Prednisone to Dexamethasone

[NanciJean]

Hi, I have posted only one time before when I was running fevers every night on Prednisone. My Rheumy put me on Dexamethasone and the fevers left. Since she is just coming into her Practice, I suppose she has had little to do with PMR. Have an appt. with a Seasoned Rheumy in 2 weeks. Even my regular Physician tried to wean me from 4.0mg dex to 0.5mg..In weeks no less. Dex is a bit stronger than Prednisone. Well, in this time period my shingles popped out, I got a mouthful of ulcers, inside and out,my arms were covered in red bruises, from just a slight bump and on top of everything, my tongue feels like I've been sucking on Jalapeno peppers. I believe my autoimmune system went into overdrive.

But I am still kicking, just not as high as before PMR. And I actually rode my motorcycle for the first time in 2 years!! I hung my tongue out the entire time, it was just so cooling. Imagine a 60yo woman doing that silly stuff!!! Oh well, I am from the US so that explains it..Thank you again for allowing me to post and gain the knowledge on PMR from this forum and all of you fantastic people who share their experiences.

[SheffieldJane]

Hi Nancijean, good to hear from you. This is the first time I have heard of Dexamethasone being used for the treatment of PMR. The side effects sound horrendous and you seem to have them all. It is also the first time I have heard of troublesome night fevers with Pred, although I am familiar with being on the hot side with sweats upon exertion.

Are you having Adrenal gland problems?

Good on you for the motorbike stuff!

Puzzled by your treatment protocol but I am Internet taught, particularly this great site. Go well.

[NanciJean in reply to SheffieldJane]

Hi Jane, Over here in the US, it seems like PMR is almost a ghost disease. Very little is known or spoken of it. It took 6-8 months to find out I had it. The Rheumatologist I will be going to in a few weeks has treated PMR, I hope. I actually made an appt. to go to the Mayo clinic on Oct. 24th in Minnesota, just in case. Listening to my Primary Care Doctor and former rheumy, tapering little by little is almost nonexistant. Luckily I found you guys and learned more and more. PMRPRO sent me a link about tapering and I am trying to follow it. I'm not saying I am smarter than my doctors, but they aren't the ones who go through the withdrawal and pain when you jump way down on your meds. So until I finally get a treatment protocol, I will stay on 12.5mg to keep the pain away. As far as Adrenal problems, the fatigue has been with me since Dec. of last year. Just looking forward to a structured tapering. Mostly to feel better, but also to stop losing my hair on my head and actually growing a beard!!! Well, not a full beard, but I was beginning to favor Winnie the Pooh.

Thank you so much !

[NanciJean in reply to NanciJean]

Maybe THIS is why I am having such a tough time finding the right doc...

Polymyalgia rheumatica: Rare Disease

Polymyalgia rheumatica is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Polymyalgia rheumatica, or a subtype of Polymyalgia rheumatica, affects less than 200,000 people in the US population.

[SheffieldJane in reply to NanciJean]

My hairdresser says that my hair is getting thicker, I've tapered down to 7 mgs from 20 mgs . Since March 2016 I think, stalling a few times.

Still puzzled by the Dexamethasone addition to your miseries. It seems to be prescribed for Adrenal problems. I really try to bat away any unnecessary medications - like the bone density ones when I had a good scan result, and Omeprazole, when yoghurt does the job just as well ( Greek yoghurt and honey) so I am Winnie the Poo too.

I hope to be able to find my way out of this maze of chemicals one day, so the fewer the better.

Your good cheer is laudable! 🤣

Some of your compatriots have found decent doctors for PMR. Where are you in the US?

[NanciJean in reply to SheffieldJane]

I am in Hampton Roads Virginia. My new Rheumy is in Williamsburg, Virginia. Keeping my fingers crossed she will get me straight on the meds. I have always been a happy camper, even when I have to jump out of bed at 3:00 am because of the foot and leg cramps...I simply know to be thankful as things could be a lot worse!!

[SheffieldJane]

I like your style Nancijean!

[PMRpro Ambassador]

I haven't come across dexamethasone being used for PMR before - it isn't that it is stronger really, that just means you should use a lower dose in terms of numbers but it has a much longer half-life so there is still some left over from yesterday when you take today's dose (if you see what I mean). That becomes a problem when you get to low doses and triggering adrenal function, the body always has corticosteroid present so sees no necessity to produce its own steroid, cortisol.

But what is it that makes them so desperate to get the patient with PMR off pred irrespective of their symptoms? They obviously don't understand autoimmune disorders in general.

[NanciJean in reply to PMRpro]

HI PMRpro,

I surely hope this appointment with my second opinion Rheumy will get me straight. And you are so on point with the understanding of autoimmune disorders over here, that is why I have an appointment at the Mayo on the 24th. Think I just need a complete overhaul. : )

[Pookiesherlock]

Nancijean et al, I have been taking Prednisone for years but have now cut back to only using it during an intense flare-up of the COPD/asthma. I am on other meds for blood pressure, high cholesterol and high sugar diabetes. All of these meds have some sort of side effect. In fact, I take cholesterol med because it protects my kidneys from the effects of the diabetic med and both can increase my blood pressure. The blessings of living life through chemicals. But each person is different. My niece had such a severe allergic reaction to Prednisone that she ended up in a coma for a month. Her heart developed a fluid sac around it that was compressing her organ and she had to be life-flighted to University Hospital of PA to be revived and treated. My issues with my meds came from my doctors prescribing too many steroidal drugs. I was on 12 every day. Treated in the ED I was overdosing but was sent home and by the grace of God a nurse replied to my phone call and helped me through the crisis. I wasn't about to return to the ED any time soon as I'm sure you can understand. But it wasn't the fault of the ED physicians, it was the lack of knowledge about my meds and treatment plan on the part of my primary care physician. I repeatedly asked for referrals to a pulmonary specialist but in his arrogance he refused until the ED incident. Then, blaming it on the ED, he referred me to the pulmonary specialist where I have been treated for the last year. I am planning to participate in a 5K race next month. Big change from last year at the same time. I pray you will find the right doctors and medications that work for you. In the meantime, if something is causing you pain, breathing problems, distress, anxiety.....call your physician immediately and tell them you won't take it any more and watch them move. Most meds need to be titered down to stop taking them, but don't stop all at once without alerting your physician.

[NanciJean in reply to Pookiesherlock]

Hi Pookie,

I don't have an explanation for the fevers every night and flu like symptoms..earache, sore throat...when I take Prednisone but I feel blessed after reading what you and your niece have gone through. I understand PMR is not an everyday diagnosis, but for my Primary care Physician to expect me to go from 11.5mg directly to 0.5mg is crazy. That is the script she gave me...0.5, when I called and told her I simply couldn't take the pain, she told me to just double up on the 0.5. Bless you and wishing you good luck on your marathon!!! Thank you for the advice...I need it, definitely!!!

[Helplupus]

I don't take predisone, I told my doctor's couple weeks ago that I didn't have Lupus anymore. What I take and eat may not work for everyone though. I wish you the best if it don't work it can't fix it

[jrsteiger9]

Hi Nancyjean: Sorry but I don't think I can help you. I have been on steroids for 18 months now. Prednisone is like a miracle drug for me. It immediately helps me. I have a rare lung disease that was acting like an autoimmune disease. I started on high dose of pred, (60 mil.) and went down to 2-1/2 mil. I became sick again and repeated--high to low. The third time we went back up to 20 mil. and down to 2-1/2 mil. and I finally became "stable" last December. I have been on 2-1/2 mil. since then and am doing OK. My doc thinks he's going to leave me on the low dose since I seem to be functioning without a flare-up. Initially he was going to try an experimental drug but since the pred. was working and it was such a low dose, he left me on it. I'm afraid I don't know anything at all about Dexamethasone. Sorry I couldn't be of more help to you.

[NanciJean in reply to jrsteiger9]

Hi jrsteiger9, Thank you for replying. I hope the new Rheumy will get me straight.

From what I've read, the Dex isn't very good for the adrenal gland. Can't wait for Oct.9th...