Just diagnosed for PMR. Wondering what to expect during this process?
Posted , 13 users are following.
I was just diagnosed with PMR about 10 days ago. Put on Prednisone 20 mg daily. Remarkable improvment in days....gone from a 10 pain level to about a 3 in just over a week. My wife and I had travel plans this year. (Happy New Year to everyone by the way!) and I am now realizing this condition, in particular the prednisone tapering etc can make it impossible to get travel insurance. So how does this usually go? Will I be on a steady dose of pred for awhile with eventual tapering? My Doc said sometimes the pred is stopped and the disease goes into a type of remission....sometimes it comes back......Just wanting to get my head around this and happy to have found this forum. Thank you.
0 likes, 29 replies
renee39320 wayne45
Posted
I was diagnosed march 2015 and tapered in 18 months. I still have aches and pains but I think it's more myalgia because Advil usually takes the edge off. My husband and I travelled a lot during those 18 months- from cross country to see our children in CA, to Vietnam, Cambodia, and Morocco and Mexico! As long as I stayed on my current dose as I travelled to there was no problem. I never tapered if I was away, only when I was home for a bit so I could see what my reaction would be. I never tapered more than 10% and then when I got to 5 mg and below, just half a mg. I too started at 20mg and tapered over 18 months. I'm one of the lucky ones! Enjoy your travels but take extra prednisone away with you just in case you need to increase!
wayne45 renee39320
Posted
EileenH wayne45
Posted
I responded in textbook style to 15mg of pred - able to move again in 6 hours. I had already had PMR for 5 years at that point without being on pred. Over 7 years later I am still on pred. But my insurance doesn't make a fuss about being on pred.
wayne45 EileenH
Posted
EileenH wayne45
Posted
Yes, I do realise that. But it is rather difficult with PMR as tapering to a steady dose can take years, not months, and saying you aren't fit to travel as a result is really rather unreasonable. Little outside factors can influence the dose without you being "ill" in that sense. That's what I meant - I haven't really achieved a steady dose more than once in the last 7 years. I got to 5mg and was great for well over a year. BUT, I should still have been trying for a lower dose, so on your insurance basis I wouldn't qualify for cover. But I was well and even changing dose won't make any difference to whether I am fit to travel or not. Using a slightly higher dose would perhaps mean I AM fit to travel, a lower dose wouldn't make me unfil to travel - it would just mean I didn't feel as good.
andrea93419 wayne45
Posted
Hiya Wayne,
I've had PMR now for 2 years, I could go on for hours about the actual condition, but my message for you is about 'holiday insurance', I have a bank account with the nationwide building society and they cover my PMR on their Flexplus account!
hope it's a help!
Andrea xx
Silver49 andrea93419
Posted
I have the same insurance and they also cover my PMR but that's only for someone who lives in the UK. It maybe different in other parts of the world.
1951grumpa wayne45
Posted
Hi Wayne, everyone is different in their response to the steroids. A friend had PMR and he was able to taper off of prednisone in less than a year. I've had PMR for over 5 years. Reducing too fast usually has negative consequences, the pain returned.
There is a lot of information available here and on the web. I am fortunate that I haven't had too bad of side effects from the prednisone and methotrexate I've been on
I try to exercise a few times a week and keep busy with other things. I am able to do most things I want to, as long as PMR pain doesn't return. Hopefully you'll get over PMR sooner than later. Take care, George
wayne45 1951grumpa
Posted
Yes it seems there are many outcomes with this condition. I am hoping I will be one of the lucky ones! Praying hard for that outcome. I do exercise daily, and you are correct....it does help one feel better! Thank you for your comments. Happy New Year!
ptolemy wayne45
Posted
I am so sorry you have been diagnosed with PMR, however the pred really is a wonder drug and does allow you to at least live a normal life again, as long as you remember that you do have an illness and get lots of rest and not overdo things as PMR does have a habit of biting back.
You are normally given a higher dose of pred than you actually need initially to get the inflammation under control. Doctors are always very keen you should start reducing as soon as possible. Three weeks has been suggested, but I feel a week or two more seems to be preferable for a lot of people. One guy I know started at 15mg and reduced to 10mg the following week. I am not sure if he was exaggerating or not though. It is usually recommended you should not reduce by more than ten per cent at any one time although a lot of doctors seem to ignore this. Don't let them push you.
I can see no reason at all why you should not travel if you feel up to it. Travel insurance should be available if you shop round. As they say a change is as good as a rest.
It is a good idea to take vit D and calcium supplements to counteract steroid side effects, perhaps ask for a vit D blood test too. Your doctor should suggest supplements. Also a Dexascan is recommended to check your bone density as steroids can cause osteoporosis.
The PMR is an auto immune disease and will always be there, but usually goes into remission, as your doctor said, sometimes within a couple of years, although for some it can be a lot longer. It can raise its ugly head again if you are unlucky.
Enjoy your holiday.
wayne45 ptolemy
Posted
EileenH wayne45
Posted
EileenH wayne45
Posted
PMR should make no difference to getting holiday insurance at all. You need to declare it and it may be worth shopping around if you don't already have a policy but one of my friends continued using the insurance that came with her bank account in the UK. I assume you arein the USA - no idea how their system works but it is no problem in mainland Europe either. Since I have had PMR I have travelled all over the world, both without being on pred and while taking it. Apart from the fatigue which is a bit more of a problem than maybe you are used to - no problems. Nowadays I request airport assistance though that is a very new development and I have travelled without it feeling worse! However - it is a fantastic help in arriving there feeling fit to do things, allows access to seating in airports with poor facilities and saves you worrying about a comnnection and uS immigration delays!
Your doctor has it the wrong way round - you don't stop the pred and the PMR goes into remission. It is a case of the autoimmune part fades and goes into remission, then you can stop the pred. There is a subtle difference! It takes from 2 to about 6 years for 75% of patients to get off pred, those who get off in a couple of years are at a higher risk of relapse but it can happen to anyone. It is unusual though - most people eventually get off pred and that's it. Then there are people like me - I've had PMR for 12 years - it doesn't seem to want to depart. In that time I've had a couple of major flares. But as long as I take the right dose of pred (i.e. enough to manage the inflammation and therefore the pain and stiffness) I have a perfectly normal life and no problems. Don't let your doctor try to rush you off the pred - slow and steady is the way to go about the reduction to find the lowest dose that gives you the same result you have now.
This link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
takes you to a post with a load of links to reliable (i.e. credible) information and a couple of other forums and support charity websites. All UK based. Do some reading and then come and ask questions - someone will try to answer. There is a slow reduction plan in the replies section if you are interested.
wayne45 EileenH
Posted
Hello! Thank you for your comments. I will be able to get insurance once I am on a steady dose (no increases or decreases) and a clearance from my doctor in regards to any recheck appts to "see how you are doing" This is classified as investigative appointments and is considered unstable. Looks like things should settle down eventually so that is good. My Doc is amazing and takes really good care of me, so i have no worries on that end.
EileenH wayne45
Posted
The entire point of PMR is that it is a titration and it is NOT unstable. And once it is diagnosed there is no instability - except possibly due to trying to reduce too fast!
But be warned - you may not find you can taper down to a stable dose in a specific time. Most experts would envisage a tapering period to get off pred of about 2 years - and that is very optimistic. See the paper listed in the links I gave you as the "Bristol paper". Things don't settle down for everybody - but you won't know until you try. But don't every try to rush off pred - it doesn't work.
I imagine though that our US mates will be along to tell you how they manage. Changing doses are not a problem for us in Europe though I appreciate how insurance companies
Anhaga wayne45
Posted
I don't understand about having to be on a steady dose of pred. Especially if you will be travelling for more than a couple of weeks. How would the company even know whether you were taking 8 mg one month and 7.5 the next, and down to 7 the month after? Why would they even care? It's not a kind of medication which will cause problems if you are not on exactly the right dose for you. It's not going to cause you to go into cardiac arrest or anything like that.
wayne45 Anhaga
Posted
I understand what you are saying. It is the wording on the stability clause of many of the travel insurance policies, at least in Canada. There cannot be an increase or decrease in a medication for a period of time....be it 90 days, 180 days, or whatever. Some patients can develop GCA as well, which is inflammation of the blood vessels.....it is an associated disease of PMR. It can cause trouble with vision, and even heart problems. What we need for our insurance is for the Doc to taper me down to where he is happy to say "see you in 6 months" If he says to taper for the next two months and come in for a recheck for the PMR issue, I am not considered stable. If there is documentation on my records that I am on prednisone, and tapering down by 1/2 mg a month, it is simply a change in medication.........which affects my 90 day stability requirements. Not really great, but it is what it is.
sheila28713 wayne45
Posted
Where in Canada are you?
I am 58, live in Calgary and I have traveled extensively in the past 3 1/2 years since PMR became part of my life. I have never requested extra insurance. You may want to have a medic alert bracelet showing the amount of Pred you are on, in case you become ill when traveling . Ofherwise, if you are otherwise healthy , you are likely fine for short term travel .
This forum is the best for info!
ptolemy wayne45
Posted
wayne45 sheila28713
Posted
I live in BC. Because of my many health issues (Coronary Artery Disease, Diabetes, etc) this does complicate my eligibility but only until we get things fairly stable. BCAA has a pre existing coverage that is pretty good and I will qualify eventually for that. Thank you for your reply. This forum IS really amazing and it is so helpful to talk with people who have been through this. I am grateful for all the advice.
wayne45 ptolemy
Posted