So disappointed and disheartened this morning
Posted , 10 users are following.
After suffering with symptoms for quite a while I was finally diagnosed with PMR in April 2016.
Started on 15 mg with dramatic results. In May of 2016, after a long trip caused a flare, I had to increase to 20 mg. Between now and then I have experienced multiple ups and downs while trying to taper.
Thought I was making progress during my current DSNS taper from 13.5 to 13. I am in the second phase of the taper where I am at 1 day old (13.5) and yesterday took the 3rd day of new (13 ). Was looking forward to taking 13 again this morning which would have been my 4th day of my new lower dose.
Sadly, when I woke up this morning I am in a lot of pain, am having difficulty moving, feeling nauseous and have an overall sense of feeling terrible.
I understand that PMR has a mind of its own and it will determine how/when my dose can be lowered, however, it's now been 3 years and I'm still at 13.5 !! My rheumy who is terrific has ruled out other possibilities and allows me to reduce at my own pace.
Feeling deflated that I can't make, what I would consider, satisfactory progress with at least getting to 10 mg. Am I missing something ?
0 likes, 10 replies
Silver49 rocketman42
Posted
Try not to get too hung up on the reducing. PMR will go when it decides and not when we want it to. I was over 4 years on Pred and only recently off. It almost seemed sudden at the end though it wasn't. We are all different and in to the mix goes stresses of daily living which impact on our body. I found the best plan was to go with the flow. It's great that you have a good Rheumy which takes a bit of pressure off. Three years is not long in the scheme of things and perhaps you are pushing your body more than others. Do you do a lot of activities throughout the day? Perhaps you can cut back a bit. Be kind to yourself.
Carnut rocketman42
Posted
hi,
I'm in the same boat but have only had this curse for about one year. Can't seem to get below 12mg. tried 11.5 a couple of times with bad results.
Rheumy wants me to try Acterma, which so far I have resisted.
However, at three years on, I would probably be receptive to trying a steriod sparing drug. You may want to consider this.
RON age 70 male, in great shape before the diagnosis.
rocketman42 Carnut
Posted
My rheumie was one of the lead investigators in the ACTEMERA study at HSS in NY. Due to a comorbid condition I have Actemera is contraindicated so not an option for me.
Harrie4 rocketman42
Posted
Very frustrating! I'd be disheartened too! I think both suggestions -- that you moderate activity and consider steroid sparing medication -- are good. But before you add a drug with new side effects you might want to recall is that PMR is an autoimmune disorder. So maybe a little experiment might be in order. You cld try to first take the dose that relieves your symptoms and then when you're stable and restart your taper, never reduce by more than 10% and then only when you're symptoms are under control. Remember that there's a vascular component so any physical exertion must be gentle. It might also help if you remove autoimmune triggers like sugar and wheat from your diet. And give yourself permission to do whatever it takes to avoid stress: lots of sleep, reading, relaxing. Healing is an active verb and you're allowed to make use of any tool that helps -- including rest, relaxation, and good food every day. And of course, you have a community of folks here rooting for you. Please try to be actively kind and generous to yourself.
rocketman42 Harrie4
Posted
thank you !
EileenH rocketman42
Posted
Could it be a mild infection causing trouble?
rocketman42 EileenH
Posted
Hmm ...I did have a bit of a cold last week. Could a simple cold have thrown things off ?
EileenH rocketman42
Posted
I didn't get a notification of this - just found it!!!! Sorry!
Yes - any infection can cause trouble!!! Immune system gets poked ...
ptolemy rocketman42
Posted
My CRP and ESR rocket up if I get a cold.
Michdonn rocketman42
Posted
Hi Rocketman, a little over 3 years on my PMR journey. Almost anything can cause me to flare. I have changed my diet to all anti-inflammatory foods, organic and wild caught no dairy and no chicken or eggs. Almost every time I cheated, I flared. I use eat a lot of cheese, now maybe just a little; no more green chili cheese burger for me living in green chili cheese burger country. We have to listen to our bodies. your Rheumy's do not know our bodies. Many days I love to have a beer or a glass of wine at dinner, but know I will pay for it so I don't. I started on 20 been as high as 30 now on 3.5 tapering to 3. Good luck on the rest of your PMR journey. I will not taper if I have any PMR pain so my journey has been slow, but less painful. 🙂