Does PMR disappear as quickly as it comes? Or does it gently just fade away leaving only the memory of pain and all the side affects? I've read where some have gotten over this but not the details of it 'going'.
I'm looking toward the future as I'm still struggling with 2.5 two days and 2mg the third day, repeating.
I guess I just want some hope or at least something I can look for when my PMR decides its had enough of me!
I don't know how PMR leaves but my rheumatologist says I should not have it longer than 18 months but I think I will prove her wrong..She says that the immune system changes itself out 75% every 3 months but if you taper down too quickly the body can remember and the inflammation comes back..She tries to taper my Prednisone every two months but it has not worked so far.. She was for sure that I would be completely off of it by Christmas and had even discharged me on 2.5mg with the hopes of being completely off by Dec. 21 or so...but the old inflammation came back and she made me stay on 5mgs with a return office visit in December...I am still hurting so I don't foresee a change anytime in the near future for me.Oh my gosh, 18 months? I don't think your doctor understands that PMR has a mind of its own. I'm going on 4 years and am down to 2mg as of this week. I am holding my own although mornings are a bit difficult.
I just wonder if PMR leaves as quickly as it appears, or if it just quietly and slowly retreats. I don't think the doctors know how to deal with it. My doctor wanted me off by this December, but it doesn't look like it will happen that soon.
I don't want to push it because I know from experience the pain returns and the dosage has to be increased. I was almost a paraplegic due to the pain, but I am doing really well now, almost 4 years later.
I wish you well and that your PMR will quickly disappear. Perhaps your doctor will reevaluate your progress and not push the taper. I have found that I am the best gauge of what my body can tolerate.
Hi there
Within the next two weeks on this website http://www.pmr-gca-northeast.org.uk
An article on 'Steroids and What They Do' will be posted. It has been written by a patient and is for patients and has been checked over by a Pharmacist. The article is too long to post on this website.
Aside from the above, I have been told previously that sometimes when on a tapering regime, because the body has got used to the steroids and does not want to let go, it can mimic the pain.
I personally have found, and I don't have pmr, but have GCA, that when I take a drop the first week can be sheer hell. So, I clear the decks as much as possible for the week I am taking the drop and just rest and mooch and generally grin and bear it. Each time it has worked.
Now, remember I do not have PMR only GCA. But withdrawal symptoms will appear in most people when you are trying to come down. So maybe you should try and and put up with 'what could be a taken for a flare'. If the symptoms disappear after the first week, then it was not a flare just the bodies withdrawal symptoms.
I don't think the Medics have got a handle on this at all. Those of you with pmr and gca will know your own body better than anyone and if we cannot distinguish between the illness and the withdrawal symptoms then who can. But, and I cannot emphasize this enough.
Until your adrenal glands 'kick in' again and your body makes its own once more - you cannot run the risk of being without co-costeroids, either your bodies own or the prescription. You will quickly become seriously ill.
When you are tapering the dosage, how can you tell the difference between pain that is caused by reducing the dose, and an actual relapse (your body isn't ready to taper and you need to stay at the higher dose)?
I'm assuming that withdrawing from the medication will cause some pain until you adjust to the lower dose, but how long does a person allow before realizing they aren't ready to taper, and going back to the higher dose?
Hope this makes sense. Thanks to anyone who can shed some light on this!!
freesia