My assumption has always been that if I go into remission it means that I can get off pred completely, and all the pain will be gone...and thanks for playing.
However, as I've been reducing I've gotten some serious pain in my shoulders when I move them in a stretching position, or even try and sleep on my sides. My nurse practitioner suggested this was separate from the PMR and possibly some form of arthritis. My Rheumy the other day however suggests that the shoulder pain is PMR not taken care of at my current dose (5mg). He bases this in part on the fact that while on vacation in South Africa I went to an excellent doctor there (who is more reasonable fee-wise than doctors here where I'm insured). That doctor gave me a combo steroid/anti-inflamatory shot in the bum. That night I felt like a million bucks, and continued to feel that way for at least a week. Shoulder pain? Gone. In fact, my shoulders never have quite returned to the frozen pain I had. They're still a bit better. My Rheumy also suggests that I could go into remission and still have that pain in my shoulders forever.
However, I don't think he's that good, so I don't over-value his opinion. So, even if he's right I value the opinions in this group more. This group has been much more helpful than him. This is the guy that never even bothered to check my blood sugar after putting me on a high dose of pred. I had to find out from my GP. BTW, I showed him the DSNS schedule. He approved of it, but has never showed any interest in it otherwise, and indeed gave me a schedule calculated to make me withdrawal and flare so...I'm pretty much on my own without you guys. So, what say you? Have I mis-set my expectations with respect to remission...assuming I get there?
Mark
Mark
Hi Mark, you should go into remission at some point and you will know when you have stopped the steroids and you do not get a flare and the pain has gone away. The trouble is you need a crystal ball to find out when you will go into remission. If the rheumatologist thinks you will have shoulder pain forever means that the pain is not from the PMR if it is in remission.
There are two sorts of PMR remission: drug induced remission, absence of symptoms while taking an adequate dose of pred and remission when the activity of the underlying autoimmune disorder has burnt out, is no onger active and there are no symptoms at zero pred.
I would wonder if your problem is myofascial pain syndrome or something similar - local muscle or muscle fascia tightness which can be excruciatingly painful. It is often found alongside PMR and is caused by the same cytokines but locally whereas PMR cytokine activity is systemic, all through the body. It tends to respond better to injections and also can be worked on with manual mobilisation techniques. I use both. By sorting it out in a more targeted manner you often manage with a lower dose of oral pred.
Hi Mark, my understanding is that once the PMR has burned itself out the pain caused by it will go away. I stopped taking pred at the end of July and I feel pretty good. Although I think there is still a little underlying PMR lingering, I have very slight discomfort in my upper arms and upper thighs when I first get up, it is bearable. It has been a two year journey for me. After I was diagnosed I made sure to eat as much healthy and anti-inflammatory food as I can, especially fruits and vegetables. I also take ashwagandha every day. I don't know if it helps the PMR, but it was recommended for thyroid conditions.
And yet he specifically thinks it IS PMR. I wonder if he's using a Magic 8 Ball for his diagnosis?
mark9992, if you are taking Phed and have no PMR pain; the PMR is under control, you are not in remission. Remission would be if you were not talking Phed and pain free. I try to think positive hope to get there one day, 🙂
Mark, if you still have PMR like pain, you probably still have PMR, plus its add ons at Eileen sometimes calls them. There's a tendency to believe when we are pain free on a low dose of pred that we may be in remission. I was under that happy delusion about three months ago, but reducing very slowly, a slowed down version of DSNS method. Then my doctor suggested I finish up the tablets I had and stop and see what happened. Not wanting to do that I started a new taper, I had just reached 1.5 mg when she suggested this and under normal circumstances I would have waited a few weeks before attempting a new taper. I happened to have enough tablets to achieve zero pred if I followed the short method of DSNS, dropping .5 mg at a time, so I thought, against my better judgement, well, let's give it a try, what harm can it do? I knew I could stop the taper if it didn't work. You can guess what happened next, can't you? I tried tapering to 1 twice, a couple of weeks each time, which was a mistake, and since then have been struggling somewhat to stay at 1.5.
Mark,
I was diagnosed with pmr in 2010. The prednisone made all the symptoms go away and twenty nine months later I was at zero. When I reached zero I had "NO" pmr symptoms
Hi Annie, I find your remarks about diet particularly interesting. A diet that particularly healthy ...fruit and vegetables just might help.
Hi Mark,
Someone said, 'Let medicine be thy food, and food thy medicine', I might have the quote wrong and I forget who said it, but I try to live it. After all, herbs have been used for healing for centuries, it's only in the last hundred years or so that we've come to rely on chemicals for healing. I would rather use a natural approach, there are less side effects. I know we have to take pred for PMR, but anything that helps push that nasty disease out, I'm all for.
Good for you daniel08939, I hope to join you some day, have to think positive and keep a smile on my face. 🙂
Anniecurd, my wife and I have been on an anti inflammatory diet for 143 days. She had suffered with migraines for over 13 years and has not had any for 140 days. We are believers, all organic and wild caught fish.
Anniecurd I am interested in ashwagandha, reading about it, it almost sounds like it could do more harm than good. But you think that it is helping you?
Hello Michdonn,
i'd be interested in reading the harmful side of ashwagandha, I've only read good things. I've been taking it for a couple of months and am feeling pretty good.
I'm jealous of your wild caught fish, we can't eat anything we catch from the Schuykill river outside of Philadelphia, too much pollution.
Mark,
I hate to say this, but you need to explore Rotator Cuff Injury and get it ruled out............luckily it does not happen often...........but it can and does with PMR..............no I don't know why, but the medical people will.
Lodger, that is an excellent point, but I already did rule that out while I was down in South Africa. I didn't mention it since I'd had it ruled out. Thanks tho! I did it in South Africa because I was down there anyway, and the medical fees are a fraction of what they are here. My doctor down there was an Afrikanns GP...really sharp. The fee was about 40 bucks for a visit. I pay 175 a visit here in Naples Fl. Thanks for that affordable health care Obama!
mark
If you look at the websites wishing to propagate the use of a substance you WILL only find good things about it.
A reliable medical information site says
"“Auto-immune diseases” such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Ashwagandha might cause the immune system to become more active, and this could increase the symptoms of auto-immune diseases. If you have one of these conditions, it’s best to avoid using ashwagandha."
You also need to be careful if you have diabetes, BP problems or gastric problems.
Here's another example of Internet wisdom; if you look up, "bigfoot" on the internet you'll find millions of site discussing their existance, but you'll have trouble finding even one that denies it. The Internet will usually try and tell you what you want to hear.
Ugh, I've never really considered that it might be that hard once you're in the range of 1.5mg per day, but I guess PMR just is until it isn't, eh? I'm properly warned.