year old I forget about the long term damage. Can’t see the woods for the trees so to speak! Ironically I wouldn’t describe this as a flare - nowhere near as bad ad the initial start-up flare I had, but certainly not remission!
Reid said:
I have been on as much as 60 mg of prednisone daily for another autoimmune disease (now in remission from that) and I can tell you that if you are experiencing setbacks at the lower dose, you are not on enough to manage your flare. If the flare is still quietly raging, you are still in what I call self-destruct mode. The immune system is still attacking. You need to get this under control so that more damage to your joints and organs is not going on. I had an auto immune disease called Polyarteritis Nodosa (PAN) that attacted the arteries in my legs. When I had a flare going on my arteries as well as the nerves were breaking down. The longer the flare went on, the more permanent damage was done. It’s really crucial for you to get with your doctor and make sure your flares are under control.
Hi Reid, thanks so much, I see your point. Sometimes I'm so busy tring to keep my job and look after my 2 year old I forget about the long term damage. Can't see the woods for the trees so to speak! Ironically I wouldn't describe this as a flare - nowhere near as bad ad the initial start-up flare I had, but certainly not remission!
Reid said:
I have been on as much as 60 mg of prednisone daily for another autoimmune disease (now in remission from that) and I can tell you that if you are experiencing setbacks at the lower dose, you are not on enough to manage your flare. If the flare is still quietly raging, you are still in what I call self-destruct mode. The immune system is still attacking. You need to get this under control so that more damage to your joints and organs is not going on. I had an auto immune disease called Polyarteritis Nodosa (PAN) that attacted the arteries in my legs. When I had a flare going on my arteries as well as the nerves were breaking down. The longer the flare went on, the more permanent damage was done. It's really crucial for you to get with your doctor and make sure your flares are under control.
Wow this is a very interesting topic with lots of different experiences!!
Gardener I say " do what you need to , to stay out of pain "and minimise the use of predisone as you can. Im a nurse and through that experience before I received the joy of PsA (not!!) I tried as an RN to believe peoples pain levels. The way I see it nobody can tell you how bad or good your pain is!! Therefore I will make the decision as to how to control my flares and if a short course of Prednisone is what I did then I will take it (but this is my last resort !!).
Im not sure if I have read it anywhere on any of the responses but one adverse effect of Prednisone is a decrease in Bone Density which can lead to fractures - this is usually after you have been on it continuously for sometime.
As Prednisone is a corticosteroid it is very good at decreasing an acute inflammatory response , hence why they use it. Also in order to get the Biological (in Australia anyway) you have to have proven that you have tried other ways to decrease the inflammation before Medicare will cover the cost (except for $35.40) and that the inflammation markers are decreasing but not normal. Hence why you need to have bloods before your prescription can be renewed. Im on Humira but it may have to stop because my CRP while initially dropping well 50 down to 28 then progressively down to 15 we are now trending up so if my next one is above 15 then I will most probably be refused and will have to commence on a new Biological but by taking the prednisone now while im in the middle of a flare then hopefully it will decrease my CRP and i can continue on Humira. Its awful having to have your bloods when you know you are in the middle of flare and praying they are good lol. Anyway good luck everyone and this site is fantastic , Im just sorry I didnt find it sooner :-)
Thanks so much for your info too - including the earlier info about weaning. Osteoporosis is actually the biggest long-term side effect I’m wary of - I have terrible family history on both sides of the family and know that for many over 60’s, something like a hip or leg fracture can suddenly and permanently ruin any quality of life, or even be fatal (if the PsA let’s me get that far with any quality of life).
Given you have had some experience at this (Reid, you too), do you think my Rhuemy was being realistic when he said I should see an improvement after 3 or 4 weeks on MTX? I wonder if he’s just thinking quietly that the prednisone will have settled it down and he can let me think it’s the MTX? 3 - 4 weeks seems really early from what I’ve read.
I prefer the concept and scientific evidence of the biologics, but despite not being able to wear my wedding or engagement rings for 4 months (and my hands actually being the least affected joints) I haven’t had an elevated ESR or CRP. I guess the most recent ones will be good because of the prednisone!
Dibray said:
Wow this is a very interesting topic with lots of different experiences!!
Gardener I say " do what you need to , to stay out of pain "and minimise the use of predisone as you can. Im a nurse and through that experience before I received the joy of PsA (not!!) I tried as an RN to believe peoples pain levels. The way I see it nobody can tell you how bad or good your pain is!! Therefore I will make the decision as to how to control my flares and if a short course of Prednisone is what I did then I will take it (but this is my last resort !!).
Im not sure if I have read it anywhere on any of the responses but one adverse effect of Prednisone is a decrease in Bone Density which can lead to fractures - this is usually after you have been on it continuously for sometime.
As Prednisone is a corticosteroid it is very good at decreasing an acute inflammatory response , hence why they use it. Also in order to get the Biological (in Australia anyway) you have to have proven that you have tried other ways to decrease the inflammation before Medicare will cover the cost (except for $35.40) and that the inflammation markers are decreasing but not normal. Hence why you need to have bloods before your prescription can be renewed. Im on Humira but it may have to stop because my CRP while initially dropping well 50 down to 28 then progressively down to 15 we are now trending up so if my next one is above 15 then I will most probably be refused and will have to commence on a new Biological but by taking the prednisone now while im in the middle of a flare then hopefully it will decrease my CRP and i can continue on Humira. Its awful having to have your bloods when you know you are in the middle of flare and praying they are good lol. Anyway good luck everyone and this site is fantastic , Im just sorry I didnt find it sooner
An elevated CRP or SED rate is a little deceiving. A SED rate will tell that you have had some type of inflammation in the past couple of weeks. That includes illnesses like the flu. CRP or C-Reactive Protein is a more current test but still does not tell you what the inflammation is from.
JenAus said:
Hi Dibray,
Thanks so much for your info too - including the earlier info about weaning. Osteoporosis is actually the biggest long-term side effect I'm wary of - I have terrible family history on both sides of the family and know that for many over 60's, something like a hip or leg fracture can suddenly and permanently ruin any quality of life, or even be fatal (if the PsA let's me get that far with any quality of life).
Given you have had some experience at this (Reid, you too), do you think my Rhuemy was being realistic when he said I should see an improvement after 3 or 4 weeks on MTX? I wonder if he's just thinking quietly that the prednisone will have settled it down and he can let me think it's the MTX? 3 - 4 weeks seems really early from what I've read.
I prefer the concept and scientific evidence of the biologics, but despite not being able to wear my wedding or engagement rings for 4 months (and my hands actually being the least affected joints) I haven't had an elevated ESR or CRP. I guess the most recent ones will be good because of the prednisone!
Dibray said:
Wow this is a very interesting topic with lots of different experiences!!
Gardener I say " do what you need to , to stay out of pain "and minimise the use of predisone as you can. Im a nurse and through that experience before I received the joy of PsA (not!!) I tried as an RN to believe peoples pain levels. The way I see it nobody can tell you how bad or good your pain is!! Therefore I will make the decision as to how to control my flares and if a short course of Prednisone is what I did then I will take it (but this is my last resort !!).
Im not sure if I have read it anywhere on any of the responses but one adverse effect of Prednisone is a decrease in Bone Density which can lead to fractures - this is usually after you have been on it continuously for sometime.
As Prednisone is a corticosteroid it is very good at decreasing an acute inflammatory response , hence why they use it. Also in order to get the Biological (in Australia anyway) you have to have proven that you have tried other ways to decrease the inflammation before Medicare will cover the cost (except for $35.40) and that the inflammation markers are decreasing but not normal. Hence why you need to have bloods before your prescription can be renewed. Im on Humira but it may have to stop because my CRP while initially dropping well 50 down to 28 then progressively down to 15 we are now trending up so if my next one is above 15 then I will most probably be refused and will have to commence on a new Biological but by taking the prednisone now while im in the middle of a flare then hopefully it will decrease my CRP and i can continue on Humira. Its awful having to have your bloods when you know you are in the middle of flare and praying they are good lol. Anyway good luck everyone and this site is fantastic , Im just sorry I didnt find it sooner :-)
Prednisone, when it works, is so amazing. The first time I took it, within days I went from limping to playing soccer with my kid. However once I stop the Prednisone, it all goes bad again, and maybe even worse. Therefore, I don't use it and hope I never have to again as the side effects (weight gain, diabetes risk, loss of bone density) are too big for the temporary relief it gives.
That said, it is very likely I'm going to have to go on biologicals next as for the first time I have a very swollen finger and way too many aches and pains for someone taking 25mg of Methotrexate and the maximum dose of Sulfasalazine. I'm particularly worried about the increased risk of Melanoma (had one 15 years ago) and Leukemia (grandmother died of it at 42) :-(
I keep trying to convince myself that I have little quality of life as I am now and with zero exercise, will probably not live long anyway if I don't get help.
Good luck with the Prednisone and hopefully it will be enough to put you into remission.
I was very interested to read your post about what you have to do to still be eligible for Humira.
Is this every month? I think it's horrible that the system is set up in such a way that you have to take an additional medication just to give you acceptable numbers. If you do this then how can you tell if it's the Humira that's working or is it the Prednisone? Why wouldn't they just let you try it for 6 months and go from there. I mean, I doubt anyone would continue taking a medication with the risks it has if it's not working...
I'll be seeing my rheumy tomorrow so I will definitely be asking her about how it all works.
Dibray said:
Wow this is a very interesting topic with lots of different experiences!!
Gardener I say " do what you need to , to stay out of pain "and minimise the use of predisone as you can. Im a nurse and through that experience before I received the joy of PsA (not!!) I tried as an RN to believe peoples pain levels. The way I see it nobody can tell you how bad or good your pain is!! Therefore I will make the decision as to how to control my flares and if a short course of Prednisone is what I did then I will take it (but this is my last resort !!).
Im not sure if I have read it anywhere on any of the responses but one adverse effect of Prednisone is a decrease in Bone Density which can lead to fractures - this is usually after you have been on it continuously for sometime.
As Prednisone is a corticosteroid it is very good at decreasing an acute inflammatory response , hence why they use it. Also in order to get the Biological (in Australia anyway) you have to have proven that you have tried other ways to decrease the inflammation before Medicare will cover the cost (except for $35.40) and that the inflammation markers are decreasing but not normal. Hence why you need to have bloods before your prescription can be renewed. Im on Humira but it may have to stop because my CRP while initially dropping well 50 down to 28 then progressively down to 15 we are now trending up so if my next one is above 15 then I will most probably be refused and will have to commence on a new Biological but by taking the prednisone now while im in the middle of a flare then hopefully it will decrease my CRP and i can continue on Humira. Its awful having to have your bloods when you know you are in the middle of flare and praying they are good lol. Anyway good luck everyone and this site is fantastic , Im just sorry I didnt find it sooner :-)
Yes 3-4 weeks does sounds early I was told 8-12 weeks hence why theres a delay on putting people on biologics due to waiting on the Mtx to work or not! I didnt see much response before 6 weeks. But then Ive always been on lots of medication as within weeks from my first ever flare in my thumb base (didnt know it was PsA then) it quickly progressed to many joints especially in my hands , feet and SI joints si its difficult to know which one works the best unless I run out of a specific one and then its interesting to say the least lol!!
Hi MissG yes Medicare is a pain!! but Humira without them is $1860 per month!! They have to accept you on to it every 3 months and if the numbers dont cut it then you get rejected. I suppose for such an expensive drug they have to make sure the right people are getting it and are benefitting from it.There are a few biologics out there and the response is good but unfortunately they do come with drawbacks liver etc issues. Melanoma is very rarely seen from biologics it is mostly non-melanoma skin cancers which Im happy (not!!!) to say that I have aquired and so the cutting has begun! But I certainly feel it if I miss my dose of Humira by 48hrs and in all reality I have to weigh up the pros and cons of being able to have a more active life than one where it is a big deal to even move. Discuss your concerns with your Rheumy and it doesnt hurt to maybe give one a try for 6 months to see if you get any relief. Im over my pain at the moment but its important to stay positive .
So how do they tell if you have some damage to tendons and ligaments. That’s where a lot of my pain comes from.
Also I guess that is my biggest fear with steroids or any med. Is that if I take it and stop-that my symptoms will come back worse. And I guess it scares me that if it gets worse but I have to stop taking the stronger meds-say steroids. Maybe then motrin. (Which I take occasionally now-only for headaches though.) Wouldn’t work at all. And right now-i will notice a slight to moderated difference when I take it. Feel better for an 2 hours or so and then back to normal. But its something. I think that I think too much. Lol
I have been on prednisone several time mostly when I feel a flare coming on. It has always worked great at taking down the swelling and relief of the pain, the problem I find is that it only hides the probablem because no matter how long I am on it the swelling always comes back with in a few days after I finish my dose. I am told it is not good to be on long term so I usually only take it untill I can get in to get cordizone injections. Which seem to work more long term for me.
After having a severe allergic reaction to Humirathat put me in hospital I have been on prednisone since December. Started with 20mg and slowly came down to nil. I felt the best I have felt for years. After 2 weeks without it I had a major flare and so went back on 15mg then 10 mg then 5 mg but then started to have incresed inflammation so back to 7.5 mg which seems to be holding it at bay. I a friend who is a medical doctor as well as a medical researcher who says that such a low should be ok for years as long as I have my sugars and bone density checked . His attitude is that the side effects at this dose are no worse than being on other drugs but as I'm getting such a benefit and I am able to exercise quite hard the overall risk should be less on prednisone. I will see my rheumo next month and will argue to stay o it if my blood tests are ok. Good luck
Hi everyone, to update, I saw my Rheumy and seems that he is treating prednisone much as Allan’s friend recommends; doses at 10mg and under don’t have a substantially higher risk of bone density, weight, blood pressure issues etc, so on balance it is better to be in a state to exercise than not taking prednisone at all and being a lump. He seemed most comfortable with 7.5mg or less, and note that risks of significant side effects start to increase significantly from 15mg up. I guess the MTX has even lower side effects for those who can tolerate it and it works, hence the reason I’m on MTX as well.
Like Allan, I believe exercise is a really important management tool, because I have seen first hand the result of not being able to exercise. My dad had unexplained back pain for years, eventually he had problems with his shoulder - frozen shoulder they said - calcification of the joint. And on it went, with an eventual diagnosis of fibromyalgia and no explanation for the funny joint things that kept turning up, or gastric symptoms. Only now has it occurred to us it might be inflammatory (they didn’t use MRI back when they were attempting to diagnose him). Anyway, he little visible swelling, but the many years of not being able to exercise due to pain and fatigue has atrophied muscle terribly, and magnified ROM issues, and certainly hasn’t made a positive contribution to his state of mind.
So for me, if I can keep the symptoms at bay well enough to allow me to function well and exercise, whist staying at or below the 10mg “cap”, I think it’s worth it.
Also very happy because the Rhuemy says that so far I have no relative visible on MRI!
This is not a high-tech way of checking for damage to tendons and ligaments, but my rheumatologist showed me how she feels for some kinds of damage when she checks my hands and feet. Her hands are experienced at this, and mine are not, but now I can also detect what she feels, though not, of course, so subtly. She had me follow her fingers along the ligament over the metacarpal (the bones of the hand are metacarpals) of the finger where I have the worst pain. As I pass my fingers from the base of my palm up to the base of my middle finger, I can feel the hardened, widened and elevated strip of ligament. My next finger over is not involved, and the ligament is much subtler to trace: it is soft, smaller and not elevated. I can do this with the ligaments for each of my fingers. Similarly, I can feel along the metatarsals (the long bones in the feet) from the middle of my feet to the bases of the toes. Where I feel hardened, thickened, elevated strips of ligament tissue over the metacarpals and metatarsals is where I have pain that then extends to various lengths along my fingers and toes. This is where damage has already been done. Where I feel soft tissue, damage may or may not have started, but at the moment the progress of any damage is being prevented by the prednisone I'm taking. I'm trying to get a good feel for the different places in my body, because I don't just consider myself a partner in treatment of this disease - I'm the senior partner, because it's my body!
If you could look at the toes of my right foot, you could easily tell where tendons and ligaments have been damaged because you can see where the chronic inflammation of connective tissue has hardened my toe joints and pulled my toe joints out of place. The toes of my right foot look nothing like the toes of my left foot, which look like the "old normal" toes I used to have.
I work at keeping a collection of my own medical records, so that I always have them to share with a physician or physical therapist, and I have them for my own reference. I have had many x-rays of my feet, and although tendons and ligaments aren't visualized all that well on x-rays, the progressive negative changes in my toes is obvious.
The steroids turn down the thermostat on the autoimmune process with the objective of stopping more damage from occurring. They don't reverse damage, but they can halt it. Since we're each unique, it takes different doses of a medication like prednisone to work for each of us. During the time we're on an optimal dose of prednisone, we're buying time in which our disease does not get worse.
karynailes1984 said:
So how do they tell if you have some damage to tendons and ligaments. That's where a lot of my pain comes from. Also I guess that is my biggest fear with steroids or any med. Is that if I take it and stop-that my symptoms will come back worse. And I guess it scares me that if it gets worse but I have to stop taking the stronger meds-say steroids. Maybe then motrin. (Which I take occasionally now-only for headaches though.) Wouldn't work at all. And right now-i will notice a slight to moderated difference when I take it. Feel better for an 2 hours or so and then back to normal. But its something. I think that I think too much. Lol
This is not a high-tech way of checking for damage to tendons and ligaments, but my rheumatologist showed me how she feels for some kinds of damage when she checks my hands and feet. Her hands are experienced at this, and mine are not, but now I can also detect what she feels, though not, of course, so subtly. She had me follow her fingers along the ligament over the metacarpal (the bones of the hand are metacarpals) of the finger where I have the worst pain. As I pass my fingers from the base of my palm up to the base of my middle finger, I can feel the hardened, widened and elevated strip of ligament. My next finger over is not involved, and the ligament is much subtler to trace: it is soft, smaller and not elevated. I can do this with the ligaments for each of my fingers. Similarly, I can feel along the metatarsals (the long bones in the feet) from the middle of my feet to the bases of the toes. Where I feel hardened, thickened, elevated strips of ligament tissue over the metacarpals and metatarsals is where I have pain that then extends to various lengths along my fingers and toes. This is where damage has already been done. Where I feel soft tissue, damage may or may not have started, but at the moment the progress of any damage is being prevented by the prednisone I'm taking. I'm trying to get a good feel for the different places in my body, because I don't just consider myself a partner in treatment of this disease - I'm the senior partner, because it's my body!
If you could look at the toes of my right foot, you could easily tell where tendons and ligaments have been damaged because you can see where the chronic inflammation of connective tissue has hardened my toe joints and pulled my toe joints out of place. The toes of my right foot look nothing like the toes of my left foot, which look like the "old normal" toes I used to have.
I work at keeping a collection of my own medical records, so that I always have them to share with a physician or physical therapist, and I have them for my own reference. I have had many x-rays of my feet, and although tendons and ligaments aren't visualized all that well on x-rays, the progressive negative changes in my toes is obvious.
The steroids turn down the thermostat on the autoimmune process with the objective of stopping more damage from occurring. They don't reverse damage, but they can halt it. Since we're each unique, it takes different doses of a medication like prednisone to work for each of us. During the time we're on an optimal dose of prednisone, we're buying time in which our disease does not get worse.
karynailes1984 said:
So how do they tell if you have some damage to tendons and ligaments. That's where a lot of my pain comes from. Also I guess that is my biggest fear with steroids or any med. Is that if I take it and stop-that my symptoms will come back worse. And I guess it scares me that if it gets worse but I have to stop taking the stronger meds-say steroids. Maybe then motrin. (Which I take occasionally now-only for headaches though.) Wouldn't work at all. And right now-i will notice a slight to moderated difference when I take it. Feel better for an 2 hours or so and then back to normal. But its something. I think that I think too much. Lol
Thanks for that info. I am in Adelaide and currently failing the DMARDS. It doesn't sound like I will qualify for the biologics anyawy. It is so frustrating that they will withold potentially effective treatment, or remove it unless you check all their boxes. This is peoples lives they are playing with. They are concerned about the cost to the government of subsidising these drugs. I think the cost to the government will be just as high if we end up on the disability pension or needing supporive care because all the cheaper medications have ruined multiple organs. How can profit be made form health care. I find this so incredibly offensive. Good health care should not just be for the wealthy. Same for education. Well that was my rant. I hope it all works out for you.
Dibray said:
Wow this is a very interesting topic with lots of different experiences!!
Gardener I say " do what you need to , to stay out of pain "and minimise the use of predisone as you can. Im a nurse and through that experience before I received the joy of PsA (not!!) I tried as an RN to believe peoples pain levels. The way I see it nobody can tell you how bad or good your pain is!! Therefore I will make the decision as to how to control my flares and if a short course of Prednisone is what I did then I will take it (but this is my last resort !!).
Im not sure if I have read it anywhere on any of the responses but one adverse effect of Prednisone is a decrease in Bone Density which can lead to fractures - this is usually after you have been on it continuously for sometime.
As Prednisone is a corticosteroid it is very good at decreasing an acute inflammatory response , hence why they use it. Also in order to get the Biological (in Australia anyway) you have to have proven that you have tried other ways to decrease the inflammation before Medicare will cover the cost (except for $35.40) and that the inflammation markers are decreasing but not normal. Hence why you need to have bloods before your prescription can be renewed. Im on Humira but it may have to stop because my CRP while initially dropping well 50 down to 28 then progressively down to 15 we are now trending up so if my next one is above 15 then I will most probably be refused and will have to commence on a new Biological but by taking the prednisone now while im in the middle of a flare then hopefully it will decrease my CRP and i can continue on Humira. Its awful having to have your bloods when you know you are in the middle of flare and praying they are good lol. Anyway good luck everyone and this site is fantastic , Im just sorry I didnt find it sooner :-)
I saw my doctor last week and she took one look at my super fat middle finger and generally swollen and painful hands and said that we needed to put an application in for biologicals. Frustrating thing is that she thinks I may just barely qualify if that. My blood work was on the borderline despite the fact that my hands are so effected it's hard to write with a pen, and my feet have me limping for so long now that even when I think I'm walking normally, I still have some kind of limp happening, not to mention the 24/7 back pain. But still, I may just qualify if I'm lucky.
I too think it's ridiculously short-sighted for Medicare to make it so difficult to gain access to them. There is no way I could work a full-time job (even a seated one) the way I am now, and I feel my overall health has gone down hill the past 2 years. I'm sure if I can't find a solution I'll end up with other chronic problems due to restricted movement, weight gain, etc. Yet I know from the times my meds did work that I'm a completely different person when the pain is gone: loads of energy, going out there and contributing.
One worrying thing she told me was that Medicare gives you 3 chances. If you have failed on a biological 3 times, then that's it, no more biologicals, even if a new one comes out. WTF? I keep thinking if I haven't been successful on the Meth and Sulfa, then maybe I'm going to be hard to treat. I'd hate to think a new drug could come out in 5 years and I may end up using all my chances. I know I'm jumping the gun here - blame it on health anxiety!
