Sick of taking prednisone every time I have a ... - Behçet's UK
Sick of taking prednisone every time I have a flare, and being prescribed percocets. Any suggestions on pain medication?
I stay on a low dose of pred, have done for many years now, and up the dosage when I have to. I take a lot of medication to keep it under control, which for a lot of the time work for me. Among them are anti-inflammatories and colchicine (which is very good) and for pain I have Gabapentin (excellent).
It took over 15yrs to get my diagnosis, so I have now had it for over 30 years, although it is thought, after trawling my medical records that I have had it all my life. It is getting easier to get a diagnosis now as more is being learned about it. I am 53 now, so I suppose I am now used to it. I found it difficult at first because no-one understood and often was told that it was all in my head and I was making things up, but by staying positive (when I can) and not letting it beat me, I manage to live a relatively normal way of life.
There are lots of lovely people on this forum who will always try to help each other, even if only to give you emotional support, so never feel that you are alone. Everyone understands what you are going through and how you feel and even if you think it is silly to ask certain questions still ask them, because to us there is no such thing as a silly question and someone will always have some advice for you. The more you ask, the more you will understand this condition and hopefully then it will make you more able to cope with it.
After all that I think I should say hello before I say bye, so take care and keep strong. Don't forget that we are ALWAYS here for you x
Hi, can I please ask why you dont want to take the prendisolone? I find it is my life saver! I have just started a very bad flare today, ulcers everywhere from top of head to soles of feet - so painfull, even on tips of fingers - so typing is sore, but the first thing I looked for was steriods, at this point I would take poison if I thought it would help! but I have noticed on the site that lots of people dont like being prescribed steriods and am wondering why?
It he's with the flare yea, but taking it for a long time can cause serious effects, if you ago suddenly taking it, it can shut your liver down.
Yes steroids can be very harmful over long-term as it can cause diabetes, osteoporosis, weight gain and muscle loss, heart disease, high blood pressure, and so on. But the worst thing is if you suddenly stop taking it without tapering down the dose, your adrenal glands will shut down and you will go into an "addisonian crisis" due to low cortisol which is life-threatening.
When you take oral steroid, your brain detects that you have adequate level of stress hormone running through your bloodstream (this is the "cortisol" produced by the adrenal glands); therefore the pituitary gland will stop releasing ACTH which is a hormone that stimulates the adrenal glands to function and produce cortisol. This in turn, temporarily shuts down the adrenal glands. When you stop taking the oral steroids abruptly, you don't give your body enough time to re-adjust and your adrenal glands will still be sluggish.
Overtime, they will begin to work again and start producing cortisol again, but in the meantime, you need to continue taking a low-dose of the steroid, tapering it down slowly. Once you go into a low-cortisol crisis, you become seriously and critically ill which can lead to coma or even death. This is the main concern surrounding steroid use and why many doctors are very reluctant to hand them out. In the short term they are amazing for autoimmune and inflammatory diseases, but over time, they begin causing more harm than good.
Another concern is that a person's body can become "reliant" on the steroid in a way because if a person takes them for a long time and frequently to help with their autoimmune disease, then when they try to decrease and stop them, the body can flare up worse-- this just causes a viscious cycle because you stop them when things settle, but then by doing so, it makes you feel worse again, so then you go back on them, and it just continues.
Helps* if you stop suddenly it can cause serious harm
Hi living bechets,
I find prednisolone is a life saver. I take 50mg a day and then have pulses when things get bad. Without this I don't know where I would be.
For pain medication I seem to have settled on a good combination. I see the pain team on most admissions and they have got things well organised for me. My daily medication is fentanyl patches of 125micrograms. I have breakthrough medication of 30mg of liquid morphine. When in hospital and things aren't going so well they add ketamine infusions that can be run IV or subcutaneous. This works well.
I would suggest you ask to be refered to a pain team. They have so many clever things up their sleeves. Also talk through your anxiety of taking pred with your rheumatologist.
Good luck with this.
Felicity
I've noticed more than one person mention ketamine for pain. I'm in the USA and ketamine is NEVER used for pain! I'm an RN too and ketamine is rarely used, period. At any rate, I also take a daily low dose of Prednisone then large doses coupled with pain meds during flares. The side effects are often nasty but so are flare ups. We need to find what works best for us and decide if the benefits outweigh the risks. This isn't the type of disease that typically responds to specific treatments; such as heart disease or diabetes.
my pain has been so much more controllable since my GP put me on 'Transtec' transdermal patches. I started on a low dosage and now on 52.5 micrograms every 4 days and have to say I am in a real good place. Not seen much on here in regard to pain patches does anyone else use them?
