Reducing meds
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I was diagnosed with PMR and Temporal Arteritus early December, 2015. My initial dose was 60mg for 2 weeks which mostly controlled my pain, except in my left side hip area and thigh. My doctor did not think this related to my pmr, but it did improve over those 2 weeks and my bloods were down so I went down to 50mg, which was holding OK. I was then put down to 40 from the 1st of Feb and within 2 days the pain in my hip returned and my temple pain reappeared but not as bad as before. I have now put my meds up to 45, this is the 2nd day and there is some relief but only minor. As it is early days for me I would welcome advice and information about what to expect when lowering prednisone. My rheumatologist has given me a program whereas she wants me to drop down 10mg every month to get back to 10 per day and then start dropping it by one. I imagine that this is a recommended procedure but that everyone is different. Before treatment I was at the stage where I had blinding headaches and extreme pain in my arms and I could not use my legs very much, had to get a walker to get around. I am now moving, but still with a lot of discomfort. I was wondering if the pain in my thigh could be from the Temporal arteritus and if I should get scans done of my main arteries in my legs to see what is happening. Thanks Sharon
1 like, 27 replies
elizabeth20640 sharon61808
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I started off with pain in right side of neck and flu like symptoms and then developed pain in thighs I try keep it short, my CRP was 83 went to hospital and
seen rheumatologist I was put on 20mg pred and within a day all pain gone,
But they told me to reduce after 2 weeks 2.5mg every 5 days when I got to 12.5 I went to eat and had jaw pain and then noticed arteries in temple bulging out and pain in my head, went to hospital, and was admitted and put on 60mg pred and they did a biopsy which was positive,
I left hospital after 4 days felt fine, a little jaw pain.
Next day started to get severe headaches couldn't put my head on pillow went back to hospital , they didn't seem to want to up my dose, and gave me pain killers which didn't help, I was crying with this headache, and the I had tempory sight loss the most frightening experience, I had 3 episodes lasting 15min each time in right eye so back to hospital and they increased my dose to 80mg and was fine, you need a diary to record everything even slightest niggle, and go back up a dose, I think if there any pain there it means inflammation is there, I was doing fine until the summer and pain came back in neck but it's not bad and didn't really notice it coming back, and can't even remember what dose I was at I'm down to 10 mg now the rheumatologist told me to stay on it for another month I'm back to see her Monday and she do more blood test, I did try going back to 12.5 didn't make any difference, they say thigh pain is more to do with GCA sometimes I think I had GCA and not PMR who knows, but the secret is dead slow reducing you can look it up on this site. Cause even my rheumatologist still reduces too quickly hope this help, this is one of my sleepless nights and good luck I'm still learning about this disease
EileenH elizabeth20640
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Thigh pain in the muscles when you use them which then gets better when you rest is often due to GCA but if it is on the outside of your hip and hurts to lie on then it is more likely to be bursitis. The muscle pain will improve quickly even with a much lower dose but the bursitis is much more persistent and takes longer to go away with oral pred - and injection will work much faster.
sharon61808 elizabeth20640
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Elijo EileenH
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Elijo
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EileenH sharon61808
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Your doctor is probably right about the hip and thigh pain not being PMR - but it could well be something called trochanteric bursitis (or trochaneteric pain syndrome sometimes) and this isn't uncommon in PMR. It will go with the oral pred eventually but may take a few months. It often responds better to local steroid injections and they can be given alongside oral pred. If it is that, it isn't anything to do with the arteries, it's an inflamed bursa, like housemaid's knee or tennis elbow but in a different place.
I don't entirely agree with the reduction programme your rheumy used at first - a month at 60mg and a month at 50mg might have been better. A more usual reduction used by a top PMR/GCA group is 60mg for a month, 50mg for a month, 40mg for a month and so on down to 20mg, Then a much slower approach to 10mg. You always keep a close eye on the symptoms - if they return you return to the previous dose that worked and wait a bit before trying again.
It's the temple pain that bothers me most. Were your blood markers down to normal range? Research done a couple of years ago in London and Southend, UK has shown there is still evidence of inflammation in GCA and other forms of vasculitis after 6 months on high dose pred (over 20mg), even though the blood markers are OK and the patient has no symptoms.
If you follow this link you will find a lot of reading and links to other support sites - the one from the northest of England group is particularly useful.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I think you need to go to your GP and ask to possibly go back to 50mg until the temple pain is gone if the 45mg isn't doing it. When are you to see the rheumy again? I hope it is very soon - if not your GP should be asking for an urgent appointment.
sharon61808 EileenH
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EileenH sharon61808
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judy93591 EileenH
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EileenH judy93591
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That is a GP to sack! I know they are having a rotten time with JH and I am sympathetic there (another lying load of rubbish from him on Marr this morning) but they could at least put their brains in gear when they have a patient who COULD go blind.
judy93591 EileenH
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EileenH judy93591
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sharon61808 EileenH
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EileenH sharon61808
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The only reason to visit that rheumy again is to educate her so make sure you and your GP keep good records!
Ardern sharon61808
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That sounds familar. I was diagnosed with Temporal Arterities in late Oct 2015. Started at 50 mg of pred and then raised to 60 stil then I have been tapering 5mg per week until I hit 25 mg then 2mg per week until I reached 18 mg and now I am dropping 1mg per week. I found that in the lower doseages I had to keep the tapering lest that 10% per week. Anything greater I was able to doing againthing that day. I was in tired and in pain. My Doctor has suggested that I continue at 1 mg per week until i reach 10mg and then reduce again to .5 every 2 weeks to 7 and then hover at that dosage for a month at that time I should see him again. With me I am able to reduce a small amount every week I take 3 to 4 days to get accustomed to the new dossage but again greater than 10% is too much. the dosages they reccommed have to be taken with a bit of salt cutting back too quickly will just cause problems and slow down your abilitly to get off of this stuff. My short term memory is unreliable and I had to start a diary to keep track of how I felt and the dosage I was on. Good luck Sharon
EileenH Ardern
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Though if it's working - fabulous!
Ardern EileenH
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I started with jaw pain and then oclar migraines for a couple of weeks. I was able to manage the pain with asprin and codine (222). My Doctors said that my Blood cemistery was good. I had no head aches no sweling of the temporal arterites. Then in a couple of days server aches swelling of the arterites. I was put on 50mg then up the 60. Sed rate rosed to 15 and CRP climb to 150 within three days all the pain was gone blood work back to normal. My Remy hasn't seen the disease come on so fast and then subside so quick. A biospy was done a week later and it came back positive. Since I had no pain on blindness, just the side effect of prednizone. I just hope to be of the drugs by the spring but every time I exceed to 10% rule I have increase the dosage. right now I at 14 mg monday I will cut back to 13 and hope to be off complete by Oct. That will be 12 months. I am trying to walk 4 k twice a day which real helps me with the side effects, but its winter here and sometimes hard the find a window of oppurunity. So it's time for a walk
Thanks for the incourment
John
Ardern EileenH
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I started 12mg on Monday. I usally go for a 4 k walk in the morning a structed exercise class after that and the same walk in the afternoon. Since thursady the temperature here has been too cold to get outside. I have eaten too much suger this weekend. Yesterday bad head aches not TA type head aches, sore right lower leg and it is worse today. What now? I am going out to walk when it is light it's has warmed up to -3 today should I see how today goes and maybe up my dosage tomorrow. I would pefer to tough it out. What is the down side to maintaining this dosage
John
EileenH Ardern
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You need the amount of pred you need to keep the inflammation under control. Just because it appeared and "disappeared" so quickly originally does NOT mean that it has gone entirely. In most autoimmune disorders the activity of the causative immune system problem very likely waxes and wanes. In your case it may well have waned suddenly after leading to the original symptoms and the positive biopsy but is still there in the background, possibly affecting other arteries and could reactivate.
You can want to tough things out all you want - the GCA may not wish to listen. Many of us on the forums have been at far higher doses than that for far longer than you - and haven't crumbled in a tiny heap. The reason for being on whatever dose of pred you need is to manage the symptoms and allow a better quality of life.
If it isn't high enough then there is still uncontrolled inflammation present in the body and that can be doing damage to the cardiovascular system and even increasing the risk of certain cancers. My way of looking at it is more what damage will happen if I allow the GCA back in with too low a dose of pred. Not "might a bit longer at 12mg cause me any damage". Whatever the potential side effects of pred, the potential long term effects of GCA are at least as bad, probably worse if your vision is affected. Just because it didn't happen last time doesn't mean it won't happen the next time.