Had call from GP this am to tell me I had been on Pred for nearly four years and it was too long. GP is referring to Rhuematica. Told her I was tapering to 3 and all going well but I would not rush because do not want to go back to 5 mg again .
Anyone else being called
I've been on Pred for 10 years (now at 5 mg) - and I'm not dead yet!!Rheumatologist are just as bad (often worse) of trying to get you off pred. If only they knew (believed) how much pain we go through. Good luck!
Well, we know which of the two of you is right! Stick to your guns and if you need to print off or point her to anything you may find in FAQs re tapering, do that. 😏
I've been on pred for over 12 years, nearly 12 1/2, a large proportion of the time at above 10mg. I have no pred side effects that have been identifiable and my rheumy is quite laid back about it since HE knows PMR often lasts a long time, much longer than the 2 years touted by too many doctors. Several sources admit that it lasts up to 5 to 7 years. I'm just unusual in requiring as much as I do.
Prof Dasgupta told us about 18 months ago that he often keeps patients on 2-3mg for an extended period of time as it reduces the risk of relapses. If 3mg is good enough for him - it should be good enough for your GP and I am slightly appalled that your GP thinks that in the current climate he should be using up a rheumy appointment for someone obviously doing very well and on 3mg - because now it is adrenal function as much as PMR that calls the shots. I imagine though that when they triage his referral it will be filed at the bottom of the queue for an appointment!!!
My, my, your GP must have a direct line to your PMR or a crystal ball ! 🤦🏻♀️
I too had a call from my GP a few months ago for the same thing (2 years on Pred). I emailed her my Pred history so she could see my reducing plan (+ 1 flare) and I told her about this helpful site. She was happy to let me carry on my merry way and in my medical notes she has written "this patient is an expert on PMR and is managing it herself" !!! Good luck !
My GP put me straight onto the rheumy four and a half years ago then said oh she just put you on the steroids. Rheumy has since added MTX to help me reduce the pred. Now on just 1/4mg but if I try to add zero pred days. pain happens. I chose to reduce the MTX to 15mg weekly and found less side effects.
It makes you want to scream, doesn't it! No-one really understands these diseases yet they are all experts. You know your body and I'm sure you don't want to be taking these drugs if you didn't need them. So hold tight and stick to your guns. Good luck!
Hi,
My guess is that this is a GP who is kicking her heels and thinking how she can develop her referral fee income in these covid times or on the other hand it's some other heel kicker up the food chain concerned about the overall cost of prednisolone being prescribed!
The rhuinatologist will most likely look to try you on a couple of much more costly "steroid sparing" immuno-suppressents which may or may not agree with you and then in my experience you'll still end up back on the prednisolone. (yum)
Agree with "sticking to your guns". You're doing great. I've been at this for 7+ years and have never got below 10 mg. If I ever get to 3 mg I'd be happy to stay there for as long as it takes.
Sounds like you have your situation well in hand. Tapering to 3 is great! Since my last flare, post Covid, I have just managed to return to 6 mg., and it seems I will remain there for a few more weeks.I was diagnosed with PMR in 2013, and been in pred since then. My rheumy checks in with me, but basically lets my PMR dictate how I use Prednisone.
I have no side effects, no diabetes, cataracts, weight gain, etc.
the day I get off Pred will be a day of celebration, but for now , I am just ecstatic that my Pred costs about the same as a fancy cup of coffee.
For comparison, the xarelto I was prescribed for pulmonary embolism associated with Covid infection costs $1200 per month before Insurance...
And I will be on it for a total of 6 months.!!!
The only advice I offer you ,is to stay in touch with this forum...be ready to stand up for yourself if your doc tries to push toward steroid soarers, etc.,
Kind regards, and Happy Holidays.
Jerri
Yes and Yes many times!! My husband had a flare up in the hospital, because a new GP did not check his inflammation marker, while he was admitted for possible sepsis. His H/H was dropping which happens with him, and he gets extreme pain in legs and elevated temp, blood pressure goes up and horrible headache etc..... by the time they responding by taking labs the next day he was in a horrible flare up with GCA and went from 16mg to 30mg to stop it. It did not work, So when we got home, he really became in a bad way. I have been a nurse for 25 years, and been working to know all I can to help him for past 5 years. He was put on heavy duty antibiotics, and not allowed to take ACTemra for duration. He got out of the hospital on Aug 13th.Flare increased when we got home!! it was one of the worse. His right carotid is affected! His sats plummeted ri 80s, his temperature went up to 103., his heart rate went over 110 as hight as 150. He was so bad, I wanted to take him back in!! but he refused!! he yelled not to increase predisone, but I asked him, do you want to live or do you really want to go out this way!! his friend was at the house, and was so scared!!Respiratory rate was climbing close to 40. So he agreed, I took him up to 55 for the day. Within 2 hours, I was able to take his 8 liters of oxygen down to 5 liters to keep sats at 95 or above, His heart rate went o 100, resp down to 30, his fever went away. In 8 hours, I was able to take him down to 2 liters and once all vital signs went back to his normal by the next morning. He did not need oxygen. My husbands case is extreme when he flares!! GCA attacks his vision and right carotid. Often times it seems he is having a heart attack, but it is always proven it is GCA. So I have been using all I learned here, how to taper him down successfully with out a flare. He is currently at 20mg, split dose, 13mg am, 7mg pm. Our GP trying to push us off predisone by trying all sorts of things. He just got out of training at Walter Reed Hospital, but has not had any GCA patients. No Rheumy over here. Plus, my husband cannot go back on Actemra because, he acquired a fungal infection on his backside, and you can not use Actemra until that is all gone.... (caused by someone, being nice doing our laundry, mixing all kinds of stuff together, despite given what we use and instructed not to add stuff). UGH ... also, he has had 3 major squamous skin cancer surgeries on face, head requiring 18 staples, and others many many stitches!! which any procedure, we have learned the hard way can cause him to flare!!
This site in so VALUABLE!! learn all that you can. If there is one thing, I cannot emphatized enough, read these threads often!! learn fron the old timers!! and especially those that have put this monster to rest and been able to wake up their adrenals too!! As a nurse, I have learned that experiences with patients grow your knowledge, however, most GPs are not exposed to GCA enough, or understand the pain of the disease and how it affects people in different ways!! Keep a LOG!!! symptoms are everything, the first sign of symptoms after a taper is significant!! it is your warning sign, you went down to much to quick ususally. Once you are under 20mg, the whole plan changes for most people. You can not be jumping down much at a time, no matter what that doc tells you. We are lucky enough now, that we do Macs labs every 2 weeks, I have finally got my husband to report any symptoms and not to hold back reporting or pretending it was something else!!! The last flare just about took him out!! I got him out of hospital. Luckily, I have learned the hard way, what this disease can do to him. ALWAYS obey sick day rules on procedures, stress ful events, and travel!!! it means alot. My husbands flareups are ususally a result of his response to pain during a procedure or stressful event such as a death. I have managed to keep tapering despite the 3 major skin cancer surgeries, by doubling his predisone for the day of procedure and making sure he premedicated with pain meds before we get to the office. His Dermatologist and MOHs surgereon. aware and seem alot more knowledgeable about these precautions!!! and definitley remind me prior, not to forget. Trust me, I will never get laxed in this area again.
I could go on for days!!! once under 20mg, we have found going slow is so important!! we have been down to 10mg a couple of times. However, in the last year andhalf, because of surgeries etc. we have gotten to 16mg once.
The slow tapers here, definitely are amazing, as long timer dealing with this, using the slow taper, tricks the body into not flaring!! if that makes sense. We do the one that 2 days at new dose, and 5 days old dose and slow slow taper adding additional new day dose weekly. My husband does good with the 5 week taper, and I believe it will take him longer when we get to 10mg. There is no way, what I have seen and heard on this site, that when you get down to 10mg or lower, that .5mg drops should strongly be used!! to be successful. GCA is brutal, Predisone is brutal on the body, so take the safest way!!! down slow and steady. This is a marathon, and not a foot race. We have learned the hard way, be careful , keep log and read all that you can!!! remember medical professionsals are all trainied, but with these 2 diseases, the experiences they have had treating them is all important. Ask them questions!!! sure no one wants to be on steroids!! but coming off the safe way preventing flare ups should be the PRIORITY!!! Dont bounce around go slow and steady!!! Thanks everyone.
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