Wondering how much "trouble" I could be in... I have Rheumatoid Arthritis and started treatment a few months ago. The doctor at the clinic I go to (he is a GP, have not been able to see a rheumatologist yet) started me on 60mg/day of Prednisone roughly 3 months ago. After about a month he told me to reduce to 40mg/day. I did that, and then as I was starting to experience more and more side effects - and didn't have another appointment with my doctor for almost two months - I took it upon myself to taper down to 20mg/day. Well, I ran out of prednisone last Friday - as I had been back to the clinic a few times for refills for various other medications I am on, I had advised the pharmacist several weeks before I was going to run out that I was going to need a new prescription as there were no refills left on the first prescription and, as I wouldn't be seeing the doctor before I ran out, what I needed to do. She said she would put in the request to the doctor. Long story short, the pharmacist put in the request, but the doctor has never signed it. I have called the clinic several times and they tell me a nurse will call back, but that never happens. Thankfully a friend of mine happened to have two 20mg tabs of prednisolone, which I took on Monday and Tuesday. Tried the clinic again today... still no call back.
Now I've been reading up on the effects of suddenly stopping prednisone and I'm getting pretty worried. In order to see the doctor with no appointment, I have to be at the clinic at 8am and it is not easy for me to get there at that hour - especially as I now have a messed up ankle - though I can get a ride later in the day. But this also involves getting time off of work (ok, I work for myself, but I am on several serious deadlines.. and as I have no health insurance and was turned down by medicaid because I live in a state with a governor that pretty much wants poor people to die... missing deadlines is not a good thing or I won't be able to afford doctor visits, medications, etc.).
Anyway, can someone please tell me how quickly this can cause problems? As in, if I don't hear from the nurse tomorrow that a new prescription has been approved, how long is it safe for me to wait? Or do I need to go down there tomorrow morning and pitch a fit until this prescription is filled? It's hard for me to tell if I am experiencing effects of adrenal insufficiency as most of them are effects I already have from rheumatoid arthritis and other health issues...
Thanks in advance for any advice... I'm pretty sure the answer is I need to get down there tomorrow, but if it can wait until Friday that's a bit easier for me. But after doing some online research I'm feeling pretty worried... and really pissed at the doctor as apparently he has potentially put me in a dangerous situation!
5mg of prednisone is a dose that completely suppresses the adrenals. You are on a lot more than that.
Some people get AI - some get Cushing's syndrome from the corticosteroids and others can have no effect from taking them - so it can vary from person to person.
I do highly suggest that you wean though - it will get harder as you get to smaller doses and your adrenals wake up. Once you get to 5mg, cut carefully and see if your adrenals wake up. Any nausea or vomiting is a bad sign and should be reported to the doctor.
Yes, I will continue to taper, and have studied up enough to know that I need to go slower and slower the lower it gets. I had gone in for a scheduled appointment in November, which is when the doctor instructed me to drop from 60mg/day to 40mg/day (no taper). That I did. Went to the clinic for an unscheduled visit in beginning of December due to concerns I was developing bronchitis - visit was brief and he did not bring up the prednisone. Because of the unscheduled visit, clinic moved my next scheduled appointment from Jan. 2nd to Jan. 25th. As I was experiencing more and more side effects from the Prednisone (weight gain, moonface, bruising, fingers cracking open and bleeding), I took it upon myself to keep reducing the Prednisone - this time tapered as by then I'd done more research - until I reached 20mg/day (still did it fairly quickly, over a period of a couple of weeks). This seems to be my "comfort zone" at the moment - I am 9 weeks into treatment with methotrexate (which, if it works, will "replace" the prednisone), but it hasn't really kicked in yet - at 20mg of prednisone I have "regained" a fair amount of inflammation, stiffness, pain, muscle weakness, etc... but am willing to deal with that - and will continue to try tapering slowly and see if I can go lower and still be able to function - and hopefully the methotrexate will kick in soon.
So as a follow up to my question yesterday... due to sleep (or lack thereof!) issues, did not wake up early enough to get to clinic early enough for a walk in appointment. Called them as soon as I got up, was told they couldn't transfer me to a nurse as phone system was screwed up (the place is small enough they could have walked 10 feet to nurse's station!), but they would leave a message. Relayed my concerns regarding withdrawal and asked again for a new prescription - even just a week's worth to give me time to get to the clinic early enough for a walk-in (with RA and my other issues, a little tricky to guarantee a specific day).
Thank goodness my neighbor needed to run some errands near my other doctor's office today so I stopped in and asked if he would write me a prescription for the prednisone (he is fully aware of all my conditions, medications prescribed by clinic doc, I bring him any new blood work results etc.) just in case.
The clinic nurse called me back about an hour after I had filled the script. Curious to see what would come of my request, I did not mention that I had already obtained a prescription from my other doctor. Nurse told me clinic doc refused to write me a script for more prednisone until he saw me. I asked if she was aware of the possible implications of sudden withdrawal and explained my concerns (very politely). She went and talked to the doctor again and then informed me he still refused to write the script, but that she would have him call me.
After that I was more than pissed off. Almost 3 weeks of requesting new script as I knew I would run out before seeing him (and as far as he knew, I was still on 40mg/day, in which case I would have run out a lot sooner - but every visit I've had with him he never even remembers what he has prescribed me - thankfully because I see two doctors I always bring each of them a full list of everything I am taking and the amounts) before my scheduled visit on the 25th, and never a mention that he would not do so without seeing me first. Clinic and doctor were fully advised as to why I was unable to make my scheduled appointment (unable to walk far on sprained ankle and as I pay out of pocket for all my medical needs, can not afford a cab). Doctor is also obviously aware that I have RA, along with sciatic issues, chronic fatigue, hyperthyroidism, herniated discs, sleep issues, etc... in other words, he knows that while I can plan ahead to get a ride to a scheduled appointment, it may take me a few days to come in for an unscheduled visit (and my scheduled appointment on the 25th was a Friday - so I wouldn't have been able to come in the next day anyway!).
He did call back - I did not answer the phone as I wanted to see what he had to say - and needed a moment to think this over and consult with ya'll back here and other places - as by then I was pretty much ready to take his head off. His message stated he was sorry to hear I had sprained my ankle, but that to "make sure we were on the same page" he needed to see me before he could write a new prescription. Now, the visit on the 25th is the ONLY visit I have had to cancel - and as I have mentioned, I went in for an unscheduled visit as soon as I was concerned about possible bronchitis or worse as I am prone to pneumonia, and now being on two imuno-suppressants, wanted to be very careful. The clinic moved my next appointment by a month, not me (and they did not give me a choice in the matter). I come fully prepared to every visit with my list of medications and amounts, list of concerns/questions/any new symptoms, etc. so that I am sure I do not forget anything and so that I do not waste his time. Other than deciding to continue to taper the prednisone on my own due to the length of time between visits, I take everything exactly as prescribed.
I do not know that I want to continue to see this doctor. I no longer trust him. I do not feel, given my various conditions and lack of transportation, that it is reasonable of him to deny me even a short prescription of a medication that is known to potentially have serious repercussions if stopped abruptly. Especially given that for all he knows I was still on 40mg/day - and that I did not come close to waiting until the last minute to request a new script. There was ample opportunity to advise me a new one would not be written until I was seen again - if I had been told that, I would have come in for an unscheduled visit before Jan. 25th!
I am really tempted to transfer all the remaining refills on my other prescriptions to another pharmacy, have any basic lab work I absolutely need at the moment done through an independent lab and have my other doctor manage my care (he originally diagnosed me with RA based on symptoms, only reason he isn't the one treating me for it is because I could not afford all the initial tests needed) until I can get in at another clinic.
But I also am aware that I am very upset over this whole situation - and this is not the first issue I have had with this doctor - from the beginning I requested the injectable form of methotrexate instead of the pill form as I had already done significant research and discussed it with my other doctor, and it is well accepted and known in the medical community that the injectable form has far fewer side effects and a much higher absorption rate. He said he had never heard that and refused to prescribe injections. After suffering through a month of being miserably sick three days a week from the pills (I take this medication once a week), and with the help of the pharmacist, I finally managed (after another month and a half) to convince him to prescribe me injections. Result? Zero side effects. He also should have been gradually increasing my dosage, which he also failed to do - until the injections, when it was increased all at once from 7.5mg/week to 25mg/week.
I apologize for the lengthly post.... just trying to give some more background here, as I feel like I have a decision to make, but don't want to make the wrong one. I also apologize if this is not the proper place to be asking advice, but figuring ya'll know a lot more about the repercussions of sudden withdrawal from prednisone than I do and therefore what a doctor's responsibility or appropriate action should be in this situation, I'm hoping maybe some of you don't mind giving me your opinion of how you would handle this kind of situation and whether I am out of line thinking he should have at least given me a small prescription to ensure I did not suffer any severe consequences or if it is acceptable to force me to come in for a visit first - especially when it is not possible to actually schedule an appointment any time within the next month (yes I have asked, every time I call) - and, even aside from my own issues with getting to the clinic at 8am for an unscheduled visit, there is absolutely no guarantee I will be seen. In fact, I just remembered that my second scheduled visit was cancelled because the doctor didn't come in that day - at that point I had to go in weekly - and I was (and did) expected to just show up at 8am the next day and hope to get seen.
Again, sorry for the really long post... and whether or not my request for opinions is appropriate, I very much appreciate yesterday's advice to get a prescription immediately, as thanks to my other doctor, at least I have done that. And I feel a lot better than yesterday - no headache, I am not short of breath as I have been for the past couple of days, the rash I was developing has started to fade, my skin is not flaking off all over large parts of my body as much, etc. - and that's just from one dosage of prednisone earlier today - so now it is clear I was definitely was experiencing some symptoms of abrupt withdrawal!
Not to be a downer, but they have recently cracked down on docs and they won't let them refill scripts without seeing patients. I know I hear in my doc office that they check for last visit before they refill and I have to see all my docs regularly so I can get refills - which means I spend a lot of time *ugh* in doc offices. So it might not be him - but a clinic rule to prevent abuse. See if you can see another doctor who has other hours that are more helpful to your schedule? Or if your file is there, can you see other docs in the clinic?
It sounds like you got a nasty case of steroid-induced Cushing's - which does not surprise me given that huge dose. That will only add to you being immuno-suppressed and BTW probably added to the weak ankles. I was sick so much while I had my pituitary Cushing's so I can relate.
Steroids are a double edged sword - you have to have enough, but too much and too little... horrible.
Yes, you could be right about crack downs - I know via my other doc that I have to go in in person for various scripts and we've discussed the crackdowns (and I'm' right there with ya about spending a lot of time in doctor's offices.. not to mention I pay for all of it out of pocket) - but I do feel that given I'd been requesting the new script for several weeks before it was due to run out (largely because I wanted to make sure the pharmacist could make sure I had 10mg tabs and not 20s so I could continue to try tapering down), there was plenty of opportunity to advise me if a new script couldn't be written until I was seen. And aside from all my other phone calls and checking in with the pharmacist... the day I had to call and cancel my scheduled appointment might have been a good time to inform me of that when I again requested a new script!
Unfortunately, there is only one other doctor at the clinic and it is really hard to get appointments, and this is the only clinic I've been able to get into - I live in Louisiana, and our governor is doing his best to destroy access to health care for the less than wealthy, so there's not a lot of choices.
And yes, you may be right about the Cushing's - my other doc said he was pretty sure I had Cushing's syndrome last time I saw him (he was kind enough not to require an actual visit to write me the prednisone script yesterday) and fully supported and encouraged my decision to keep tapering off the Prednisone, even if it reduces my ability to function at the moment. Yes, definitely a double edged sword! I wasn't aware that it might have contributed to the weak ankles, figured that was just from the RA... well, another reason to keep trying to get off this stuff (and hope that the methotrexate starts working) as the last thing I need is even more joint issues!
Thanks for your input... still concerned about this doc, but due to the health care situation here, chances are once I've calmed down a bit more I'll go back and see him and have a good talk with him about avoiding such situations in the future - if I'm advised of the rules, I am most happy to comply, even if at times it will mean a fair amount of inconvenience on my part!
You may be able to get down to a dose of pred where the Cushing's recedes and yet the symptoms are managed. Frankly 60mg would probably give it to most anyone... 40 is still a hefty hefty dose for a prolonged period so good luck on the taper.
I hope you can get the doc to be more communicative - it does seem that you only find out that you need the visit too late! That bites about the clinics.
I've been down to 20mg for close to a month now... a couple of friends (without asking) today said my face is starting to look less puffy... as it is Mardi Gras season here, will probably wait until that's over with (just another 13 days) before I resume tapering, as there will inevitably be a lot of running around and various things requiring manual dexterity - and by then will have two more of the increased doses of methotrexate in my system, so keeping fingers crossed it will start working for me soon - which will help with continuing the Prednisone taper.
And yes, hopefully I can work things out better with the doc. Have learned a lot about dealing with the clinic and making sure I follow up on everything - I've learned to know better than to expect x-rays, MRIs, etc. to actually be scheduled without several follow up calls, so I guess the prescriptions are another thing to add to my growing list of making sure I get the best care available to me at the moment. Sometimes seems like a full time job in it's own right managing a chronic disease!
Appointments are always scheduled before leaving... the only snag is coming in for an unscheduled appointment apparently results in them moving your next scheduled appointment a month forward, which is much of what precipitated this whole mess! Next time I've got to go in for an unscheduled visit, will see about insisting the regularly scheduled one remain as scheduled, as an unscheduled visit doesn't necessarily mean the doc and I have covered everything we would have during a normal visit. Live and learn...
And thanks, I will keep in touch over the rest of the taper - appreciate the support, as I'm aware that the last stretch of the taper may likely be the hardest. However, today's focus is once again working up the nerve to jam a 20 gauge needle in my thigh... can't wait 'til the day I can "just do it."!
I give myself shots daily for growth hormone - it took a while to get up the nerve to do that as well.
If your doc allows, he should give you an extra needle (or a used one) and practice on an orange using any fluid. The orange has a similar feel.
It also helps to squeeze the muscle, like you see many people do, and even to touch or rub - like the hard rub of the alcohol swab - and it actually desensitizes the area. Do not use a used needle on yourself though. BTW even though ENTs cannot by law give you a shot, most of them will set it up and some of them will give it to you anyway if you beg. Some states allow it - most do not - stupid since we die. In my emergency kit I include instructions on how to give the shot - as I already know I am useless when I am sick, it helps to have OTHERS know how to do it.
I also keep begging my doc to give me the nice thin needles they use in the office... no go... dang. Seems you have to get the box and the pre-packaged ones come with a not-so thin needle. How un-fun is that.
Finally worked up the nerve and did my own shot unguided - not bad at all once I got it over with ;) Sorry to hear you've got to do them every day... at least I just have to deal with this once a week!
I'm still working on the clinic pharmacy getting in my needles (yes, they ordered an injectable medication but not the type of needles I need), but thankfully a pharmacy down the street where I fill non-clinic scripts has been more than obliging to sell me a couple of needles a week after explaining the situation and showing them my vials of medicine (and yes, I always get an extra in case something messes up as I never want to reuse a needle - plus plan on ordering a box of the type I use online for backup (living in the land of hurricanes and such).
Very good point about including instructions in emergency kit - that never crossed my mind and is an excellent idea. Will print some out today!
While some folks on methotrexate use the thin needles and just do the "skin pop" I figure if I gotta use them, might as well go for the intramuscular injection and get the maximum benefit... and apparently the liquid is just thick enough to need the "big needles"... and lol, I tried the orange thing, but I'm not really sure it helped me out - I'd been having more of a problem with the psychological aspects (and I'm allergic to oranges!).
OH NO... in that case, stay away from the orange!!! I never heard that one...
After a while, the shots will be ok - but it does bite in the beginning. There are some addison's sites that have instructions with pictures. I have one printed, folded and in a plastic bag in my kit. I also have extra alcohol pads, contact info, anti-nausea pills (I have projectile vomited on people...), salt tablets, extra cortef pills all in a zipper bag marked emergency. Hah.
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