If I choose to take no meds. What is the worst that can happen?

Hi,
I went on the PMR webinar a few night ago. It was a waste of time for me. This was more geared (in my opinion) to professionals as were the questions. I did not hear one question from a PMR sufferer answered. Honestly, I get more information and support from this Mayo forum. As patients, we are more empowered in our support for each other. I’ve also asked the same question. Am I doing more harm to myself by not caving into steroids and steroid sparing drugs (they all have their side effects). Each of us must consider and weight out the risk/benefit with the support of the medical team we trust (or in some cases, there is no trust). My inflammatory biomarkers are all fine but I am still symptomatic with body aches on a daily basis. Nothing however that keeps me from managing my usual activities, but for those of you who are affected, one must choose for themselves the best course of action. Keep the questions coming, the answers are out there albeit differently for each of us.
Warmly,
Patti

I also struggled with taking steroids. I was fairly well educated on the use and damage that they could cause so I was reluctant to start using them. On the other hand, I was in so much pain that I felt like life was almost over. Four hours after my first 20mg of steroid , I was pain free. I quickly moved to 10mg. That was my sweet spot. One of my orthopedic Drs had told me that I need to find the source of inflammation or risked damaging the joints. Damaged joints would then become an arthritis that can stay with you forever. Your doing the right things. Ask questions and google everything you can find on prednisone damage and withdrawal. Dont allow yourself to stay on it. I have always went to the gym. This is a time when your joints need the movement. Make yourself exercise. Watch your diet. lower your sugars and carbs. Try meditation or anything that helps with stress. I have never done Pilates but try a class. Become your own advocate. As much as Dr dont like to be questioned a good one is willing to share in your treatment. Understand what his/her goals are and take notes. Go to the Dr visit with written down notes to ask. I was 70 when I got PMR. It lasted 6 months and I was off steroids. I had no other medical issues so that can complicate your treatment if you have other things. But face it as a challenge. You might try one of the biologics. Actemra is one. Those can take 4-5months to start working. I dont have much information on those. here is a quote from Harvard medical school.
"Chronic inflammation in the joints can damage cartilage, bones, tendons (which attach muscle to bones), or ligaments (which hold joints together); irritate nerves; and produce a long list of symptoms, including pain, swelling, and stiffness. The joint damage may be progressive and irreversible." Good Luck

Ditto to Everyone before me. I too waited too long and crawled to Dr. Make sure exercise for body and mind. Suffering is not restful for body.
…..my Rehumy told me OTC Tylenol for Arthritis up to 6 pills a day was a good supplement To prednisone as I tapered. I’m now off prednisone and use T for A as needed with exercise and weather issues.
Ask your dr, abt Kevzara which helped me taper off prednisone and am now 95% most of the time. No side effects for me.
As long as I have had PMR, I force myself to get exercise everyday. Minimum a 2 mi walk. I have a Corrective Functional Movement Specialist, i,e, trainer/pt who keeps me moving.
With that said, she has been a HUGE help and my number one resource.
One of my drs sent me for Pool PT that was PT in a tank against jets which led me to pool walking which is easy on the body. I have taken advantage of Accupuncture, shock wave therapy, TVT (targeted vibration therapy). I have been throwing everything at the PMR except the kitchen sink. It has been a slooooowwwww road, by inches, with occasional big leaps. BTW: I do have problems with the weather, humidity dew point…..a trip to Alaska away from it and I was a new person.

So my answer is ask more questions, try more options.
DON’T give in!
PS: I am 79yo, 19months diagnosed PMR, golf, bike, hike, and all things outdoor.

I’m sure I read in a few articles and Kate Gilbert’s book, that the longer you wait to take prednisone, the greater the chances of developing GCA.

No one wants to take prednisone. I fought it until I couldn't get out of bed any longer. Then I caved. It was better than being crippled

Now, like you, Patti: My inflammatory biomarkers are all fine but I am still symptomatic with body aches on a daily basis.

I stick to an anti-inflammatory diet. I've never eaten poorly. I exercise, what some would call excessively but what is lightening up for me, 6-9 miles of walking/running a day, lifting 4-5 times a week, babysitting a 21-month old 3 days a week.

My biggest concern is the fatigue has begun to set in. I've noticed it on occasion. It's a different type of tiredness.

Frightening and a total pain in the butt. I find myself being jeolous of people with normal lives. No a good thing to do. I ry to coundt my blessins, but there is this entire high highs and low lows thing going on that someone else mentioned.

I’m sure I read in a few articles and Kate Gilbert’s book, that the longer you wait to take prednisone, the greater the chances of developing GCA.

I just ordered Kate Gilbert’s book. Thank you. This is exactly what I’m looking for. Could you extrapolate on “longer you wait toe take prednisone, the greater the chances of developing GCA? Is the for someone in the process of diagnosis or does this apply to those who continue to be symptomatic once off corticosteroids?
Kind Regards,
Patti

I just ordered Kate Gilbert’s book. Thank you. This is exactly what I’m looking for. Could you extrapolate on “longer you wait toe take prednisone, the greater the chances of developing GCA? Is the for someone in the process of diagnosis or does this apply to those who continue to be symptomatic once off corticosteroids?
Kind Regards,
Patti

Thank you to all. It's great to take this all in. All test show I don't have any red flags so it's impossible to confirm PMR. The rhumatolist said everything points to A-typical PMR. Which basicially means, even though no tests indicate PMR everything shouts you have PMR.

I've got the Kate Gilbert book, but I haven't read it in about a year. On page 40, she says "However, the difficult truth is that the consequences of not taking the steroids, for most people, carry more risks than taking them. To begin with, there is the risk that PMR, if left untreated, might develop into Giant Cell Arteritis, for those patients whose vascular system is also implicated in their PMR. Secondly, and just as serious, is the effect that the PMR has on daily life, and on the quality of life. Most people simply cannot manage daily life with PMR without the medication."

Since I had untreated PMR for about 7 months before I developed symptoms of GCA, I have wondered if I had been diagnosed earlier and started treatment, if that would have prevented GCA. But I have seen quite a few posts on this forum and on another forum where people with PMR develop GCA just as they are tapering to a low dose of prednisone. It seems like some people are just going to develop GCA regardless of whether or not they get treated for PMR. But the people who develop it after being treated for PMR have the advantages of already being connected with a medical team (rheumatologist, etc), and know the symptoms and risks of GCA. Hopefully that allows them to avoid the serious problems that can be caused by GCA.

As an aside, a few months ago Kate Gilbert posted in the PMRGCAuk forum asking people for a brief summary of their experience with Actemra. She said she was gathering information for a revision of her book. I replied to her request. I guess there's a chance my response will be included in the next version of her book.