To taper or not to taper... that is the question

Oops. Sorry for the errors above.

 

Gosh Tina you certainly seem to have been through the mill. Such a long time of suffering. Your PMR experience is some what similar to mine with lower limbs and recent difficulties with hands. However you don’t talk about your medical experience- I really think you should talk to your doctor about your recent symptoms. Sorry to not be more helpful. 

Thanks for mentioning and sorry about your condition. My condition is not even close to what you describe.  A year ago or so I was able to work in a yard with no problem. Now my hands are weak and they do hurt if I try to open sealed jar for the first time or similar effort. I used to be "go to" person in the family when someone has trouble with jar or similar. I guess that is what bothers me. But condition comes and goes away, so some days it does not bother me.

I don't have numbness, although it happens sometimes if my blood flow is restricted to the area for some time because of the position

Nick, I had weak stiff hands getting better, but still not back to normal. The question could be will we ever get full back to normal? And what is normal for someone? I think the PMR takes it toll as does the Pred, but we are still in the game. I thinking positive with a smile. Yesterday bike ride was a little over 30 miles. Ride again in the morning, but a easier ride. ☺️

Nick, I would hold steady on what ever dosage provides no PMR symptoms. Maybe after couple weeks reduce by the smallest level you can using DSNS.

I think positive about getting to that level. Smiling ☺️

Wait and see nick - if the pred helps your rheumy will make a longer term decision which will probably involvve different medication but staying at an effective dose of pred until the new medication kicks in. Or he may be willing to stick with low dose pred - there is a rational for using just pred.

I will follow your progress with interest.  Hoping my issues are just a flare up of osteoarthritis, but you never know....  I know exactly how you feel regarding the taper.  However if 7 mg and perhaps even 5 mg work that's a whole lot better than 15 mg or a new medication!

I don’t have RA issues, but just to commiserate with the large step back.....I’ve come up against adrenal insufficiency and had to go from 2 1/2 back to just above 4 (still experimenting on my happy place).   I was last at this dose about 3 years ago.   Sigh.....

Awaiting appt with specialist for synacthen test.....waiting 4 months so far 😡

it is sad to go back, seems like all this (taper) time was wasted. But what can we do, putting up with pain or fatigue (I am guessing in your case) is not really  good choice.

Dr suspects RA, not osteoarthritis.  He did ultrasound. Next time when I see him, will do blood test, but I dont suspect he will find anything, because I had blood tests just 2 weeks ago and if it is RA it is  Seronegative RA.  There was an interesting article/study posted on different forum regarding PMR and RA... Title is "Polymyalgia rheumatica: observations of disease evolution without corticosteroid treatment" and it's conclusion is that most of the PMR patients (77%), if not treated with corticosteroid would develop RA withing 6-9 months.  Maybe pred just delay that until we taper down to low dose.

I hope so Nick, stay active, positive and try to smile. I know it sounds crazy, but I believe it helps. ☺️

You are talking about the Dove Press article I take it? It is a very dodgy source. It is an open access online journal - the author pays to publish and many do so to get their poorly structured studies that have failed peer review elsewhere. Prof Sarah Mackie is not impressed by their publications!

I had PMR for 5 YEARS before getting pred - and there is no sign at all of anything even vaguely resembling RA having developed. There are a lot of people on the forums who had the symptoms without being diagnosed for many months and who don't have signs of RA. And really - where any patient continues to have problems after starting at 15-20mg further investigation is called for. It is also a reason for keeping to the low-moderate starting doses, lots of things will respond to high dose pred, and Plaquenil is not a nice drug either. Why should any patient be left immobile and in pain for months if a moderate dose of pred does the job? Low dose pred is a perfectly reasonable approach to managing LORA in its early stages and is one which is discussed in the medical literature. Yes there are some misdiagnoses, mostly by GPs who then over-treat. But not 3/4 of them.

Yes, I have commented in the other forum, that even if it is true, those ~100 patients that participated went thru hell for the first 6-9 months. 

BTW, my knuckle joints responded well even after 1 day to split dose (6 +3) mg pred. Pain and stiffness is gone, some swelling still there.  Rheumatologist recommended 7-8mg dose. I plan to hit it with 9mg until swelling is gone and then try to reduce, if possible to 5-6mg maintenance dose until I see him in 4 weeks. 

I shudder to think what those patients went through and were probably afraid to say anything. Thank goodness it was not me.

Yes, saw that article.  I think one of the problems with idea is the additional suffering of those who are not going to respond to plaquenil as it seems to take a few months before one knows.  I've got a cousin with RA and her symptoms have always been very different from mine.  Mind you, she developed it quite a few years ago so would have been younger, not "late onset".  My hands are a lot better since the weather changed, not so oppressively hot and humid as it was a few days ago so it does seem mine's just OA and repetitive stress. 

What will they do if RA is most likely?  It almost seems like if you do well with a moderately increased dose of pred that might not be a bad option?  At least it's the devil you know!  

Nick, year ago end of April beginning of May, I had a flare, it started after little cold. My Rheumy decided best small dose I. I was at 7 mg and finally at 30 mg I got relief, after 4 weeks at 30 I felt pretty good, stayed on 30 mg for 6 weeks total before starting to taper. Each subsequent flare, I have jumped on quickly with a heavy dose.

Reducing the inflammation before it gets a chance to get ahead of me, so far it has worked. I wish I had not been so conservative a year ago. Thinking positive, with a smile.☺️

that is exactly my thinking - making sure that I stay ahead of inflammation. I have gone a bit higher then what Rheumi suggested and the reaction was immediate. After 2 days, I hardly  have any symptoms and hands almost feel normal again.  I was down for a day, but then optimism was back... When I realized that something new is happening with my hands, I reacted quickly and was able to get next day appointment with rheumatologists.  With our illness it is very important to know your "pains" and be watchful of any changes. The sooner you react, the easier is to tame the beast.

Nick, I believe you are listening to your body and reacting. I been doing that for a little over a year. My Rheumy was upset with me a first, but now she is just checking status and request that I tell her how I am doing and what my dosage. I had several small flares hit them heavy, reduced when normal in couple of steps, then told her nurse after the fact. The use to tell me that I should have called, I told it was on the weekend. You know your body better than they do, treat it accordingly. Good luck stay in command with a smile. ☺️